Daily Diary, Pre-Nov 2001 thru May 2002
*In Reverse Chronological Order*

May 28, 2002:   (10:25 pm) My doctor agreed to the prescription changes and it's working great. I'm sleeping for 8+ hours a night! Nothing new to report except that the cold spots on my legs and feet have moved up almost to my hips and for the past few weeks my hands have felt swollen. They don't look swollen but I can't wear my wedding ring. It seems my legs have reached the same plateau as my arms in that they are ok as long as I don't do anything requiring strength. I still have to take it extremely easy when walking but at least I haven't needed the wheelchair or walker for the past 4 days. This definitely is related to how much I try to do. I suppose if I had a job modeling hunting clothes, sitting in a canoe in a department store window, I'd be ok LOL!
May 21, 2002:   (11:45 am) The verdict is in. I'm switching back to Elavil for depression. Zoloft was giving me too much of a case of the 'quick step', which is one of its side effects. I'm also going to use Clonazepam at night for sleeping since it's working really well. Physically, my legs are still weak but haven't locked up in a few weeks. It seems the weakness/pain is wavering back and forth between the arms and legs a lot more; in addition to the hips and rear. The arm symptoms are definitely on the increase again. Most of the pain/almost cramping seems to be centered in the upper inner thighs lately. The cold spots continue off and on. The other day both my kneecaps were freezing. I still have very little energy so I don't believe the Elavil had anything to do with that before.
May 13, 2002:   (9:08 pm) More unusual stuff yesterday. Both my hands were tingling for a few hours. For the past 3 days I've been taking Clonazepam at night instead of Ambien and have gained about 3 to 4 extra hours of sleep per night!! Ambien was putting me to sleep ok but just wasn't keeping me there.
May 09, 2002:   (8:22 am) The past few days have been unusual. I've had more general weakness in my arms, hands, shoulders, and neck. I'm feeling a lot of soreness and stiffness in my neck too. My grip strength is very low right now. I can barely squeeze an aluminum can without feeling the stress in the muscles. It's like the muscles are saying, "Hey, don't do that or we'll quit!" More vibrating in the leg muscles. Walking varies from slow to very slow and painful. The pain moves around from the middle of the frontal thighs, to the hamstrings, quadriceps, the upper/inner thighs and around to the rear (glutes). The fatigue is as bad as ever.
May 04, 2002:   (9:53 pm) I've got my arm and hand back after sleeping for a while. They are both extremely weak. I expect they'll be that way for the next few days based on the last two similar events (see 1 Dec 2001 & 19 Apr 2002). I can't figure out what this is called. Every time it's preceded by the afflicted arm shaking pretty good for about 10 seconds. The shaking stops and the weakness/paralysis starts. If anyone knows what this is please tell me.
May 04, 2002:   (2:03 pm) i've lost the use of my left arm and hand again. about an hour ago. i won't be doing much the rest of the day. probably take a sleeping pill and try to go to sleep.
May 03, 2002:   (12:43 pm) My legs are still very sore, painful at times even without movement. Yesterday I had an increase in the cold spots in my feet and that 2nd toe on my right foot was numb most of the day. Still very exhausted. I also seem to be having an awful lot of indigestion the past week or so, almost like heartburn. I'm still unable to use my arms for anything involving strength. The 'burn' builds up immediately if I try. My triceps are especially sore today and painful when flexed; and this is a first! Walking is very slow. I'm also feeling a mild soreness in my neck today. I continue to having occasional slight swallowing difficuly. I notice it mostly when I lay down.
May 01, 2002:   (9:39 pm) I'm done for the night! I laid down for a nap around 1 or so. When I got up my legs were extremely sore with that almost cramping feeling. Baby step time again. I still can't use the wheelchair (though I needed it) because my arms are still too sore. Also feels like my left rear is full of lead again. My vision is blurring slightly off and on too. Bad fatigue. Good night!
Apr 30, 2002:   (11:09 am) So far my sleep is still in the bucket! The Ambien seems to work well for getting me to sleep, I just don't sleep that long. Went down around 10 pm last night and was up at 2:30 am! I was awake for a few hours and then slept for another 2 hours. My arms and legs are real sore, almost painful when I use them. It still feels like I get an instant lactic acid buildup shortly after contracting the muscles, either arms or legs. I haven't had any lockups in the leg department in a few weeks now. I think it's because I was so worn out from Walter Reed I've just been taking it extra easy. A few times I've even been woken up with my legs convulsing. No cramps yet, thank God.
Apr 26, 2002:   (6:31 am) Saw my Rheumatologists again yesterday. He put me on Zoloft to try and fight the depression that seems to be setting in. If I had to point the finger at depression I'd have to say the biggest cause is the health care system. I feel like I'm in some kind of endless diagnosis loop. He agrees I need to see a mito specialist. Now I just have to find one since there doesn't appear to be any listed in Tri-Care. Physically and mentally I'm still whipped. The soreness in my upper thighs is bordering on constant pain now and I'm still unable to use the walker or wheelchair by myself because of the intense burning in the arm muscles I get when I use them. My legs always burn now. I had another whole body convulsion the other day when I was laying down. Just a single convulsion. That's it. But it shows me it's still there. The breathing resistance seems to improve the more I sleep so I'm wondering if it's just fatigue related.
