Daily Diary, August 2003 to Dec 2005
*In Reverse Chronological Order*

Dec 22, 2005:   (1:08 pm) I talked to my doc's office today about going off the Neurontin. I've experienced more severe muscle fatigue episodes, including today, since starting it. So whatever it was supposed to do, it's not. My doc agreed so I'm tapering off it starting today.
Nov 8, 2005:   (4:23 pm) My September appointment was obviously rescheduled. My rheumatologist had open heart surgery. He came through it ok but I still don't wish that on anyone. He wants to try Neurontin on me for a while to see if it helps with the pain issues. Nothing new on the office exam. I still have all the Fibro tender points. I was so fatigued during the visit I forgot to ask about another biopsy in Portland. Next time.
Sep 18, 2005:   (8:23 pm) Last Wednesday I took the last of the Requip. I saw no changes at all and the doc agreed with me to stop it. I have an appointment to see him on the 23rd. I'm going to ask about getting a referral for another biopsy; again at the metabolic lab in Portland but this time I want to go there personally vice having a muscle sample shipped from here. This is crazy but if I don't push it I may never know what's going on with my muscles.
Aug 03, 2005:   (5:08 pm) I received my biopsy results and wasn't too pleased. I created a graphic image of the report you can check out on the Test page. The link is with the bottom entry. You'll see why I'm not real happy about the results. Looks like I have another go round in my future. This time I'll see about going directly to the Portland lab for a regular biopsy instead of the needle type. Hey, I imagine if they remove enough of my muscle, this muscle disease will be removed with it! What a thought. Then again I'd end up like one of those jello molds with carrot sticks in it and that wouldn't be much fun.

In the mean time the Requip I was put on in May doesn't appear to have any effect.
May 28, 2005:   (3:34 pm) I saw my doc on Thursday about the biopsy results. My mind is really going (away). Not only can I not remember what he read to me, but I forgot to ask for a copy! It said something about differences in muscle fiber size and something about the small size of the samples. I'll have to have them fax it to me Tuesday. I do know that nothing definitive came out of it. I got an e-mail from my case manager today saying my power chair is approved! My rheumatologist is also starting me on Requip (another drug) and he's stopping the Sinemet.
May 5, 2005:   (9:58 pm) Still no news on the last biopsy. Should only be another week or so.
Apr 16, 2005:   (3:04 pm) I can say with certainty that a needle biopsy heals a lot faster than a regular one. He did make a small incision for this one and put one stitch in after he was done. After 7 days my leg is pretty much back to (ab)normal. I'm not having much discomfort at the biopsy site but I fear I'm developing a trigger point there like I did with the biopsy on my other thigh. I'm occasionally getting sharp, jabbing pains where they took the muscle.
Apr 8, 2005:   (3:50 pm) I just got back from having my 4th biopsy. This time it was a needle biopsy ... something I hadn't experienced yet. I was wide awake during the whole thing. If you can imagine something the size of a meat thermometer being stuck into your muscle ... to sum it up ... NO FUN!! I had 5 samples taken out. :( If I ever have another biopsy I'm going to insist I get knocked out first. The good news is that the courier was right there to take it directly to the lab in Portland. Hopefully we'll know the results in two weeks or so.
Mar 23, 2005:   (2:30 pm) We had to change the date on the biopsy. If they would have done it today the sample would have sat in the hospital for 24 hours prior to pickup for delivery to the testing lab, which wouldn't have been good for the sample. I'm glad they caught this. The last thing I need is another bad biopsy. It will be done on April 8th.
Mar 9, 2005:   (11:19 pm) Latest and greatest: My hands are getting REALLY red and swollen from smaller amounts of use. My fingers actually started going into spasms today from assembling a "some assembly required" breakfast bar stool. Needless to say it took about 10 times as long to finish the job. I decided to wait a few days before assembling the other one. My hands look like I dipped them in scalding water and feel like I've been playing tug-of-war with an elephant for about 8 hours with really rough rope.

The needle biopsy on the 23rd is a go. If the results show as expected, we may have a case for statin-induced myopathy thanks to Zocor.
Feb 24, 2005:   (4:58 pm) It's official, Fibromyalgia is definitely part of my diagnosis. We really knew that 2 years ago but this doc is grabbing on to it to try some new meds for treatment of the pain issues. Fibromyalgia doesn't generally cause mobility issues, especially to the extent I experience, but it definitely accounts for the muscle soreness and fatigue I have every day.

