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Old 06-02-2007, 06:21 AM   #1
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Question Unknown illness ... advice/ideas appreciated!

Well, now that my bipolar is under control, I'm feeling the need to focus again on the strange neurological/neuromuscular condition that has been giving me grief for the last year now (especially as my psychiatrist definitely thinks something is wrong aside from the bipolar).

My most prevalent symptom now is numbness and fatigue and balance. This mostly affects my left leg, but also affects muscles in my right leg, torso and my left and right arms. I will have odd feeling (hard to describe, but feels like numbness) in these muscles when I try to use them, and they tire extremely quickly. I used to be extremely strong in my legs - I have gone from being able to leg press 160kg on a 45 degree press 18 months ago to walking with an odd gait now and (at times) using a walking stick.

I also get twitches in the affected muscles, but mostly in my legs, calves and feet where the degree of weakness is most noticeable. These twitches can be strong enough to jerk a limb, and can be strange too (I was looking at my left foot before, and it looked like a party was going on, with all these little twitches going on under the skin fuuuuuuuuhreaky!) ... I used to think the twitches were parasthesias, so I was checked out for MS (I do get parasthesias too - I can now feel the difference - but they only occur when I trap or bump a nerve and I also have poor circulation in my hands and feet at times). No demyelination present in brain or spine. EEG normal. I have had nerve conductivity studies, which were all good, which also ruled out demyelination. So no MS.

I also think my muscles have atrophied - as does a rheumatologist I saw to talk about Fibromyalgia. It was he who said to go back to a second neuro after they ruled out MS. I did, and he did an EMG (six months ago) which ruled out de-enervation of my muscles. No Babinksy's sign either. Have been tested for Myasthenia Gravis, came back negative. This all mostly rules out Motor Neurone Diseases:

- Amyotrophic Lateral Sclerosis can be ruled out because a) I'm a 25 year old female b) normal EMG c) rarity of this disease. Chances of this one? 1 billion to one.
- Primary Lateral Sclerosis can be ruled out as I have fasciculations - and it is seriously incredibly rare - even more so than ALS, about 100 times rarer in fact!
- Progressive and Spinal Muscle Atrophies because my EMG was normal as were nerve conductivity tests.
- Progressive Supranuclear Palsy because the symptoms really don't match and it generally affects much older people
- Muscular Dystrophies because they mostly occur in boys
- Charcot-Marie-Tooth disease (my Pyschiatrist brought this one up because of my itty bitty (and somewhat wasted) little calves because of no signs of demyelination & normal EMG results. This one is the most likely of the lot in my opinion though ...
- Spinal Cyst or Tumor ... I have some discomfort in my lower lumbar region, however spinal cysts and tumours are rare enough as it is, let along slow growing ones (more likely to find an honest politician than one of these hehe)
- All Leukodystrophies as surely demyelination from these would show up in an MRI.

Naturally, with thanks to my bipolar diagnosis, it is likely that the neuros will chuck this in the too hard basket and/or the basket case basket. Even I thought, for many months, that my bipolar was to blame but unfortunately, it isn't. Still, I am having to undertake my own research because I'm too young to be a candidate for most neuro conditions and my first neuro dismissed me (and the second one will probably too). So any suggestions, advice, directions to head in would be much appreciated. I think the medical libraries of the local unis are going to be my next bet!

The neuro has ordered a lumbar and sacral MRI - which I'm yet to go for (lazy and poor and been focussed on the bipolar) - let's see how that goes.

Still, any ideas would be appreciated!!!

 
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Old 06-05-2007, 11:41 AM   #2
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Re: Unknown illness ... advice/ideas appreciated!

have you been tested for guardian barre syndrom? ask your doctor

 
Old 06-05-2007, 07:46 PM   #3
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Re: Unknown illness ... advice/ideas appreciated!

last reply i misspelled the syndrom it is "gullain barre syndrom"

 
Old 06-06-2007, 07:11 PM   #4
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Re: Unknown illness ... advice/ideas appreciated!

ok i feel like a real idiot, i,m having a hard time figuring out the boards. i'm not computer savy and this is the first time i'v ever been on anything but e-mail or ******. never been on any kind of chat line. any help and directions would be greatly appreciated. example when i see that there are replies how do i read them. i really need to know from the very basic steps. or should i say baby steps please help and don't think i'm stupid.

 
Old 06-07-2007, 12:31 AM   #5
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Re: Unknown illness ... advice/ideas appreciated!

