Left sided weakness, twitching, cramping

[hbgmom]

In early Feb. my left arm started having twitches under the skin and feeling somewhat sore and then weak. My left calf also became noticeably weaker a few weeks later. The weakness in both my left arm and leg are now through the entire limb and it is significant at this point (I can't hold my 5-year old child). I have cramping in all my hands and feet (used to be just left side) and this weekend my right arm started having twitches as well - constant little firing under the skin for 2 hours and then randomly in that limb. I have had an MRI, found a pituitary tumor - in Feb, & saw a JHU endo in March told me he agreed definite left sided weakness, advised me to see neuro. Saw neuro, he didn't do resistance testing (which is where weakness is very noticeable) but did do EMG on left arm and leg and said normal so no ALS. EMG done in Mar when weakness not as severe. Now when lying down I feel pressure in my lungs and difficult sleeping laying down. My left arm is smaller than my right and I now am constantly trying to swallow the mucus in my throat. Over the past 2 weeks started feeling a hump? at the top of my back making my head lean forward w/bad posture. Last summer I did a mini triathlon - in Dec was running 3 miles 3xweek, exercisng 6 days a wk - now I am winded up 1 flight of stairs and my leg can barely make it for a 30 minute walk. I am 33, female and was in great health until Feb. Quest: Does an EMG early in symptoms definitly rule out ALS? What else could cause such marked weakness and my muscles disappearing over 3mo? What else should I be tested for? Any advice?

[CCF-Neuro-M.D.-PW]

I cannot give you a clinical diagnosis over the internet as this site is purely educational.

An EMG will be able to show evidence of a lower motor neuron problem, which includes ALS. If there is an upper motor neuron problem like in the spinal cord or brain, it will not show this generally. ALS is more common in males over the age of 40 years, so you are not quite in the range for this. Twitches or fasciculations can also be caused by pinched nerves, and pinched nerves in teh neck could cause twtices, weakness and wasting in the limbs. An MRI of the neck could help investigate this. If the brain MRI is truly normal the spinal cord shoudl be looked at closely to look for evidence of inflammation or growths, beyond that they may have to look at the spinal fluid carefully. The most common cause of these kind of symptoms in your age group and gender would be MS so this shoudl be looked at carefully.

If you can, perhaps a second opinion at a larger center with a neuromuscular or MS neurologist could help make a diagnosis - the correct diagnosis is very important before deciding on prognosis or treatment.

Good luck

[Helen1967]

Hi everyone, I'm sorry to post my problem here, I'm trying for a month to post my question but didn't get a chance.
Hi everyone, I’m 39 years old female from Netherlands, it’s about two years I’ve having weakness in my muscles and it’s getting worse. It started about two years ago with a very high heart bit (180 bits in a min.) I went to the hospital and my heart was in a good condition so it seems nothing was wrong with my heart, the next day I got a little weakness in my lower legs, I didn’t take it seriously, until a year ago it started to get worse, the weakness in my legs was getting more and after few weeks I had the muscle weakness in whole my body, but only the muscles. In that time I had different kinds of blood test, MRI, EMG. Everything was negative except a Syrinx on my spinal cord (c1 to c5 or something). My neurologist said it is too small and can not be the reason for all my symptoms. The weakness is getting less with well sleeping, good breakfast, movement (not heavy sport or exercises) but it gets worse by not sleeping enough, resting too often and not moving. When I’m moving I have to rest and lie down for half an hour. The weakness is not only in my muscles but also my JOINTS, when I walk I can feel the weakness of my joints by the pain I feel when I’m walking, special on my right side of my body. When it’s cold I’ve more pain in my joints special my fingers and toes, sometimes two of my fingers get completely white and numb, like there is no blood in those fingers. When I’m walking in a warm weather, I get swollen hands and feet. I’ve also breathing problems special if I don’t move or I’m lying down on the coach. The muscle weakness is in toes, legs, belly muscles, arms, hands, fingers, shoulder, neck and jaw. I feel the jaw weakness when I push my teeth on each other, talking, eating. I guess it’s also the muscles of my lungs because of the breathing problem. The weakness is one day better than the other day but it’s not going away, so one day I feel great and the other day for any reason is coming back. I’ve also TWITCHINGS in all over my body. I’ve had cramps special in my left leg and most of the time when I’m sleeping. My fingers and hands have cramp when I’m opening the door with the key or opening a can. My tongue is stiff and strange, sometimes difficult to talk but I never had problem with talking.  The back of my neck has a kind of strange feeling special with stress; it’s just beginning of my neck after the head.
I’ve no sleeping problems, no swallowing problem, no visibility problems and no sensation problems.
My symptoms are very much like ALS or MG but my Neurologist doesn’t think so. He says that ALS doesn’t take this long and would have serious damage by now. And it’s not MG because I feel better by movement. Weakness on left side is more than right.

Please, I don’t know what to do anymore, I’ve been to two neurologists and no diagnose yet.
Can an expert or a neurologist read my post? What else can I do? And does someone know a good neurologist in Los Angeles area? For example UCLA.  I’m going there for vacation and I want to take my tests and results for second opinion.

[johnflox]

What medicines, have you taken up to one year prior to the onset of your symptoms? Have you been on statins (cholesterol lowering drugs)? Did you take antibiotics like cipro or levaquin? Have you taken antimalarial drugs? All your symtoms fit with a delayed reaction to those medicines, but the unchanged sleeping patterns, because the toxicity of those medicines also affects sleep deeply .

[Helen1967]

Dear Johnflex, thank you for the comment. If this is a medicine reaction what can I do about it? any special test?
Thank you again.Helen

[motheroftwo]

Hi

A EMG test can show normal results in early ALS, usually 2-3 EMG tests are performed. My 1st emg was normal, a year later I received a abnormal emg.

Have you got brisk reflexes? as this is a common symptom of ALS, If you are worried as I'm sure you are book up to see an ALS specialist.

Good Luck

[motheroftwo]

Hi Helen, unfortunately the Dr will not reply to your question here, you have to post your question on its own.

[johnflox]

If it is a reaction to a drug, you have to know it to avoid any re-exposure, because in that case the lesions can become irreversible.
You can also learn how to avoid aggravating factors and in some cases you can take some active measures to speed healing.