We're also setting up for a needle biopsy on March 23rd, the day before my Social Security hearing. He still suspects that Zocor was somehow involved so we'll be using the Red Oil O stain to see if lipid storage has been affected. This stain will show abnormalities which appear to be common in patients with statin induced myopathies. I feel ok about all this. It's like we're finally moving forward again.
Feb 14, 2005:   (10:45 am) My hands and feet seem to be at the top of the strange list lately. My hands become sore and swollen from even the mildest use now. Like after I'm done typing this they will be visibly red and swollen. My feet have felt like there have been waves of cold sweeping over them, especially the toes. It feels like I've just stuck my toes in a freezer. I always wear socks with my slippers now because of the cold feeling. Last night when I took my socks off my toes were even more red and swollen than my hands were! I hadn't really noticed this before but it was plainly visible last night. I see my rheumatologist again on the 24th and I'll have him take a look. It's like there is nothing I can do to warm my toes up.
Feb 06, 2005:   (12:50 pm) Last night I had a little bout of food poisoning. Almost passed out in the bathroom. Today my stomach muscles are VERY sore/painful from all the contractions. About 3 years ago I had tried to do some crunches just to see if I could. The result was the same as last night so that shows that my stomach muscles are affected by this disease as well. Ugh!
Jan 21, 2005:   (5:48 pm) I just got back from seeing my 3rd rheumatologist. He's VERY interested in the fact that all this started two weeks after being put on Zocor and even referenced a paper published with the American College of Rheumatology. So I believe he knows what he's doing and what he's looking for.

He even did the tender point test for Fibromyalgia (1st doc to actually do it) and said that this is part of the diagnosis. Only a part though. We will probably be doing a needle biopsy as soon as he can verify the right stain (Red Oil O) can be used locally to test for any lipid storage abnormality. My last biopsy didn't use the stain he mentioned. Nor any of the others.
Dec 29, 2004:   (10:40 am) For the past few months or so I've had urinary difficulties similar to what is caused by typical prostate problems (enlargement, etc.). Yesterday I saw my PCM and had the appropriate tests done (exam and lab work). All tests came back completely normal. During my online investigation of prostate/urinary problems I did come across multiple sources that say that these types of problems can also be caused by ... (drum roll) ... metabolic disease. No information about what type of metabolic disease, but it's one more indicator that we're looking in the right direction.

So, since all this started with my muscles I've had changes/difficulties with the following body systems: Eyes, hearing, gastrointestinal (gerd, urinary, etc.), and skeletal muscles.
Dec 18, 2004:   (11:34 am) Good and weird news today. First the good. Last Thursday we went down to the place that supplies the power wheelchairs and put the order in. Now it should only be a matter of the provider and my insurance exchanging the order for a check.

Now the weird news. I just added facial twitching to my list of symptoms. As I was doing so I noticed that I could smile with the right side of my face a LOT easier than the left side, doing each side on it's own. Even when trying to smile with both sides at once I noticed the left side fatigues VERY early in the process. And to think they called me "Crazy Ed" at one time. Ya think?
Dec 11, 2004:   (1:34 pm) Sad news. I talked to the Muscular Dystrophy doc the other day and unfortunately he hasn't had any experience with the Ischemic Forearm Test nor does he know who can do it around here. He did think my results were academically interesting. I really thought if anyone around here were to know about it, it would be him. Looks like my last hope locally is with the Rheumatologist I'll be seeing on 7 January. I think I've already called all the local hospitals and nobody is familiar with that test, or at least not the labs.
Nov 28, 2004:   (2:17 am) This is a strange one. Tonight I stayed up to watch a movie with my son and had a good size helping of leftovers from Thanksgiving. About an hour after I ate, my leg muscles, all the way into my feet, began vibrating. About the same time I noticed cold spots all over me. The most prominent were on the stomach, my upper thighs, my knees, and my ankles. I hadn't had anything else to eat today other than a turkey sandwich around noon or so. My stomach feels fine, not like I over-ate or anything. Just the cold spots. What brought this to my attention was the fact that I was just sitting on the couch watching the movie, and not moving around doing anything. I've had the vibrating sensations and cold spots after over-doing it, but never just from eating. At least not that I had noticed. It's almost like my body doesn't know what to do with food. I'm even feeling the vibrating in my rear and somewhat on my arms and my arms ache for no apparent reason. This vibrating sensation is really quite annoying. Weird.
Nov 16, 2004:   (2:07 pm) Yesterday was one of the worst fatigue days I believe I've ever had. I've had a rough go of adjusting over from aciphex to zantac because the zantac doesn't appear to be working quite as well. I don't know if my body just needs to adjust to it or what. Acid reflux has woke me up more than a few times lately, like it did yesterday and without sufficient sleep my muscles are totally shot. So much so yesterday that between my legs burning and being overly fatigued, I had a difficult time even getting back to sleep. I eventually did but the entire day was a waste. If the zantac doesn't start working better in the next few weeks I may have to switch back to aciphex or to something else.
Nov 10, 2004:   (5:23 pm) The past few days my upper thighs have been really sore and I can't think of anything I did to cause it. The fatigue has been overwhelming as well. This afternoon my left frontal thigh went numb again from standing up. This hasn't happened in about a year. My hands continue to be really sore and actually appear swollen.
Nov 2, 2004:   (12:06 pm) I just got back from voting and my rear end feels REALLY sore and like it's full of lead or something. Also the left side of my neck is really sore. I feel totally wiped out again.

