hello, have recently looked into some of the symptoms i am displaying and seem to match up with a number of als related issues. try to be brief: a little over a year ago my left foot started to 'drag' causing falls..... i let this slide, didnt think to much about it. 'just getting old' (i am 54). began to lose feeling in left foot then right foot as well. never had any pain, tingling, numbness - just sort of a dead, or feeling like blocks of wood from the ankle down. began having issues standing and with balance, and gait became erratic. dizziness on standing and if going from a lit room to a dark room.... began to see a local neurologist, he started prednisone and pt. which seemed to help for a week or 2. then became dramatically worse, started in fingers as well. he stopped the treatment, had an emg done which showed issues that he could not define and a spinal tap that showed positive ana results. he gave up and sent me to chicago where he felt a specialist would be of better help. they ran emg and conduction test, they stopped after testing left leg/foot because damage was so severe 'it didnt make sense to continue'. another test again showed positive ana. they then did a biopsy of nerve and muscle - this showed dead axons in nerve and atrophied muscles in leg. now the hands are starting to curl in, no strength and moving up into wrists, same 'dead' sensation. if i stand for any amount of time or try and do simple tasks become winded and need to sit. today dr commented that muscles in web area between thumb/index finger and wrist is now visibly diminished. the only pain i had was occasional feeling like a shock in upper legs/thighs, this only went on for a few days and stopped. never had any burning or other sensations in any extremity. other issues that do not seem to be related are a cyst on pancreas and liver problems (not a drinker). standing up is now difficult, i use cane to walk. feel helpless and scared, dr is pushing for IVIG treatment to start as soon as insurance will approve. I apologize for length of message - once got started it felt good to unload! any thoughts? suggestions? websites with better info than i can find on my own? thanks for reading!
unsure / frightened of symptoms and current diagnosis
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Jpak3, you may want to come over to the "Do I Have ALS, Is This ALS" sub forum until you have a clear diagnosis. There are stickies there that may be interesting reading and many posters who can help you out.. But since you are here on this subforum I can only suggest you find a neurologist who specializes in ALS. I don't understand why a doctor couldn't define issues with your EMG. You certainly need answers, you have a lot of suspicious things going on. Maybe someone on this forum can direct you to a specialist in your area. Good luck to you!
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What differentials are being considered at this point? IVIg sounds like CIDP/MADSAM are in the mix. Where did you go in Chicago?
To get insurance approval for IVIg, your neuro has to specify that there is a non-zero probability of something that is not ALS, which IVIg doesn't help, so may be early days to come here. But the important point is that you know what s/he thinks it might be, and why. You need to have a straightforward conversation w/ someone on the team. You're the patient and you're in charge of your care. Once you understand the possibilities, you can check out the right Web sites and understand the scenarios from there.
To get insurance approval for IVIg, your neuro has to specify that there is a non-zero probability of something that is not ALS, which IVIg doesn't help, so may be early days to come here. But the important point is that you know what s/he thinks it might be, and why. You need to have a straightforward conversation w/ someone on the team. You're the patient and you're in charge of your care. Once you understand the possibilities, you can check out the right Web sites and understand the scenarios from there.
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As Laurie says it sounds like they are considering other things if they are wanting to try IVIG. And Nancy is right that you need a neuromuscular specialist I do not understand why things have not been better explained to you At this point even if the diagnosis is not clear the differential should have been explained as well as the plan. You need to sit down with the doctor and find out what exactly your tests have shown what has been ruled out, what is still on the table and other than IVIG what are their plans. If you know the answers already we could probably answer you better. For example severe damage on EMG is pretty nonspecific Did you ever get a copy of the report?
i have set up a meeting with the drs to try and get a better handle on what is happening - have been not pushing, was taking what is said without fully understanding. during my call after reading your responses (thank you!) they said that what was first thought to be a 'variant of cidp" probably is not as the myletin (sp) or sheath is fine? will get more info next monday. synopsis of emg:
EMG Summary Table
Spontaneous MUAP Recruitment
IA Fib PSW Fasc H.F. Amp Dur. PPP Pattern
L. DELTOID Normal None None None None N N N Normal
L. BICEPS Normal None None None None N 1+ N Mild Dec
L. TRICEPS Increased 1+ 1+ None None N 2+ N Mild Dec
L. FDI - HAND Increased 1+ 1+ None None 2+ 3+ N Mod Dec
L. TIB ANTERIOR Increased 2+ 2+ None None 2+ 2+ N Mod Dec
L. GASTROCN (MED) Normal 1+ 2+ None None 2+ 2+ N Mod Dec
L. VAST LATERALIS Normal None None None None 1+ 2+ 1+ Mild Dec I will have them review with me as well (greek to me). thanks again....
EMG Summary Table
Spontaneous MUAP Recruitment
IA Fib PSW Fasc H.F. Amp Dur. PPP Pattern
L. DELTOID Normal None None None None N N N Normal
L. BICEPS Normal None None None None N 1+ N Mild Dec
L. TRICEPS Increased 1+ 1+ None None N 2+ N Mild Dec
L. FDI - HAND Increased 1+ 1+ None None 2+ 3+ N Mod Dec
L. TIB ANTERIOR Increased 2+ 2+ None None 2+ 2+ N Mod Dec
L. GASTROCN (MED) Normal 1+ 2+ None None 2+ 2+ N Mod Dec
L. VAST LATERALIS Normal None None None None 1+ 2+ 1+ Mild Dec I will have them review with me as well (greek to me). thanks again....
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