Repost: Just Being Paranoid?

[uush]

(Reposting, hoping for response:) I had an EMG/NVC yesterday, I get them periodically because I had been dx with PMA (progressive muscular atrophy) I was told that they were only going to do my left side as that is my weakest side, for example on a prior EMG/NVC my left hand showed NR (no response) and they could tell something w/my proximal muscles... (atrophy) but that ended up not being the case. The Tech did the NVC then the Dr came in to finish with the EMG, which have been getting more painful, I am not sure if that is relevant. In my previous tests I was told I had Polyneuropathy, & some Brachial plexus damage. Then I had 2 more but was told nothingI Then when I was in the hospital a few months ago the Neurologist there told me I had some muscle abnormalities that showed on my last few EMG's/NVC's but I thought nothing of it because he also told me matter of factly that my protein level in my CSF was 109 (normal is 45) & something about Oligoclonal bands.So yesterday the Dr did all my limbs except my left hand/arm & when I asked him why he said "I am sure I will see what I am seeing in the rest of your extremities." & I said my Ulnar nerve is damaged badly in the left hand... he stopped me & said "I am sure that the Ulnar is damaged..." then he said "I am going to resend in the tech to check something out." Then the Tech came in and did some more tests on my right arm. (Please note that this Dr did not have my previous records. I was supposed to have this test done on the 6 but because of snow it got canceled & the quickest appt. was at another office of the same practice. Basically he did not know what the previous ones said) I have some other health issues that are not related to the Neurological Illness but they do stop me from receiving treatment. The one that is stopping me from receiving anything is HCV (Hep C). The Interferon will make the PMA progress more rapidly & any Medisine for the PMA will damage my liver more.
I dont know what to think of my tests yesterday. Usually Drs will tell you if it is good news or nothing has changed. But when I asked him he said "I wont know anything until I look at the numbers) Like I said, I have had Drs tell me results as they look at the screen. I don't know if maybe he wants my primary Neurologist to tell me the results or if maybe my other Drs were wrong about the dx? I guess my fear is that they've  are going to tell me I have ALS not PMA! I already can barely walk & lately I have been getting food caught in my throat & my stomach... I have had badness (diarrhea) for months (wile taking 100 mg of MS Contin bid & 4 mg of Dilaudid qid!)  Well lets just say I have had a couple accidents & I am not talking about number 1... am I just being paranoid for no reason? or does it sound like the Dr found something?

[uush]

I forgot this was up. Unfortunately I was correct. It turned out that the PMA had turned into full upper and lower Motor Neuron Disease. aka ALS and because of the swallowing issues I now have a PEG.
Thank You,
Dr. R

[uush]

I forgot this was up. Unfortunately I was correct. It turned out that the PMA had turned into full upper and lower Motor Neuron Disease. aka ALS

[Dr. Kokil Mathur]

Hi!
I cannot really comment on your EMG/NCV tests on net, but yes, there appears to be some confusion. You need to check with your primary doctor. If you have two oligoclonal bands in the CSF and not in the blood then this could be due to multiple sclerosis. Also, chronic diarrhea can cause nutritional deficiencies of vitamins and minerals. These could cause your symptoms as well. If you have a bad gastric reflux, then also you can find it difficult to swallow food. Please consult your PCP regarding this immediately. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.