I didn't mention this before but I heard from Source One recently that my power chair has been approved by my insurance finally. They are looking for a more local provider that is within my insurance network so that more of the cost will be covered.
Nov 1, 2004:   (12:48 pm) I think I may have found the answer (or at least part of it)!!! Myoadenylate Deaminase Deficiency is a metabolic disorder which can cause symptoms very similar to my own; it progresses over a few years or so; only affects the skeletal muscles (in one of it's forms); AND the Ischemic Forearm test we did at the Pensacola Naval Hospital would have been proof! The big thing with this disease is exercise intolerance. If what I'm reading holds up, I may have an extreme case of it.

Catch this -- On my ischemic forearm test my lactic acid rose appropriately after exercise, which ruled out McArdle's Disease and a few other glycogen storage diseases. The flip side that no one seemed to catch, was that my ammonia level went from 11 at rest to ONLY 18 after exercise; when it should have jumped 4 or 5 times the resting level! Low ammonia on that test is positive for Myoadenylate Deaminase Deficiency!!!!!

I just tried calling the Pensacola Naval Hospital where my test was done back in April of 2001 and they had no record of it. I know I was the first one done there because the head Lab Tech told me. It's important when the blood draws were done at different intervals during the test and I couldn't get that info from Pensacola. So, I'll be looking to repeat that test SOON for confirmation.
Oct 13, 2004:   (4:33 pm) Yesterday my PCM agreed to changing out the Aciphex for Prilosec OTC for my acid reflux problem. After reviewing the side effects I decided I didn't need to be taking a drug where possible effects were myalgia (muscle pain), coma, or sudden death. That and I always had a horrible taste in my mouth and my stomach always felt bloated. Just after a day my stomach is feeling better.
Oct 2, 2004:   (4:42 pm) Since raising the Elavil dose I haven't had any more itching attacks. I've also noted a slight "improvement" in how I'm feeling mood wise. So Monday I'll let my PCM know so she can change the prescription permanently.
Sep 24, 2004:   (10:40 am) I had another itching attack on my left arm yesterday which woke me up around 5:30 in the morning. My PCM agreed to up my Elavil dose from 75mg to 100mg daily to see if it stops the new attacks. Anything that disturbs my sleep is devastating to my muscles, especially after the strength tests I had at the physical therapists on Monday. When I say itching attack I'm referring to dysesthetic type itching which is commonly seen in MS patients. There is no rash or redness associated with it. Elavil is one of the drugs commonly prescribed for this type of itching. Both times I've tried to go off Elavil I began having severe itching attacks on both arms, my head, and stomach. Try to imagine a 4' alligator chomping down on your arm with really sharp teeth at about 1 minute intervals. That's how intense it is. It's so bad I draw blood from scratching. Yesterday morning I had to coat my arm with Benedryl anti-itching spray to get enough relief to go back to sleep.
Sep 21, 2004:   (12:13 pm) Here's the latest -- I have an official Case Manager from my insurance as of last week. Yesterday I had another physical therapy evaluation in support of our power wheelchair request so today I'm a zombie again. I can barely move to walk. My legs, arms, hands, and hips all feel full of lead. I have a lot of burning in the muscles which evolves to pain if I try to use my muscles more than they want to be. Even my sides and neck hurt today and those weren't even tested. Last night I was awakened by a real bad itch attack on my left arm too. That's never much fun.
Aug 18, 2004:   (7:23 pm) I've requested a Case Manager from my medical insurance. A Case Manager is supposed to help with hard to diagnose cases. My PCM and the Muscular Dystrophy Clinic are clueless about where to go with me next. The lack of a serious metabolic lab in the area doesn't help. I'm also still waiting for the Social Security Hearing. To anyone out there thinking of applying for SS disability; be ready for a long wait. It's been close to a year since we requested a hearing after being ridiculously turned down the second time.
Jun 27, 2004:   (9:12 pm) Nothing new to report except that my insurance is turning down any and all referrals, including the one for a power chair, because they say I'm eligible for VA medical care. No changes on my condition, which is good news that the progression seems to have stopped!
May 21, 2004:   (3:13 pm) On Tuesday night my daughter had her final choir concert so I had to attend. It lasted for over 3 hours (which they didn't tell us by way of any kind of schedule). I managed to make it into the theater using my cane, but almost didn't make it back to the car. It was close. My arms hurt that night from using the cane (I have to switch arms every once in a while). For the next few days my leg muscles were doing that vibrating thing again and the fatigue was so bad I slept for most of the next 48 hours. The cold spots were back real bad again too, mostly on parts of my legs but also in my abdominal muscles.