Apr 23, 2002:   (6:46 am) Yesterday the heavy feeling in my chest was back again. Seems like I'm having a harder time breathing. Not gasping or anything, just like a slight resistance. That's how it feels today too. The burn is really bad in my thigh muscles. The itching continues off and on, as do the cold spots on my legs and feet; mostly the feet lately.
Apr 21, 2002:   (9:28 am) WOOOOHOOOOOO!! I slept for 9 hours straight last night!! That heavy feeling is gone from my chest and my breathing feels much more normal! My legs feel a little shakier than they have been, but hey, I'll take that little improvement in my breathing for sure!! I was starting to get a little worried about that. I can still feel the remnants of the arm episode the other day (really weak), but even that is a lot better. We'll see what the day brings.
Apr 19, 2002:   (12:04 am) Another bad day yesterday. The good news was I slept for 5 hours straight before waking up the first time. Though when I did wake up my left arm was itching like mad. I took an allergy pill and that helped, both with the itching and letting me get back to sleep. Throughout the day I napped four times. Around 4 or so I was trying to unstick a yard spreader, the part that controls the flow. Within the hour I could barely use my right arm or hand. Just like the event that happened to my left arm and hand on 1 Dec 2001 (see below). It was so bad I could barely hold my fork to eat dinner and had to have everything cut up for me. I went to bed shortly thereafter and now I'm up again. Also it seems like I have a "heavy" feeling in my chest ever since the Walter Reed trip. Wonder what's up with that?
Apr 17, 2002:   (8:56 pm) Last night was the first night using Ambien for sleep. I slept for about an hour and a half, was up for two hours, then slept for another 3 hours. I'm sure going off Trazodone has something to do with this so I'll give it a few more days for my body to settle before asking for a heavier dose. My arms and legs are still very sore from last week. I'm still unable to use the wheelchair or walker. As for my legs, I think there may be some permanent damage from all the walking I did at Walter Reed. At times it feels like the upper thigh muscles are tearing. I'm also getting mild spasms in the middle of my back now. I'm taking it VERY slow so I can rest as much as possible. I have an eye exam on the 22nd and will see my Rheumatologist again on the 25th. Overall I feel very bad and extremely fatigued.
Apr 14, 2002:   (8:39 pm) Just got back from Walter Reed Army Medical Center after spending a week there. The good news is they found no sign of muscle or nerve damage, meaning no MS or inflamatory myopathies. I'll update the Test Synopsis page tomorrow. Meanwhile, it's back to the drawing board. This past week has whipped the hell out of me. Four neuro exams plus the nerve studies *OUCH*. The first day there I was using the wheelchair to get around. After the first neuro exam my arms were too sore to continue using either the chair or a walker. My muscle strength was good during the tests, it just hurt like hell to use the muscles. I'm walking like a 90 year old man too. I did way too much walking there. My legs are totally burnt out. Next we'll look into the possibility of this being stress or mitochondrial defect related. So far not a single test has been done correctly for mito disease. The Walter Reed trip was a long one, but beneficial. Their Neuro crew seemed extremely thorough. I have a lot of faith in their findings as far as what they ruled out (standard neuropathies and inflamatory myopathies). I'm more than a little disappointed that their next step was to send a psychology student to see me.
Apr 3, 2002:   (8:29 am) I managed to sleep for 8 hours last night. Even with that, my stride length right now is about 8". I'm still recovering from the neuro exam on Monday. If a neuro exam were performed right now, a marked difference from Monday would easily be seen in both strength and mobility. I can barely walk heel to toe, and only with a great amount of imbalance. I can't even straighten out one of my legs from a sitting position and my bicep muscles still feel like they're full of lactic acid. The soreness has dissipated from my hips and rear about 50% from Monday night, but it's still there. I have mild tingling in the toes of both feet. Any day that starts out like this will only get worse. I feel bad.
Apr 1, 2002:   (6:35 pm) The soreness from today's minor neuro exam continues to increase. My upper thighs are about toasted and my arms are sore all the way down to the wrists. Even my hips and rear are becoming extremely sore. Most of the time when I use the wheelchair it's to prevent this from happening. When I get this sore I actually require it. I'm about there now. Understand when I say 'sore', I mean a severe burning ache that elevates quickly to sharp intense pain when I attempt to push the limits of my mobility. Right now I have to use baby steps to walk at all.
Apr 1, 2002:   (4:58 pm) I'm still here! They decided not to admit me today but are working on a medivac flight to Walter Reed for Thursday. Hopefully I'll know more tomorrow. I found out today that the itching I'm experiencing may be Dysesthetic itching, commonly experienced by MS patients. Funny how Elavil is one of the drugs used to treat it and I really noticed the itching after stopping Elavil. My upper thighs are extremely sore from the neuro exam today, with the arms a close second. No wobbling today though! We did use a wheelchair for most of my travel so I'm sure that helped. The tingling is still strong in both feet today. Both feet feel warm on the bottom too.
