[Elle114]

Hi all,

had my first neuro appt and now I'm even more confused. He feels pretty certain that I have MG not MS, but he can't explain the electrical zaps I get everywhere or painful muscle spasms, cramping, tingling, pins & needles. He says MG doesn't cause pain then how can he be certain I have it when I also have pain?

He also says that MG doesn't cause brain lesions, but my MRI shows spot. He said it could be from a migraine. Basically he saw my drooping eyelid and couldn't get past MG.

I'd be ok with MG dx, if I wasn't having shooting pain while he is saying MG doesn't cause pain. Oh yes the blood test for MG was normal also. I'm so confused.

[Erin524]

I googled MG and pain, to see if I could find anything about pain being associated with it. Found some sort of forum for it, and there's a bunch of people there reporting that they have pain. So apparently you're not alone there on the pain.

http://www.topix.com/forum/health/my...HG01120156A1G2

I bet that MG probably has some pain associated with it. If it affects the muscles, it might be some sort of muscle pain or something. All I know about MG is just what I read about it in the last five minutes. So, this is basically me offering an opinion that I've gotten from five minutes of reading.

I'm still a bit gobsmacked that a doctor told me once (basically swore to me) that multiple sclerosis is not painful. Because that's one of my big issues with the MS. It hurts a lot sometimes. Neurological pain hurts.

[doydie]

Erin I would like for the doctor to have MS just for one day and experience the pain that one has with it. Maybe he will change his mind.

[tkrik]

Originally Posted by Elle114

Hi all,

had my first neuro appt and now I'm even more confused. He feels pretty certain that I have MG not MS, but he can't explain the electrical zaps I get everywhere or painful muscle spasms, cramping, tingling, pins & needles. He says MG doesn't cause pain then how can he be certain I have it when I also have pain?

He also says that MG doesn't cause brain lesions, but my MRI shows spot. He said it could be from a migraine. Basically he saw my drooping eyelid and couldn't get past MG.

I'd be ok with MG dx, if I wasn't having shooting pain while he is saying MG doesn't cause pain. Oh yes the blood test for MG was normal also. I'm so confused.

There is an MG forum on NT. Maybe you can ask some of our MG members about their experience with pain and MG.

The lesion could be from a migraine as your dr. mentioned. That does happen and when I had my first MRI and it showed 3 lesions, migraines and viruses as well as small trauma (like bumping my head) were all discussed as possibilities.

[NurseNancy]

i recently got an MS association brochure that had an article on MS pain.
my neuro says he doesn't believe in MS pain but i have MS and also have a lot of pain.

i feel that whenever you're dealing with the possibility of the diagnosis of any serious illness that you should consider getting a second opinion.

start to get copies of your mri's and any lab reports etc. start a medical file on yourself. whenever you see another dr it will be very helpful to bring the information with you.

good luck and let us know how you are.
and btw....welcome to NT. glad you're here.

[egmcarthur]

I'm also very confused about my 2 MRIs. The first was ordered by my neuro to explore what we believe are Simple Partial Seizures. He SAID that it showed a spot that could have been an aneurysm, but said it didn't show anything about seizures. Told me I didn't have PD, which runs in my family, based on my "normal" gait.
He also ordered an EEG.
After the EEG, told me that although the folks who read the results noted some abnormalities, it was because of my age (I'm 64!)"

Now have lots of shakiness, jelly legs, electrical shocks. See him again in August. Could this be late onset MS?

[mrsD]

While you are waiting...I'd get tested for B12 levels. Your symptoms are consistent with poor B12 in the body. This is easily and inexpensively fixed. However, the lab ranges reported may still be the OLD low ones, and so posting here your concentration in numbers and qualifiers (like pg/ml or nmol/L == the latter have to be converted to pg/ml)...would reveal if you need a supplement to raise yourself to norms.

Many drugs deplete B12...metformin for diabetes and all the acid blocking drugs for GERD and heartburn are the most common ones. So many people today (new estimates are 40% may be low)...have this problem and doctors remain clueless and don't think of it!

Originally Posted by egmcarthur

I'm also very confused about my 2 MRIs. The first was ordered by my neuro to explore what we believe are Simple Partial Seizures. He SAID that it showed a spot that could have been an aneurysm, but said it didn't show anything about seizures. Told me I didn't have PD, which runs in my family, based on my "normal" gait.
He also ordered an EEG.
After the EEG, told me that although the folks who read the results noted some abnormalities, it was because of my age (I'm 64!)"

Now have lots of shakiness, jelly legs, electrical shocks. See him again in August. Could this be late onset MS?

[NurseNancy]

i was dx'd with MS. when i first experienced a gait disturbance and balance issues i also had A LOT of zapping/electrical feelings in my leg. it was so hard to explain to my drs but that's what i felt.

over the next yr it eventually disappeared tho.

[SallyC]

Welcome Egmcarthur.

[egmcarthur]

Originally Posted by mrsD

While you are waiting...I'd get tested for B12 levels. Your symptoms are consistent with poor B12 in the body. This is easily and inexpensively fixed. However, the lab ranges reported may still be the OLD low ones, and so posting here your concentration in numbers and qualifiers (like pg/ml or nmol/L == the latter have to be converted to pg/ml)...would reveal if you need a supplement to raise yourself to norms.

Many drugs deplete B12...metformin for diabetes and all the acid blocking drugs for GERD and heartburn are the most common ones. So many people today (new estimates are 40% may be low)...have this problem and doctors remain clueless and don't think of it!

Thanks for this! I do take an acid blocker, as reflux triggers my asthma, so this could well be a factor. I'll add it to my growing list of questions for my gp!