Meanwhile, my Neurologist wants to try Botox injections which my insurance declined to pay for and they also declined the biopsy in Portland, saying it was a non-network provider. I don't know about the Botox injections. I looked it up and don't see where it was designed for symptoms like mine. I'm afraid to try anything without having a diagnosis first. The Portland lab told me over the phone they did take Tricare so I don't know what's up with that. I'll have to call Tricare.
Apr 24, 2004:   (8:46 pm) I think I can officially declare myself to be in the "idiot" category after today. I tried to do some "minor" yard work. What I mean by minor is that I was using a shovel to move some dirt around in a bed where I had concrete curbing put in. Not even half shovel loads. I was also bending over to pick up small rocks and chunks of concrete. After about an hour I could no longer grip the shovel with my left hand. My thighs, hips, and rear are on fire again too. Too much stooping down. It was all so very minor. Nothing strenuous at all. I need to re-think my yard work strategy. I already pay someone to cut the grass. I can't do that any more. If my arms didn't hurt so bad I would be using my walker to get around. STILL no cramping and I STILL haven't fallen over, though I have come close to falling over trying to get out of my son's car.
Apr 7, 2004:   (3:30 pm) Just a quick note on my hands. It does appear I'm able to spend less and less time on the pc before they just get too sore to continue. It's not just the mouse hand either, like you would expect from carpal tunnel or something, but both hands. Even the fingers get sore and it gets hard to make a fist after a while. The forearms don't get real sore yet, but I can feel the fatigue.
Apr 1, 2004:   (3:13 pm) Yesterday I was shown again how little it takes to do me in. I went with my son in the Mercury Tracer to get an alarm system put in the car for him. I had to walk about 150' during 2 trips to the cash register. By the time we got home it felt like someone had been beating on my my thighs and rear with a bat again *ouch*. It was so bad I would have to say it went beyond severe burning to bordering on plain old pain. Still it appears my condition has leveled out. No better and maybe a tad bit worse, but nothing I would really call progression. The pain and burning is based on how much I try to do. Period. I am working on getting my next biopsy done at a metabolic clinic in Portland, Oregon. That will tell us for sure if it's mito disease or if I need to look in another direction. I'm still placing my chips on mito disease though. There have been too many things that tie into it.
Mar 16, 2004:   (10:40 am) I saw the doc at the MD Clinic again yesterday. Still no dx. He did write an order for a power chair so I can finally get some personal freedom. Now I just need to find out which hoops I have to jump through to actually get the chair. He also ordered another biopsy. I'll be looking for a place that does live tissue biopsies looking for mito disease. Mito disease is still my best guess at this point.