Mar 29, 2002:   (9:05 am) The wobbliness is back with a vengence today. The fronts of my thighs are REALLY sore too. I've noticed lately that I seem to be itching a lot, which someone tells me is an MS sign. I wouldn't be surprised. Monday I'll be checking in to the Pensacola Naval Hospital. I have no idea how long I'll be out or when/if I'll have internet access. So if you e-mail me Monday and get no reply, that's why.
Mar 28, 2002:   (9:58 pm) The wobbliness wasn't as bad today. It does seem to be directly related to the amount of activity I do. The doc didn't seem to think it had anything to do with going off the Elavil or a side effect from the Trazodone.
Mar 26, 2002:   (10:24 pm) That wobbliness is worse today. I'll be calling the doc in the am. I did a bunch of research on Parkinson disease, but I can't find anything than mentions the weakness I've experienced as being one of the symptoms. I'm starting to get a little worried here. Also, the tingling in my feet almost feels like it's turning into a warm numbness. Cold/warm, tingly,numb; I'M LOSING MY MIND!!
Mar 25, 2002:   (6:50 pm) Another first today. My walking is really funny. Not funny haha, but funny wierd. You would almost swear I had Parkinsons or something. I'm wobbling like crazy! The faster I try to walk, the wobblier I get. Got that vibrating in the feet today too. On Monday I'll be checking in at the Pensacola Naval Hospital. From there I'll be sent to Bethesday or Walter Reed, whichever they decide. Should be an interesting trip. I just hope I have internet access wherever I end up so I can keep in touch with work.
Mar 21, 2002:   (6:22 pm) My Rheumatologist called today. He's trying to determine if there is enough of my biopsy tissue leftover at AFIP (from my arms) to have it tested for mito-related diseases. From what I've read and been told we may need to do a live tissue study (vice frozen) in order to get results. He agreed to stopping the Elavil and using Trazodone for sleep. A lot of people have said that Elavil leaves them feeling drugged the next day so I'm switching to see if it impacts my fatigue any.
Mar 19, 2002:   (8:00 pm) Today was another miserable day. I had a major muscle spasm in my left leg that went all the way up to the groin. *ouch* A good friend took my son and I to visit mom in Pensacola. Looks like she'll be out tomorrow after one more night of observation. Walking is extremely difficult today so we took the wheelchair to the hospital. I've noticed that my near vision seems to be getting a lot worse too. I'm having a hard time even reading my watch unless I hold it at arms length. More of the cold spots on the legs/feet today and the lower lip continues to go numb off and on.
Mar 17, 2002:   (10:04 pm) Today was miserable. My wife is back in ICU for her heart and I've only been able to catch about 4 hours sleep since taking her to ER. That doesn't work for my muscles any more. Tomorrow she'll be 65 miles away having a heart cath and I don't know what I'll do. I just can't get around like I used to. I broke the knob off the washing machine too. Somebody shoot me.
Mar 15, 2002:   (10:05 am) Today is going to be another bad day. I couldn't even walk halfway down the driveway just now. On the way back up my steps began getting smaller and smaller until I had to stop. I've noticed the cold spots appearing more and more frequently now. Seems like it stays either around my feet/ankles or on the inside of my knees, usually the left knee. My lower lip is still going numb. I'm experiencing more and more of the vibrating feeling in my lower legs and feet now. Seems like it's becoming more of a 'tingling' too.
Mar 13, 2002:   (9:11 am) I saw both of my doctors yesterday. My neurologist was thinking about trying IVIG treatments (about 14K a pop) but didn't think it could be justified without a firm diagosis. That's ok by me though. After the prednisone trial I don't think I want any more drugs UNTIL we get a diagnosis. My rheumatologist wants to work with the woman who runs the Mitochondrial Disease Outreach Center (MITODOC) here in Florida. She is calling him today. We did some additional labs yesterday based on her recommendations and will set up for a new MRI. Physically, yesterday was tough. Used a wheelchair at the hospital and ended up using it last night too. I always get extremely sore after all the pushing and pulling from strength tests. My strength was about half of what is was at my last appointment. I couldn't stand up without using my arms.

Looking back, I was definitely moving easier on the prednisone, but I don't think I should have been. I could still feel the weakness and the sensation of having lead in my rear. It was almost as if the pred numbed the normal sensations, and it definitely caused a few I didn't have before. Today I'm starting on CoQ10 and Alpha Lipoic Acid based on the MITODOC recommendation. CoQ10 is an enzyme supplement and Alpha Lipoic Acid is an antioxidant that have been shown to have great value in patients with mito diseases. It can't hurt and is actually very good for muscles and the heart.

I'm glad we're looking in this direction now. Too many lights were going on as I looked up the different diseases and symptoms. One thing about mito diseases, normal tests won't work and drugs normally used to treat other muscle diseases can have really adverse affects (like prednisone). So far, all the test results I've got back are consistent with a mitochondrial disease. We just need to do some specific testing.
