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The battle: MS or ALS, where to next? I've done an EMG.

I've recently been hospitalized and a host of tests was ran on me: an MRI, an EMG, blood tests for virtually everything. Well, lo and behold, the MRI came back saying that there is demyelination going on but that it's subtle, so an EMG was ordered. That came back - and I quote "perfect". The problem I'm faced with right now is that I've set appointments with two Neurologist specialists in the upcoming few days, pending a "high order" review from the main doctor who also handled my case while in the hospital to co-ordinate towards a diagnosis.

My symptoms include (* means the symptom happens often, ** means the symptom is close to permanent):

- (**) A clear, tracked and proven (by 3 of my friends) cognitive decline, in simple terms, I feel slower.

- (*) Tingling everywhere in my body, sometimes it feels like a needle.
- (*) Weakness in a part of my body, at times, very rarely it feels like it stops responding to "the signals"
- (**) I have extreme vertigo and it's constant. It's not even the kind where the room is spinning, I just feel out of equilibrium
- (**) Constant fatigue. I've been fatigued like this for the past good, good few 5-6 years.
- (**) Muscle fasciculations everywhere (even the scalp) that get worse with bad sleep.
- (*) Sometimes I get a "skin rash" that feels like tingling when I'm sweating, it's as if my sweat has changed and it's making my body itchy
- (*) Crushing pain, as if someone was hammering a spot, usually close to jaw or ear.

Howerever, what I don't experience is:

- Stiff muscles
- Muscle pains
- Slurred speech
- Difficulty in swallowing or chewing.

I'm out of ideas of where to go and get tested to find out what exactly the cause of this is. I'm covered for most tests but it's gonna be at least a week until I meet with a practitioner and the purpose of that meeting is to re-review my findings (the MRI, EMG, blood tests), so, not sure what to ask.

Any help is appreciated.

  1. Hi again, @unskilledfisherman. This period of waiting is the worst. I wish you could get in to see a neurologist sooner. MS is a strange disease. It presents differently in everyone, which is how it earned its nickname as the "snowflake" disease. So it is possible to have MS without having all of the symptoms. However, there are also several health conditions that mimic MS. Here is a list of them: Some forms of arthritis, like psoriatic arthritis and rheumatoid arthritis, can cause those symptoms as well, though they do not cause lesions on the brain. You might want to ask your doctor whether he or she has considered those conditions. If your doctor suspects MS, you will likely also have a lumbar puncture, which is used to confirm MS. Here is an article about the lumbar puncture: I have a feeling you will know a lot more after you see the results of those test, but for now, it's all just speculation. They best thing you can do is to read these articles, and then keep very, very busy until your appointment. Distraction is your friend. I hope this helps, and that you get answers and relief. Please keep us posted if you feeling comfortable doing so. - Lori (Team Member)

    1. Thanks a lot for the Lumbar Puncture suggestion. It was never even suggested to me, nor was it brought up, but now that I read, it's to determine whether or not antibodies are created that in fact attack the myelin sheath. I'll request it too. Unfortunately, there are brain lesions as I've specified, do you have any other suggestions to this end?

      1. Hi @unskilledfisherman. I am guessing that your doctors will discuss the next steps at your follow-up appointment based on your test results. Brain lesions can have many causes, including strokes, epilepsy and Lyme disease. If the tests indicate something else is the cause, then you might not need the lumbar puncture. There is little you can do now until you get those results. I hope the time passes quickly for you so you can move closer to a diagnosis. Best wishes! - Lori (Team Member)

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