The other alternative would be toxic exposure to some type of chemical. God knows I've crawled through enough junk while disposing of ordnance in the Aleutians. Sadly, if my problem was caused by mercury exposure, there is no test to show it unless I was being exposed at the present time. Mercury poisoning can cause problems 20 years later!
Feb 25, 2004:   (1:46 pm) I had an appointment with the VA on Monday to verify my level of disability to determine home adaption services which would be appropriate. I had a very minor neuro exam with just my legs and had to walk to failure. The walk wasn't very far, just down one hallway until I locked up. My thighs were burning BAD after that, all the way through yesterday. It felt like someone had wrapped them in very warm coals. Today my calf muscles are really bad and I can still barely walk. Not quite to baby stepping, but close. Also, one of the Xanthelasma palpebrals around my right eye is gone! The remaining 3 seem to be diminishing too!! I'll thank God for that!!!
Feb 16, 2004:   (9:46 pm) After the 7th day of my first physical therapy appointment I'm of the opinion that either this is going to be an extremely long road to recovery, or that my muscles simply can't tolerate any level of physical activity. My walking has gotten progressively worse over the past 7 days. Right now I'm almost to baby stepping again. My arms, neck, and wrists are STILL almost unbearably sore. My fatigue level has been over the top since then too. In my present state I'm unable to repeat the stretches I did last Tuesday. I usually recover from neuro exams faster than this.
Feb 14, 2004:   (1:19 pm) Well here it is the 4th day after my physical therapy and I'm STILL sore from head to toe! Walking has been real slow. A few times I've been stopped in my tracks again by sharp pains in my thighs. My left arm almost locked up last night and even my neck and wrists are still sore from that therapy session. There will be no stretching done today. The vibration in my upper thighs is still there but it has lessened to a great degree. My feet too.
Feb 10, 2004:   (11:30 pm) I had my physical therapy appointment today. The doc showed me some good stretching exercises that are supposed to help me maintain flexibility and range of motion. Truth be told, right now I'm VERY SORE from the neck down! During some of the stretches it took less than 10 seconds for the muscles to start burning. My thighs feel like they're on fire plus they are vibrating again. This is the first time my wrists have been sore (throughout this whole ordeal). I don't think my body is going to enjoy this much. I'll need to see how long it takes to recover from today before I can determine a schedule.
Feb 5, 2004:   (2:13 pm) Only one more day of antibiotics (I hate taking pills)! My stomach is already feeling more "normal". Before this I was constantly feeling bloated regardless of what or how much I ate. I would feel a dull aching in my stomach that felt better after I did eat something. I haven't had any heartburn or anything since going off the aciphex for this treatment either. Meanwhile my muscles haven't changed. Minor activity still evokes partial paralysis, burning pain, and restricted mobility. My hands still feel really swollen all the time. The past few days I've had really bad fatigue and severe headaches. I'm doing a lot better today.
Jan 31, 2004:   (9:00 pm) Wanna hear something bizarre? My brother called a little while ago from California. He's taking the exact same medication I'm taking for H. pylori! He's got it too. I wonder how many others do and just don't know it? According to what I've read, roughly 40% of the population of the USA has it and doesn't know it.
Jan 23, 2004:   (2:55 pm) The H. pylori test appears to have come back positive so I'm going on some super antibiotic treatment that's supposed to totally eliminate it. I really hope this solves the stomach problems I've had for a while now. I'll be going off the aciphex during the treatment.
Jan 18, 2004:   (1:53 pm) Since starting the Elavil I've only had two minor itching attacks, and they didn't last long. I've been sleeping a lot better too. Yesterday I had pain and cold spots on both knees, just above the knees, and on my stomach. My fatigue level was pretty high too. I can't think of anything I may have done to cause that. It just came out of nowhere.
Jan 13, 2004:   (12:48 pm) I saw my GP today and she agreed to restarting the Elavil. COQ10 reduction isn't that big an issue since I'm taking the COQ10 supplement. I also had a blood test done today for H. pylori, the g.i. bacteria which could be causing all the stomach/acid reflux problems I've been having.
Jan 10, 2004:   (5:04 pm) I just woke up after finally getting back to sleep around 5:30 this morning. Around midnight last night I woken up with my left arm itching again; real bad! I'm talking chop your arm off bad. I'm going to talk to my doc about starting the Elavil again; or at least something else for the itching, since I've noted itching under two cirsumstances in my diary. Both times the itching started when I was coming off Elavil, or after I had stopped it. Elavil is one of the drugs prescribed to control dysthetic itching, common in patients with nerve related diseases, like MS. I believe my itching is related to Restless Leg Syndrome, which I have. There is never any rash with it and I still haven't been able to find any trigger that causes it.