Mar 11, 2002:   (9:51 am) FINALLY! A breath of fresh air! I found a doctor via the web (thanks to some friends providing links) who specializes in Mitochondrial diseases, or basically, a metabolic myopathy. We talked on the phone for about 30 minutes. It was so nice to have someone say something back that appeared to recognize what's going on with me. On the bad side, Mitochondial diseases are progressive/degenerative and there is no cure. On the good side I may have a mitochondrial defect (vice an actual disease), which can be managed to some degree to improve quality of life.

Overall today has been pretty poor. Walking is slow with short steps. Nothing has changed since the prednisone administration except for the past two weeks I've been somewhere in the twilight zone and felt weaker than I have to date. Also, during the prednisone period I've experienced sharp pains in different areas of my knee and leg joints and muscles where I've experienced nothing prior; blurred vision; a mild feeling of heaviness in the center of my chest; sleep problems; increased buzzing or vibrating feelings in my legs/feet; extreme muscle shaking on my hands and knees; cold spots on my knees and around the ankles/feet; and just an overall feeling of fatigue that seemed heavier than normal and different. Hard to describe it actually.

I've added a Clinical Review link up above where I will attempt to document all the events in my life which may be related. Again, this is for physician review primarily.
Mar 09, 2002:   (9:00 am) Just took my 13th dose of pred. So far I've experienced nothing I can really call improvement. I gotta tell ya, this drug will put you in another time zone!! Physically, I'm still weaker overall than I was before I started it. Lower lip continues to go numb off and on. I seem to be getting a lot more of the vibrating feeling in my thighs and even down to my toes at times. My arms are sorer than usual but I think that's from having to use the walker so much lately. I did notice a slight improvement in my vision this morning, so hey, I'll celebrate that one today. My sleepability has been really out of wack since starting the pred. I know, new word; sleepability. Yesterday was the first day I've been able to go back to sleep right after getting up to take the pred. Though I'm exhausted most of the time, I haven't been able to nap since starting the pred either. I'm getting cold spots, especially around the feet and ankles. Also around my knees. Weird too. It actually feels the cold is radiating from the inside out, instead of how you normally feel cold. It's not turning blue type of cold, but pale. It's not necessarily bilateral either. I've also felt my heart racing from time to time. I think I'll start taking my blood pressure a few times a day to see what's up. Enough for now. My body is going UGH and my mind is somewhere else telling me to go, go, go!
Mar 06, 2002:   (9:51 am) Reached my Rheumatologist, the Neurologist isn't in today. He lowered the prednisone dose to 40mg to continue the course thru March 10th. The blurred vision is supposed to go away after a day or two.
Mar 05, 2002:   (10:37 pm) Today has been another REALLY bad day. Used the wheelchair about 90% of the time. The leg weakness is increasing, which could be a side effect of the prednisone. Over the past few weeks I've noticed an increasing difficulty reading small print up close. Tonight my regular vision started getting a little blurry. I'll be calling the doc in the am before taking that next pred dose.
Mar 04, 2002:   (6:36 pm) I hadn't used the walker all afternoon so I decided to test the waters. My wife was sick and my son needed to be picked up from band. So ... got in the car, picked him up, got out of the car. Probably less than 30 steps later I'm back in the wheelchair. My Rheumatologist called while I was gone and between him and the Neurologist they basically give up on me. So I'll be looking for a round trip ticket to Bethesda soon. :(
Mar 04, 2002:   (12:32 pm) Woke up early for my 6th day of prednisone. Both hips were extremely sore and mild soreness on both upper thighs. Had breakfast, took the pred and went back to bed for a few hours. Walking is still slow but thus far today I haven't needed the walker. So maybe that's a good sign! Walking still feels clumsier than usual, as it has since the 2nd day of being on the prednisone. The weakness is still there, it just feels 'different'.
Mar 02, 2002:   (7:07 pm) Now I'm more confused than ever. Or maybe that's just the prednisone. Today I woke up with light soreness in the upper thighs. After moving around for a bit it went to my left hip again. I've used the walker most of the day. My legs feel strange and real wobbly. Still got that caffeine high going from the pred too. It will be interesting to see which direction the docs head on the 12th regarding further testing. The lower lip continues to go numb occasionally.
Mar 01, 2002:   (7:19 pm) It appears I've joined the Prednisone roller coaster! I've just woke up. So far there has been no change in the weakness except now I'm getting shooting type pain in areas of the muscles I haven't felt anything before. I was up all last night since running out of Elavil and the script didn't get called in by the hospital until this morning. Pred really makes your mind spin! Mary got the Elavil for me this morning and that put me out finally, until just now. My Rheumatologist called this am too and said that based on the last EMG he's not leaning towards an inflamatory myopathy as much. I think the Neurologist mentioned some type of myelitis, which may be associated with MS. Usually though, the onset of myelitis is quite sudden so he's a little baffled about my case. So, back to the drawing board. I think the only thing we've recognized for sure is the Restless Leg Syndrome. ...
Feb 27, 2002:   (4:51 pm) Put a fork in me, I'm done for the day. I was using the walker earlier but that was bothering my arms too much. I'd say I shuffled no more than 100' all together today. Wheelchair time. Laying on my back I can't even lift either leg more than a few inches. Even that takes a LOT of effort. My feet still feel like they're in a refrigerator and my lower lip continues to go numb on the right side from time to time.
