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!!!