Jan 01, 2004:   (12:03 pm) I woke up again today with my left arm REALLY itching like mad. So far it's lasted about 4 hours but is now starting to subside. I took two benadryl allergy caps about 3.5 hours ago. It was so bad I felt like sawing my arm off! I'm going to try some of the other benadryl anti-itch products to see if they help. Hopefully I'll be able to go back to sleep soon. Anything that interupts my sleep now has an adverse affect on my muscle strength and endurance. Right now I'm feeling pretty fatigued and physically wiped out.
Dec 30, 2003:   (1:24 pm) The itching continues to come and go without rhyme or reason. I'm using benedryl to help control it. I talked to my doc's office yesterday and she agreed to that.

Also, I'm being tested for H.Pylori as soon as I can get to the hospital for a blood test. After doing some research I've discovered that my doc is right on with this. It seems up to 40% of our population may have this and not know it. It is the cause for ulcers and various degrees of gi disorders; some of which fit right in with my symptoms. The good news is that it is curable with antibiotics and if it is this, it should reduce or eliminate my having to take Aciphex. I'm all for anything which reduces the number of pills I have to swallow every day.
Dec 26, 2003:   (6:41 am) After spending yesterday in various states of fatigue with my left upper thigh and left rear in pain, I'm now awake with my left forearm itching like mad! No special reason I can think of that it would happen now. It's maddening though. It's starting to calm down after taking benedryl and putting some anti-itch cream on it. My head and the back of my neck are itchy to a lesser degree, but at least it's bearable.
Dec 19, 2003:   (12:34 pm) The last few days have been really rough. Night before last I was up all night; partly due to itching and partly due to just not being able to sleep. I definitely need another sleep med. Yesterday my legs and rear were practically in lock up mode. I'm not walking real well today either. I just can't do well at all with limited sleep. Last night I had a bad itch attack only on my left arm and I hadn't taken ANY meds of anything yet. I don't think it's med related.
Dec 17, 2003:   (09:45 pm) Last night I didn't take any of the supplements I've been on and guess what? No major itching. So right now I'm taking my NADH to see if that's what is causing it. Taking the Wellbutrin by itself in the a.m. didn't do anything.
Dec 16, 2003:   (03:49 pm) Another miserable night last night. This time the itching was on both legs, my back, my feet, my head, and to a lesser degree both arms. It's definitely not tied to taking any particular med at any particular time that I can figure so far. Today I took the Wellbutrin early by itself. I'm going to try some benedryl later on if it kicks up again, to see if I gain any benefit from it.
Dec 13, 2003:   (05:09 am) Tonight I took my aciphex with dinner and the zetia about 2 hours later. About 2 hours after that I took the clonazepam and wellbutrin. You can see by the time I wrote this that it's been a bad night. My left arm is itching like mad!! I did discover that wellbutrin can cause itching, so later today I'm going to take that first, by itself and wait a few hours to see what happens. This is horrible. I'm having a lot of pain and soreness in the left bicep too. :(
Dec 12, 2003:   (12:51 pm) After spacing out all my meds yesterday and last night to try and find out if one were causing the itching, I think it was all for naught. I started itching a little tiny bit after taking the Aciphex, but nothing compared to the other night. So maybe it's just part of the RLS junk. When researching the itching (pruritus) associated with RLS, it did specifically mention the legs, arms, and scalp. I haven't had itching on my legs yet but the other night it was really bad on my head and arms, and a little on my trunk.
Dec 11, 2003:   (11:53 am) The itching is all gone now. I'm going to try something and take my Zetia at supper time by itself to see if the itching returns. I'll have more info on if I think it is the Zetia causing it when I call my doc that way. If not, then I'll need to ask for something else to control it.
Dec 11, 2003:   (12:04 am) I am so miserable right now. My head and both arms, particularly my right arm, are itching bad. So bad that I've drawn blood in several spots on my right arm. I've taken some benedryl to hopefully alleviate it. I found out something interesting when researching my drugs for "itching" reactions. Zetia and Wellbutrin are the only ones I'm currently taking which has itching as an allergic reaction. Of note however, is that there is no rash like you would normally find in an allergic reaction.

