20+ years trying to find a diagnosis

[22cyclist]

Sounds like a good plan. I am glad you have one so you are not just left out there in limbo. Let us know how everything goes, OK?

Take care
Lisa

[minnie76]

Hi,

Similar thing happened to me. GP sent me for brain MRI to check for tumor ( dizziness for a few months). No MS protocol...but they found lesions anyways. My findings said " excessive demyelination for someone of her age group"

Still in limbo though!

Hope you get some answers soon!

ps. I'm also seeing a Rheumy!

Minnie76
Dx with TN 2013

[SickANDexhausted]

I had my EMG/NCS today. I have to say it was awful. I lay on the bed with tears running down my face. He tested the right arm and leg. Those muscles are still very sore. But, the results are normal. I am guessing that this means that there is pretty strong results now, showing that this is not MS. I wonder if there should be any other testing done? Or if this proves that it's not MS? Also, he did also schedule me for a Nerve Biopsy of my foot, this was before the EMG/NCS was done. Honestly, since that was normal, I think I want to cancel the nerve biopsy. I don't see the point of it, and I am feeling gun-shy now, after how painful today's testing was.

[SickANDexhausted]

I am wondering also, if I should still ask for the spine MRI? My eyes have been much worse lately. Almost eery time that I look in the mirror (On average, 2-3 times a day), when my pupils are dilated (if I am in bright light, my pupils are too tiny to notice difference), they are uneven, and a lot of times, on pupil is offcenter in my iris. This has been going on for about 10 years. It almost completely went away when I was put on Prednisone (which makes me think it is some sort of inflammation that is causing it). But, recently, it is back and getting worse and worse and worse. Also, I am occasionally seeing "floaters". They look kind of like little pieces of thread, like on a microscope... if that makes any sense.

Or should I be satisfied that the MS possibility has been fully explored, and it is not that? I do have an appointment with a Rheumatologist at the end of next month. I don't hold out much hope for him though, as my Aunt went to Him, in January and didn't like him, and he doesn't have great reviews. I also have an appointment with a different Rhematologist that I have heard lots of good things about, but not until October.

[SNOOPY]

I am wondering also, if I should still ask for the spine MRI? My eyes have been much worse lately.

If you so choose you can ask for a Spine MRI. However, spine or spinal cord problems/damage would not affect vision.

Spine problems/damage can cause problems from the point of damage down.

It almost completely went away when I was put on Prednisone

Prednisone is an anti-inflammatory medication and is used for may reasons, conditions, and diseases. Simply having a positive affect on symptoms does not mean the cause is related to MS.

Best wishes in your diagnostic journey.

[aspen]

SandE, an EMG is done to rule out diseases that cause damage to muscles, nerves, or the junction between nerves and muscles.

I'm glad your results were normal .

EMG's don't rule out anything that is brain or spine-related. My neuro has referred me for one -- he said it wouldn't rule ms in or out, but a normal EMG would rule out some other mimics.

I can't help you with the nerve biopsy -- not sure what that is for -- but if you're in limbo, any information is helpful and if your neuro thinks it is important, I would do it.

[RColeman]

I had my EMG/NCS today. I have to say it was awful. I lay on the bed with tears running down my face. He tested the right arm and leg. Those muscles are still very sore. But, the results are normal. I am guessing that this means that there is pretty strong results now, showing that this is not MS. I wonder if there should be any other testing done? Or if this proves that it's not MS? Also, he did also schedule me for a Nerve Biopsy of my foot, this was before the EMG/NCS was done. Honestly, since that was normal, I think I want to cancel the nerve biopsy. I don't see the point of it, and I am feeling gun-shy now, after how painful today's testing was.

Actually an EMG/NCS if it was normal...then the focus shifts to the Central Nervous system..that would not rule out MS. MS is central nervous system issue.

The EMG/NCS would help rule out things like ALS, peripheral nerve damage, Muscular Dystrophy.

I would continue with the biopsy.

[SickANDexhausted]

Here is the Neuro's notes updated from today's visit:
"Assessment and Plan

The following list includes any diagnoses that were discussed at your visit.
1. Pain in limb
2. Proximal muscle weakness
3. Abnormal reflex
4. Skin sensation disturbance
Discussion Note
A. PT WITH PAIN-- NUMBESS--WEAKNESS HERE FOR EMG TO EXCLUDE PNS DISEASE (FOCAL NEUROPATHY , RADICULOPATHY , POLYNEUROPATHY , MYOPATHY , NEUROMUSCULAR DISEASE.

B. GENERALIZED WEAKNESS AS WELL AS GRIP WEAKNESS COULD BE FROM FATIGUE OR OTHER FACTORS OR FROM CTS/PNS DISEASE. HOWEVER WITH WEAKNESS WITH PERIODIC FLUCTUATIONS NEED TO EXCLUDE NMJ DISEASE.
PLAN
1. EMG / NCS
2. REP STIM WITH EMG/NCS
3. AUTONOMIC SYMPATHETIC STUDIES "

I wish that I could understand any of this. And, I would like to understand WHY the nerve biopsy is needed. I am extremely nervous about anymore testing. Today was so painful. You would think that since I deal with so much pain every day, that I would be immune to it by now. But, it's like It's had the opposite effect. I am so tired of being in pain, that I am now so sensitive, that I just can't tolerate anything additional, whether that be bumping my elbow on something, or a small scratch. I just can't tolerate any extra pain, it's like it throws me over the edge. I don't if that makes any sense, but I am almost in tears just thinking about anymore painful testing....

Plus, it almost sounds like the Neuro's plan is to repeat the EMG/NCS. WHY??? If today's test was normal, what is the point in repeating it?

[aspen]

The nerve biopsy is to rule out peripheral nerve issues (neuropathy) and a couple of other mimics. The EMG with repetitive stimulation is a rule in or out for something called myasthenia gravis, from what reading I've done. Possibly for other things too, I'm not sure, but I looked into this because several of my doctors have mentioned MG as a mimic in my situation.

I truly wish my neuro was being this thorough. I understand your fear of pain; perhaps they can give you something. He is taking your symptoms very seriously though, and I would be grateful for that.