Feb 27, 2002:   (1:55 pm) I tried to lay down for a while but something new popped up. My feet are frozen, as in cold. This is in spite of having ski socks on, even under the covers with flannel sheets! My whole body feels very weak right now too. The last time I had a nerve conduction test I ended up using the wheelchair for the better part of six days. Yesterday was far worse than the last time.
Feb 27, 2002:   (12:42 pm) The prednisone seems to be lighting me up like I'm on a caffiene high. Part of my lower lip keeps going numb on me. I think that happened before I took the pred though. The back of my thighs are aching like all get out and I'm now getting small shooting pains in different areas of muscles I've felt nothing in before. I just wonder if this is from the pred or from the fairly severe nerve conduction test I had yesterday.
Feb 27, 2002:   (6:45 am) Woke up with the upper thighs pretty sore. Took the first 100mg of Prednisone. We'll see what happens.
Feb 26, 2002:   (4:46 pm) Another day of not doing too well. Saw the Neurologist again today and had more nerve conduction tests done. *OUCH* Still no diagnosis. From all the tests we still can't rule out MS. Tomorrow I start on 100mg of Prednisone for 10 days to be followed by 40mg for four days. We'll see if the pred does anything for my strength. On the 12th of March I see the Neurologist and the Rheumatologist again.
Feb 25, 2002:   (4:21 pm) I had an Evoked Response test done today at West Florida. Given a choice between a standard nerve conduction test and the evoked response test, I'll pick the nerve conduction test any day! *ouch* Tomorrow I'll see the Neurologist and we'll discuss the results. I'm having a really bad walking day. I must have moved around too much yesterday. Woke up with the rear and rear upper thighs really sore. I wasn't even able to put on my own socks and shoes. I'm using the wheelchair today. :(
Feb 23, 2002:   (1:18 pm) Nothing special the past few days, just more of the same. Even the simple act of squatting down is enough to wear out my legs for the day. After 10 hours of sleep I didn't feel too bad but after squatting down a few times to tap a few nails into some weather stripping I'm about ready for the walker. The upper and inner thighs are extremely sore. Feels like a burning soreness and the strength I did have is now gone.
Feb 18, 2002:   (6:51 pm) I give up for the night. When I was called for dinner I only made it halfway to the dining room before I called for the chair. It gets to a certain point and it's not worth it to even try using the walker.
Feb 18, 2002:   (6:02 pm) It's taking less and less to completely wear my legs out. Less than an hour of not using the walker today was all it took. That was very slow walking too, not even on hills or anything. I should probably be in the chair to conserve what I have left but I'm getting the feeling that I should make the most of being able to walk at all while I still can. Doing more research I found that neither IBM (Inclusion Body Myositis) or MG (Myasthenia Gravis) show elevated CPK levels. I also saw where a biopsy is of no value for diagnosing MG. With IBM it's definitive. So if it is PM (Polymyositis) then I'm one of the very few who have normal CPK. That is relatively uncommon but it does happen. Right now I have to put my hands on my knees and lean forward in order to even stand up. Sitting down is the same.
Feb 15, 2002:   (4:24 pm) Got the results back from the MRIs today. They were unremarkable (meaning they didn't show anything significant). They did show sinus inflamation from this miserable head cold my son gave me. Also, all the blood work came back within normal limits. When I woke this morning my rear felt normal and pain/weakness was back in the left hip. Also the upper front of both thighs are sore. I'm using the walking just because it feels like my hip wants to give out. Looks like MS is losing the diagnosis battle. My chips are still on PM.
Feb 14, 2002:   (5:43 pm) Went in to the base this morning for the MRIs. Had both a brain and cspine scan done. Hopefully I'll have the results tomorrow. At this point I don't care what this turns out to be. I just want it identified so we can start treatment. As a precaution we took the wheelchair (and used it). For some reason my right rear is extremely sore and I'm using the walker. I'm just glad I haven't started falling down yet. Had some more blood work done so I'll be looking for that CPK level. With PM it gets pretty high. Normal is 250 or less. However not all PM patients have had elevated CPK. Just like 5% of MS patients never develop lesions (what we're looking for in the MRIs).
Feb 12, 2002:   (1:39 pm) After roughly 11 hours of sleep I'm back to just walking slow. My left upper thigh is extremely sore and my feet feel like they're full of lead, but I'm able to walk without assistance. I did end up using the wheelchair later yesterday too.
Feb 10, 2002:   (1:10 pm) I went to sleep about 1 am I think. Woke up at 3:30 with the Restless Leg junk jumping all over my legs. Took a Clonazepam and went back to bed about 30 minutes later. Slept until noon. I'm able to slowly walk again without support *YAYYYYY*. The left hip and left outer thigh almost feel like someone replaced the muscle with lead while I was sleeping. I'll be taking it extremely easy today hoping not to incur any additional "penalties". **added note** I did end up using the wheelchair some late yesterday. I'm at the point now (4:27 pm) where I'm ready for the walker today.