I also found where Fibromyalgia patients, also diagnosed with Restless Leg Syndrome (I have RLS) can experience a range of symptoms, which includes itching on the legs, arms, and scalp. I think the catch 22 here is that Elavil, which is used to treat dysesthetic itching in MS patients, is one of the drugs I stopped on the 22nd of November because it had a capacity for reducing COQ10 production in the body. The rash is back under my armpits again, more severe on the right. Needless to say I won't be getting to sleep any time soon, so tomorrow will start out with an abnormally high energy deficit.
Dec 6, 2003:   (10:49 am) Last night the itching I had experienced the last time I stopped Elavil started back up again. Makes me wonder. ???? Both my arms were itching real bad. It's not so bad this morning. Also, I found an old Word doc I made two years ago when I thought I might have Complex I mito deficiency. I think that's what my doc at the MD clinic thinks too, because of the supplements he has me trying now, which include NADH and COQ10. A ketogenic diet (high fat, low carb and protein) also is beneficial in some with Complex I.
Dec 5, 2003:   (10:17 pm) Since stopping the Elavil at night my sleep is all messed up again. It seems like the past few weeks my stomach has been upset too. I hope it's just some bug and not part of what's going on with me. It could be serious if it is. Also, the rash came back under my arms again! I give up on trying to figure that one out. It stuck around for a few days and disappeared again. Still no change with my mucles. Just from taking a shower today (lifting my legs to get in the tub/shower) both thighs were burning and weak. My hands are feeling really swollen lately too. I wonder if the cold weather has anything to do with any of this?
Nov 27, 2003:   (5:06 pm) So far I haven't seen anything in the way of improvement from this nutrient trial. Yesterday was the two year anniversary of losing the normal use of my legs. Today my left arm and both thighs are very sore and I've had a lot of indigestion the past few days, especially today. The fatigue hit me so bad today I was accused of being unhappy. The good news is that God continues to bless me with every new day and there are many, many others in far worse shape than I am. Those are the ones I pray for. Life itself really is a blessing and I truly feel sorry for those who can't be thankful for that alone.
Nov 23, 2003:   (2:30 pm) Yesterday was a rather odd day. I went from feeling kinda ok when I woke up to having throbbing pain in my left upper arm/shoulder, stabbing pains at the site of my 1st leg biopsy, and stabbing pains in my right thigh. All this for no apparent reason. The fatigue became really bad. The upper arm/shoulder pain was unusual because I have never had that pain combination before. Walking was really slow and limited because of the leg pains.
Nov 19, 2003:   (1:28 pm) My GP agreed to stopping the Zocor and tapering off the Amitriptyline over the next week or so. Both of these drugs have been shown to deplete Coenzyme Q-10 within the body by inhibiting its production. It affects the body at the mitochondrial level. Depleted or low levels of COQ10 can cause the exact symptoms I've been having. The damage at this point could be irreversible so we're cutting off/tapering those drugs to give the nutrient trial the best shot over the next 30 days to see what happens. I'll take 50mg of Amitriptyline the next 3 days, then 25 mg for 3 days, then 25mg every other day for 3 days. I'm also starting on Vitamin E based on studies showing that Vitamin E and COQ10 together, work better than each alone. The bottom line here is that if you are taking a statin drug for cholesterol, you need to take both Vitamin E and 60 to 90mg of COQ10 a day. Don't take my word for it, do your own research and see which conclusions you come to. Talk to your own doctor before making any changes.
Nov 17, 2003:   (6:27 pm) Based on my visit today with the Muscular Dystrophy Clinic, my diagnosis is still "pending", though we're teetering on mitochondria disease or involvement of some sort. I'm starting physical therapy; doing some stretching to try and maintain range of movement as much as possible. I'm also starting on NADH, Creatine, and COQ10. Follow up will be in roughly a month to review status. The doc did a minor neuro exam and he had me walk around until my legs were good and sore (which didn't take long) before taking blood to check my CK level. Needless to say my legs feel like they're on fire and severely bruised right now. Both are also tingling from the thighs down to my feet.
Nov 16, 2003:   (5:28 pm) The past two days the back of my neck has been very stiff and sore. This is a first because only the left side of my neck had been affected previously.
Nov 13, 2003:   (7:38 pm) On Monday the 10th I engaged the services of a lawyer that specializes in Social Security claims. Meanwhile, for the past two days I've had excrutiating pain on the left side of my lower back and last night at dinner I was having stabbing pains in my right thigh. I'm going to wait for more evidence that Zocor could be the villian before calling my doc about it. I'm seeing the MD clinic on Monday anyways and we'll discuss it there.
Nov 6, 2003:   (9:38 pm) A few days ago I decided to test the water again with regard to my muscle strength, so as soon as I got up I did 10 deep knee bends. Big mistake. Within 2 hours my legs were burning so bad I could hardly do anything but lay there in pain. Since then I've had increased bouts of pain in different parts of my legs; numbness off and on; buzzing or tingling off and on; and just overall weakness. So what did I learn? Nothing has changed. My muscles still act like rechargeable batteries that have gone bad.
Oct 31, 2003:   (6:57 pm) My GP has me starting back on Zocor today. My numbers were C239/H38/L158 from my fasting bloodwork earlier in the week. I'll be especially watchful of any increasing muscle pain or weakness considering my history with this drug.
Oct 28, 2003:   (10:49 pm) My second entry for today. It appears I've developed Xanthelasma palpebrals on my eyelids. Four total, in a symetrical pattern around my eyelids. They are pretty small and you can't really even see them with my glasses on. Roughly 50% of people who get these benign deposits have elevated cholesterol levels. They are not harmful in themselves and usually the only concern is cosmetic.