I would assume you've checked this out thoroughly but I still have to mention medication reaction. Lithium can certainly produce some wierd neurologic symptoms as can other drugs sometimes used in bipolar disorders. Good hunting..

 
Old 06-07-2007, 09:54 PM   #6
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Smile Re: Unknown illness ... advice/ideas appreciated!

I don't have advice or or ideas for you , but I definitely can understand what you are going through. Last year, I had terrible numbness and pain along with symptoms of malaise/fatigue. I had always been very active. I am a wound nurse, and that takes a lot of flexabilityand agility as well as being strong enough to lift people. I didn't have ins. so the doc did one inexpensive test and said "I think you have fibromyalgia, and you should apply for disability." After two months in bed, and filing for dis., I felt better. pain was much less, and although I got tired quickly, I did okay, decided the doc was a qwack, moved over 600 miles and started a new job, that was eight months ago. Two months ago it all started again, only it's worse. The pain is all over ,I am kitten weak, I can fall asleep standing straight up at times. I have lost all strength in my left leg and now have to have a wheel chair to keep from falling over with weird "dizzy spells" and my knees from buckling if I am going more than a few hundred feet or so. I have trouble getting up from a sitting/laying position, numbess in my face the right side of my back. My hands and legs I could swear are on fire at times. There are days that I spend alternating between pacing( well dragging my left leg around behind me) sitting, and laying because honestly there is no place I am comfortable for more than a few mins.I have had an MRI of my entire body, an "inconclusive" EMG, an EEG, a spinal tap, and am currently being scheduled for a muscle biopsy. I had been hospitalized twice in the last few weeks because I have an elevated WBC count, but they can find no infection,I run a high fever every night, and my CRP and Aldolase levels are off the chart. Still no one has a diagnosis. I am on heaps of pain meds that just dull the pain. I have two great doctors(my neuro and my primary) that are determined to find something, but all the others say it's a physchological issue or they blame it on my weight. (I have fought my weight since I was I kid, it's nothing new)The latest doctor was the plastic surgeon who is supposed to do the muscle biopsy. My mom flew in for it, and here we were sitting in his office for a hour and 45 min listening to him in the next room talking to some chick about her boob job(yes we could hear everything) and he finally comes in and nonchalantly says" let me guess, you have this that and the other and you think i can take a piece of muscle and you will have your silver bullit, It ain't gonna happen" I was not impressed. so now it's back to the waiting game. If I could offer any advice, it would be to find out if they checked your CK, aldolase, and c-reactive protein(CRP) and what they were. Then know that no matter what any one says about your bipolar issue, those test mean something is wrong, and it IS NOT ALL IN YOUR HEAD. take care. Jodi

 
Old 06-11-2007, 06:10 AM   #7
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Re: Unknown illness ... advice/ideas appreciated!

Quote:
Originally Posted by johnlovesjesus View Post
ok i feel like a real idiot, i,m having a hard time figuring out the boards. i'm not computer savy and this is the first time i'v ever been on anything but e-mail or ******. never been on any kind of chat line. any help and directions would be greatly appreciated. example when i see that there are replies how do i read them. i really need to know from the very basic steps. or should i say baby steps please help and don't think i'm stupid.
Hi Johnlovesjesus, we were all beginners once! The easiest way to reply is to press the "Quote Reply" button. To see replies to a thread, click on the name of the thread, in this case "unknown illness ... advice/ideas appreciated" will take you to the replies. I know it is all confusing, but the best thing to do is just jum in and use the forums and it will get easier.

I have been checked for Guillian-Barre, I believe, I would have shown slowed nerve response on the NCV tests, and possibly de-myelination on my MRI.

John449, I don't take Lithium for my bipolar, I talk Valpro - and had the symptoms before the medications showed up, though I do know the fun of psychotrophic meds and their symptoms (annoying!)

Jodi - thanks heaps for your support, I can imagine what you are going through - that plastic surgeon was so rude! Just because you're not paying ten thousand bucks for big boobs! Rude so-and-so!

Thanks again everyone!

 
Old 06-11-2007, 06:54 AM   #8
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Re: Unknown illness ... advice/ideas appreciated!

jodi- my prayers are with you- been there, still doing it, no one can seem to find the exact cause of my problems either. some doctors think i'm crazy. i know my pain is real. no one can tell me other wise. will keep praying for you. let me know if you find something out.

 
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