Feb 9, 2002:   (1:38 pm) Slept for 8 and half hours and woke up still very weak. I'm able to use the walker now but it's probably a mistake I'll pay for later today. Both hamstrings are pretty sore today, not so much in the hip.
Feb 8, 2002:   (8:05 pm) This is the first time the severe weakness has lasted this long. Today is another wheelchair day. I've got a walker now too but today was not a good day for it. At times it feels like the muscles in my legs are vibrating. Not numb or tingling, just vibrating. Hopefully tomorrow will be better.
Feb 7, 2002:   (3:00 pm) Another red flag day today. I woke up weaker than normal. The past few hours my walking capacity has decreased to where I can move my right foot about 3-4" and then have to bring the left foot even. Feels like the weakness is particularly strong in the left hip and hamstring.
Feb 6, 2002:   (6:30 pm) Yesterday caught up to me about 5 pm. I'm back in the wheelchair. I haven't been climbing on any ladders either - trust me! It just hit all at once too, unlike other times when the regression was noticeable over a period of time, however short. The right arm is extremely sore from the EMG yesterday. Like usual though the fatigue hits pretty hard when the extreme weakness does. This will wrap it up for me for tonight.
Feb 5, 2002:   (5:36 pm) Today was a mixed bag of tricks. First the success! I managed to walk all the way to the doctors office today, and back. Quite a feat considering my last two visits. Had a nerve conduction test done, results normal. Had a EMG done of my whole right side, results mildly abnormal. On the 13th I go back for an Evoked Response test which measures brain activity. Also more lab work and getting set up for an MRI of both my brain and spinal cord. It looks like we're trying to rule out MS (multiple sclerosis). After reviewing the symptoms, progression, etc. of MS, I think that may be a possibility, though my chips are still on PM. All the symptoms continue as previously reported. Nothing unusual the past few days. The Neuro doctor upped my Elavil to 3 a night and if that doesn't work in helping me sleep better, then go to 4 after a week.
Jan 29, 2002:   (19:53 am) I was wondering if the Elavil was causing me to be in a drug-like state throughout the day. So last night I didn't take it. Had a horrible time getting to sleep and only slept for about 6 hours. The result is that I'm extraordinarily sore this morning and moving around like an 85 year old man. From a trade-off prospective I think I'll take the Elavil tonight and talk to the doc about possibly switching to something else to help me sleep at my next appointment. Also, I've had to use my arms so much the past week or so to get up and down that they're now just as sore as my legs all the time, mostly in the triceps and forearms.
Jan 28, 2002:   (5:58 pm) More weird stuff here. I'm not even sure it's related because it doesn't fit in the PM symptom list. Twice yesterday the muscles on the right side of my neck spasmed, causing a major tilt of my head both times. One other time I felt it was going to happen, but it didn't. Also, the past two days I've woke up with the second toe on my right foot numb. I've also had a lot of weakness and that "almost" cramping feeling in my groin muscles. Turning over in bed has become difficult. No change in the constant fatigue.
Jan 24, 2002:   (12:01 am) Today was another first. I woke up with a headache and both my knees were extremely sore. The knee pain went away after a few hours but the rest of the day I was walking REALLY slow. It was close to a wheelchair day, but not quite. Even tonight I wobbled a few times when trying to stand up. The fatigue was especially bad.
Jan 21, 2002:   (12:41 pm) Sleep seems to no longer diminish the soreness, especially in my legs. Even the simple act of sitting in and getting up from a chair stresses the muscles now. I actually kind of "roll" in and out of chairs. Getting dressed/undressed even wears me out. My arms have been especially sore the past few days though I can't think of why. I'm starting to wonder if I've been subjected to a gypsy curse, as in the movie "Thinner" LOL. Though being a little thinner at this point would be a blessing (white man from town). I'll also be asking my doc for something to keep my sleep habits more regular. Lately I've been so out of wack I sleep until 1:30 in the afternoon and then I'm up for a while, nap for a few hours, up again until 5 am! I need to get back on track.
Jan 13, 2002:   (11:57 pm) The weakness and soreness seem to last longer and it's taking less to get that way. I've had more involvement in the calf muscles the past few days. Only mediocre soreness but I can tell it's related. The hips are constantly sore now as well as the lower back. Also feeling it more in the forearms. One muscle keeps jumping around up near the wrist of my right hand. It's not painful I just can't tell what causes it or if I'm doing anything in particular. It happens mostly when I lay down with my right arm extended.
Jan 08, 2002:   (7:07 pm) After a few days of doing practically nothing, I'm back to a semi-normal state. Walking is always slow now. The soreness keeps moving around as it sees fit. Back, legs, arms, hips ... I haven't associated any particular location with any phase of the moon yet, but I'm trying. The weakness is about the same as it was last week, no big changes there. My medical board letter was finished yesterday so I guess the clock is ticking. If anyone wants to take any bets on which comes first, a diagnosis or retirement, I'm going with retirement. Some people go years and up to a dozen biopsies before being diagnosed. I probably won't see a leg biopsy until March. I can't wait (yea right).