What I find odd here, is that they can also be caused by metabolic disorders involving lipids or fats. Even odder, during my diving physical back in March of 2000 I was found to have slightly elevated cholesterol and was put on Zocor. Within 2 weeks I started developing the pain in my arms which has since enveloped practically my whole body. So we stopped the Zocor about 3 months into it to see if the pain would go away, and of course it did not. These palpebrals I see around my eyes now showed up at roughly a week or so after I was put on Zetia at the end of August 2003. Zetia is another cholesteral lowering drug which supposedly inhibits the body's ability to absorb bad cholesterol. So in reality this could be a good sign of what's going on with my muscles too, since I did have an MRI that showed fatty replacement of the muscles in my thighs. This could be the needed part of the puzzle.
Oct 28, 2003:   (6:16 pm) I received my appeal back from Social Security today. They denied me again, stating that information they reviewed said I had normal strength and could walk NORMALLY!!!!! I don't know whose records they were reviewing, but they weren't mine. They also said that I could continue working as a COMPUTER PROGRAMMER (a job I never had or have ever been qualified to perform). Tomorrow I'll contact the DAV in Boise and see what they recommend next.
Oct 9, 2003:   (10:11 pm) Nothing new to report muscle wise but my fatigue has been REALLY bad lately. I know I was up for a while today but I honestly can't remember what I did other than going back to bed and waking up earlier this evening.
Sep 27, 2003:   (3:00 pm) My legs have been really bad since the stair episode. It's wierd how the effect changes. In the morning my calves wanted to cramp up, thus restricting my movement; and then last night it was both hips and my hamstrings. This thing just does what it wants with no real rhyme or reason. Last night I could barely walk at all. I slept for 12 hours last night too. I told the neighbors the next time they need computer work they can bring it over here! Right now it's my calves, left hip, and rear that's restricting my movement. The feeling goes from extremely sore, to stop-in-your-tracks pain if I try to move beyond whatever limit my muscles have decided on at the time.
Sep 25, 2003:   (4:55 pm) After standing around in the back yard supervising my son doing yard work, my left hip will no longer support me. I'm fried for today! So I'm using my walker to get around which will just end up burning out my arms and shoulders. I haven't had hip involvement this serious in months. Doing the stairs a few days ago probably didn't help. My fatigue level has been really high since then too.
Sep 25, 2003:   (2:20 pm) Day before yesterday I went and fixed a neighbor's PC. Distance to get to their house was roughly 100 feet and I did use my cane for extra support. I had to go up stairs to the 2nd floor to do it (one step at a time). Coming home I had to have my wheelchair brought over to get me as my legs froze up after about 20 feet of the walk home. Also as a result of that exertion I've had more cold spots on my legs, and different groups of muscles twitching and buzzing, mostly in my legs. The muscles in my rear and hips were very sore as well. My calf muscles are now as equally involved as my thighs and can be the source of immobility like my thighs used to be by themselves. I'm also still getting sharp shooting pains at the sight of my first leg biopsy every now and then. That alone can stop me in my tracks, and frequently does. I've sent my appeal in to Social Security. My appointment with the MD clinic is set for 17 November.
Sep 23, 2003:   (2:20 pm) Social Security denied my first claim for disability. So I immediately filed an appeal and included letters from my doctor and also the VA examination reports from May, which they based my 100% rating on. I don't really blame Social Security. My case has been really strange from the start and the progression has been reported at different times with different symptoms and areas being affected at different levels. My progression fits nothing I can find on the web. I may as well be a beach ball rolling into the doc's office. My HMO finally got us all listed correctly as being Prime customers, so now I have to have my PCM resend the referal to the MD clinic.
Sep 20, 2003:   (11:58 pm) Three days ago I was woken up after only 4 hours sleep by construction workers framing a new house about 100' from my bedroom window. I spent the rest of the day in a virtual zombie-like state and by 9 pm I could barely move my right leg at all. My muscles, especially my legs, are still not back to working at their normal lessened ability.
Sep 17, 2003:   (7:57 pm) No changes with the exception that I'll be on Zetia from now on. Zetia is supposed to inhibit the bodies ability to absorb cholesterol. My bad cholesterol was 170 from the labs I had done here. I didn't notice any side effects during the trial period so they made the prescription official today. Still no word on the MD clinic referral. I'll call my HMO tomorrow and see what's up.
Sep 09, 2003:   (4:05 pm) I just received my VA disability rating in the mail. 100%, just as I figured it should be. I faxed a copy of the VA rating letter to the local Disability Determinations Office. They are the ones who make the recommendations to Social Security regarding disability eligibility.
Sep 04, 2003:   (5:20 pm) WOOOHOOOO!!! I'm getting a referal to the local Muscular Dystrophy clinic in Boise. They should be able to get me in some time in October. My HMO also found a Toxicologist in Salt Lake City; but I'm going with the MD clinic first. If I end up a mystery at the MD clinic I'll pursue the toxicologist referal.
August 30, 2003:   (5:17 pm) The fatigue has been really bad the past few weeks. I just don't have the mental or physical energy to do much of anything. Not only have my legs been burning out quicker with that same lactic acid type of burning, but my left bicep and shoulder have been very sore lately. My hands continue to feel swollen on a daily basis.
August 26, 2003:   (8:29 pm) My muscles appear to be getting worse again. Yesterday I had the sharp pain in my biceps again that I hadn't felt since 4 months after this started. The soreness overall is increasing. I'm having trouble sleeping on my right side because the latisamus muscles on that side don't like to be laid on. Just out of nowhere they'll start twitching. When it happens my whole body jerks. I try to switch to my left side and the shoulder and tricep muscles on that side vary in pain level from very sore to painful. At times I end up just laying flat on my back (which my legs don't like) until my pills knock me out. Oh, my doc agreed that seeing a toxicologist probably wouldn't be a bad idea, so we're looking for one now.
August 18, 2003:   (8:39 pm) Another miserable day today. Local contractors broke the irrigation water line which feeds our sprinkler system, and us having new grass coming up in the back yard was extremely bad timing. So twice for about 20 minutes a time I watered the back with a hose and spray nozzle. Within the hour both thighs were burning; and my shoulders, forearms, and hands were extremely sore. I couldn't even make a fist with either hand. The fatigue hit me hard about the same time and put me in bed for about 4 hours. I couldn't sleep. I just lay there in pain. I called my doc's office today to discuss having her do a referal to a different type of specialist other than a neurologist (I've already been to 4 different neurology departments). I'm thinking maybe a toxicologist or a circulatory disease specialist. I'll discuss it with her when she calls me back. Oh, and miracle of miracles, I got my birth certificate from the U.S. Consulate office today, which I'll need for Social Security!!!
August 14, 2003:   (9:57 pm) The past two days have been really bad for fatigue. On a scale of 1 to 10 they would definitely be a 10. My legs are still really sore from last Friday's neuro exam, though my greatest walking restriction is now coming from my calves instead of my thighs. I've also had some pretty bad soreness in my hips, which hasn't happened in a while. I did call Social Security today. They said my case is still pending. I should hear something any time from the VA with my disability rating.
August 12, 2003:   (9:50 pm) I got together with the guy at Norco to start the process for getting the power wheelchair. Of mention here is the fact that I'm not getting the armpit rashes any more. I wonder if the high humidity in Florida had anything to do with that? When I was there I would break out practically every time I sweat; which would happen just from going outside. Here the weather is nice and dry! There, that's my plug for Idaho Tourism! :)
August 8, 2003:   (9:05 pm) I had my first appointment with my new PCM (Primary Care Manager) today. We basically just went over the history. She did a minor neuro exam which has both my thighs burning right now. Both arms and shoulders are pretty painful too. She is referring me to another neurologist and wrote an order for an electric wheelchair. I passed the info on to the VA. I'm still waiting for a disability rating decision. Haven't heard much from Social Security. Guess it's time to give them a ring again.

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