Jan 03, 2002:   (11:05 pm) Today I woke up feeling pretty good again. Drove myself in to work to see my DMO for a checkup pursuant to submitting the medical board package. Walking was still slow and I used the cane. Part of the checkup involved a typical neurological exam (all divers know this). A little pushing and pulling on the arms and legs to check for weakness, numbness, et al. Not a big deal really. I made the mistake of using the stairs to get up to the docs office rather than driving around the building. Within an hour or so I could barely move. My arms, legs, and rear were the worst (sore) I think they've all been simultaneously. Went home, went to bed and slept for about 6 hours. I can still barely move, but the soreness has dissipated to a marked degree. Except for the rear *ouch*. Sitting on it doesn't help either. I think it's time for my pills and a 12 hour snooze.
Jan 02, 2002:   (1:34 pm) The past two days have been bad. On the 31st I didn't feel too bad so I decided to tackle a project I've put off for months, which was running some speaker wire down the inside of a wall for home theater speakers. This meant I had to go up and down a 8' ladder about half a dozen times. ANOTHER BIG MISTAKE! I did the job but within an hour I was needing the wheelchair. My upper inner thighs both felt like someone had been beating on them with a bat. When I awoke after sleeping for 12 hours my thighs felt ok again, still very weak, but the soreness was now in my rear! Again it felt like someone had been whacking me with a bat. Walking was very very slow but I could do it. [note to self - NO MORE LADDERS]
Dec 30, 2001:   (11:34 am) My legs continue to weaken. Since the last entry I've probably spent three quarters of my time in bed but regardless of how much sleep I get, I wake up with the legs already feeling weak. As I sit here the main point of soreness is the right hamstring. The point of focus seems to move every day. Walking was slow from the time I got up. It's now rare that I don't use the cane for extra support. At least the Restless Leg business seems to be under control, thank God!
Dec 26, 2001:   (9:39 am) The past two days have been interesting. The soreness and weakness are not necessarily coordinated. Christmas Eve day I spent most of in bed with extreme soreness in the quadriceps. Yesterday I had extreme soreness in the upper thighs. First time I felt anything specific there. Again I spent most of the day in bed. The overall weakness in the legs seems to be gradually increasing. Nothing really in the hips or lower back for the past few days. I've probably averaged between 16 and 18 hours of sleep a day since the 24th. Not all at once. After I'm up for roughly 3 or 4 hours the fatigue will put me down again. The arm soreness comes and goes in relation to attempted use or activity, which I really try to limit. It's difficult to limit the use of my legs.
Dec 23, 2001:   (8:22 am) Time marches on, and so apparently, does this disease. Every morning I wake up now it's like I can feel my legs a little weaker than before. When it first hit my legs last month, even after a horrible day I would wake up the next day almost feeling normal. Of course walking around a little would quickly remind me of what was going on. Today I feel the marked weakness, as with the arms. Definitely a red flag day. I'll be taking it extremely easy. I can't help but wonder though, being this could be a potentially fatal disease, how far it has to progress before it's considered more than "routine". My next appointment isn't until the 5th of February.
Dec 16, 2001:   (8:22 pm) Today I woke up not feeling too bad. I decided to try and straighten out the garage a little. My son did most of the work, I directed traffic more or less. All I did really was knock a few cobwebs off the walls with a broom and move some really light stuff. BIG MISTAKE! My legs are really weak now, it feels like my left hip wants to give out, and I'm sore from shoulder to shoulder. I can barely walk using my cane and had to get help to get up out of a soft chair.
Dec 15, 2001:   I think I've finally found a way to describe this thing. Think of your muscles as poorly maintained rechargeable batteries. My charger is sleep, 10 to 12 hours worth. Sometimes more. The "charge" longevity is based on my degree of inactivity. As with "bad batteries", even if you leave them on the charger for a week they never reach full capacity. Activity involving muscle intensity of any magnitude quickly (almost immediately) drains the batteries of the muscles being used, leaving them with practically zero strength. See the examples from November 21st and 01 December below. I've quickly learned to severely limit my activity, or pay the price.
Dec 09, 2001:   Nothing significant to report since the last entry. The overall weakness and soreness continues. Some days it feels like my legs are weaker, other days it's the arms. If anything is changing, it seems the hips are growing weaker. At least the restless leg syndrome is no longer an issue. The Clonazepam seems to be working great for that. The overall fatigue hasn't changed a bit. Still overwhelming.
Dec 03, 2001:   Follow-up at West Florida today. Looks like we've agreed on myopathy, just have to nail down what type, ie. inflamatory (polymyositis is one) or metabolic. Tried to walk from parking to the hospital again and only made it half way :( Got a script for Clonazepam for the Restless Leg Syndrome to be used as needed. Doc also suggested a cane may be beneficial during the good leg days. Here's the current plan:

  • Complete another neurological workup at West Florida.
  • Have an MRI done on the right thigh to be followed up shortly by a biopsy.
  • Dec 02, 2001:   12:18 pm ... Well after sleeping for 10 hours straight the cramping feeling is gone from the hand and arm. The weakness remains. The legs are really weak today and I'm feeling more of a twinge in my hips as I try to walk. Feels good to have the kids push me around in the chair. I don't intend to post every day but I will post as symptoms and conditions occur.
    Dec 01, 2001:   9:53 pm ... another first. i'm typing this with my right hand because my left arm and hand are useless. all i did was pull a stubborn power plug from the back of a cd drive. my left arm started shaking. 30 minutes later i can do nothing with my arm or hand. feels like they want to cramp and have no strength. can't even make a fist. hope this doesn't last long.
    Dec 01, 2001:   Didn't sleep well at all last night. Dreamed of owning a Harley and being in a gang. It was fun! I just walked (slowly) to the end of my driveway to retrieve the garbage can (on wheels). What's significant is that my legs feel like 2 x 4's and I never realized how much of a grade (incline/decline) difference there is on different sections of the driveway. I'm also feeling more of a "twinge" in my hips when walking, more on the left. The "chair" is looking awful good about now. Fatigue is now constant. I've only had mild soreness in the neck and shoulders so far, nothing that really inhibits movement. I noticed over the past few days that when laying in bed at night that when I swallowed, it was like I had a "clicking" sound going on in my throat and somewhat of an effort was involved. This comes and goes. No trouble eating yet (thank God LOL).
    Nov 30, 2001:   Thanks to my Diving Medical Officer at work I finally got a wheelchair. It wasn't electric so I'll have to use my arms as much as possible *ouch*. I feel much better not having to dread the bad days as much. At least if it hits my arms and legs at the same time, someone can help me around in the chair. Funny thing was the wheelchair has the same name as my car, a Tracer LOL!!
    Nov 23, 2001:   We got up early in order to drive the 55 miles to West Florida. Made it there in plenty of time, parked in handicapped parking. My legs were still very sore but I had to see if I could make it up to the doctors office (I'm stubborn). I couldn't make it. Every step I took seemed to get smaller and smaller. My wife wheeled me the rest of the way up where I sat in a wheelchair only to be told my doctor was out having a baby with his wife (understandable) and that nobody else was available to see me (NOT understandable). We went home. The next few days were up and down with even the mildest exertion resulting in "baby-steps".
    Nov 21, 2001:   I woke up around 11:30 am, feeling especially fatigued. I noticed an increased tightness and soreness in my legs. Within the hour I could barely stand at all. My legs just didn't want to do it. It wasn't really painful, my ability to physically move my legs normally just wasn't there. Walking involved shuffling my feet about 2 to 3 inches at a time and I had a constant feeling that they would collapse. At this point I was getting the sense that this was indeed very serious and any hopes of all this being transient effects of any medication were dissolved. I began asking for a wheelchair because of the severe difficulty in getting around. We also set up an urgent appointment at West Florida for the day after Thanksgiving.
    Nov 20, 2001:   I drove myself in to work. Walking was slow and I didn't really do all that much. Most of what I do is in front of a computer any ways. By that night however, my arms and legs seemed more sore than normal. Around this time I identified the queasy feelings in my legs, especially at night, as Restless Leg Syndrome. I finally got to sleep around 4 am.
    Nov 12, 2001:   I had a follow up with West Florida following the biopsies. During that appointment the doctor noted significant weakness in my arms AND legs. Of course the arms were still recouping from the biopsies but that fact actually had little bearing on their condition. I reported the increasing fatigue and that walking in general was becoming a concentrated effort. At this appointment I became eligible for handicapped parking.

    Pre-Nov 2001:   Starting roughly in early September I started noticing leg problems. It started as just an achey feeling, kind of like what you feel after working out with weights. I began to notice increased fatigue and a sense that my legs weren't quite my own. Especially when walking up or down stairs (which was tough) or any kind of incline. I went to the last football game of the season to watch my sons high school marching band perform and barely made it to the top of the bleachers (you really have to sit way up to see the effects of the marching). At half time we came down and that was another chore. My legs were so sore after that I sat out the rest of the game in the car. This was in late October 2001.
    Pre-Nov 2001:   In May of 2001 I was referred to the Rheumatology Department at the West Florida Medical Center. After noting the severe weakness in my arms the doctor ordered a biopsy of the bicep muscles. I had already had an Ischemic Arm Muscle test and an EMG at the Pensacola Naval Hospital. Both showed slight irregularities, but nothing that really pointed to a diagnosis. The doc I saw at the Keesler AFB hospital was the first to mention myositis to me, which led to my present belief. The biopsies (each bicep) were finally done on 18 October, 2001. According to the Armed Forces Institute of Pathology, the biopsies showed atrophy of the small muscle fibers, from what I was told.
    Pre-Nov, 2001:   In March or so of 2000 I was put on Zocor to help lower my cholesterol, which was a little high. Within two weeks I began feeling weakness in both my bicep muscles. I started feeling severe pain in the muscles when picking up objects like a gallon of milk or the coffee pot. The weakness and pain continued to progress with a few months to where I had to use both hands to pour a cup of coffee. My Diving Medical Officer at the time, thinking it may have been related to Zocor, took me off it hoping to see the symptoms go away by themselves. I believe Zocor is what triggered all this.

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