MS Specialist response to MRS...

[Wobbly]

Hi again, well I like I thought, she said the MR Spectroscopy was inconclusive, as the Brain lesions are too small to have it done.  She said she could not yet give me a Dx of MS or anything yet.  She said I do have brain lesions and she doesn't know what Deymelination Disease this is.  

She asked me how I was, I told her I'm tired of walking into walls, I'm loosing the function on my legs, my hands and fingers have been numb for three days now.  She said have I tried Amantadine for the fatigue.  I said no, I haven't so she wants me to try this for awhile and she if it helps me with more energy to feel better.  I'm also to keep taking Gabapentin for pain.

I again said, so you can't give me a Dx yet?  Even though the report said could be MS?? No, not yet and she said it can take years...I said it's been years.. she said she wants to keep track of how things go.  I again said, I am concerned that I won't be able to walk soon, my legs do not want to listen to me and get sore after a short walk.  

She did a Memory type test again, said it wasn't bad, but I cant seem to focus??? Not sure what that means.

She wants me to see the Rehab person there to check my legs and get his impression I guess of what I can do or they can do to help with them.

She DID NOT DO A NEURO EXAM.... we were there for an hour, just doing the memory test and fatigue test..

the nurse came in to tell us about the meds..she didn't know much about them..she said I should talk to my GP about getting more blood tests done..re: monoclonal bands that I had a couple of years ago and anemia to be checked??

Does anyone here use this Amantadine Medication for Fatique...I looked it up and it sure has alot of side effects...makes me abit nervous..

she said it should help the fatigue, give me more engery..its for different Neuro symtoms.. mainly Parkinson...but she said she doesn't know what I have yet... and ????  

I'm trying not to get too frustrated at this... right now I don't want to go back and see her again. ... So, I'm writing down things I want to talk to my GP about and see where that takes me...

Please if anyone know about this Medication...I'd love some info on it... I'm really nervous about taking it..

take care
wobbly
undx

[Wobbly]

Hi there.. yes, I'm frustrated and not sure why this is happening.. I asked her why the spectrocopy didn't work...she said she didn't think it would matter if the lesions were small...??  But then she said maybe she just didn't know for sure?  

There is a reason she doesn't think I have MS...but she doesn't say why.. I ask and she just says she doesn't have enough pieces yet.. the LP is neg.. VEP neg.. bladder test neg...

I'm not sure why she didn't do a Exam.. I told her about my walking and leg is really numb..she just put her hand on the top of my legs and said lift you leg...then the other...?  Then she said I'll get you too see our Rehab person to check you legs...so I have to wait I don't know how long for that as well..

the Nurse told me to take 100mg on Amantadine when I wake up and another 100mg around 1 or 2... not too late in the day as it might effect my sleeping.  I took one this morning and felt like I was flying higher then a kite... I could barely talk or move... so I didn't take the PM one... I think I'll take one a day for a week...not 2 in a day yet...

Thank for the replies everyone.. I will be going to my GP next week...with a list of things and complaints... he does get the results of all these tests and I'm sure he is wondering what is going on..

He thought I had MS along time ago ...but wanted to see if I had lesions...etc...he said he can't make the Dx...a Neuro has too..

so, I'll leave it for now...and try to relax abit... if I can.. I will continue with Gabapentin for pain and try the Amantadine...

take care and talk later
wobbly
undx

[Quixotic1]

Hi, Hon, I am so frustrated at your neuro.  She is acting as if there is a whole world of demyelinating diseases out there of which MS is only one.  That is exactly what I was afraid would happen when I heard so many people here on the forum say that their "diagnosis" was "Demyelinating Disease."   The truth is that there are only a known group of demyelinating diseases and they typically have distinct differences with MS.  It is the cloke of hesitation, cowardice, lack of self-confidence, fear of liability or disinterest.  It is not a reasonable place to stop.  

Saying a person has Demyelinating Disease and stopping there is like saying they have "Infection" and not proceeding further.  I feel a blurb/rant building on this topic.  

The diagnostic criteria used in MS only require that you have the two or more relapses and evidence of two or more clinical lesions in different areas.  If the history and physical have ruled out the mimics and the MRI is positive, then the presumptive diagnosis of MS can be made.  The need to be on a DMD (in my mind) outweighs the need to be 100% certain of the diagnosis.  

She needs to be pressed to name how likely this might be MS.  And she needs to say which "demyelinating diseases" are still in the differential diagnosis.  I suspect she would be stumped.  

Do you have ADEM? No, the clincial course and lesions do not fit.

Do you have Marburg's Variant?  No, the course is not fulminant and lethal enough.

Do you have Balos Concentric Sclerosis?  No the lesions aren't right.

Do you have NMO? - NO your disease involves too much outside the spine and eyes.

Do you have PML - NO, your lesions and course are not consistent

Do you have adrenoleukodystrophy or adrenomyelodystrophy - No, you don't have the mental, visual, metabolic and diffuse deterioration that is consistent.

Do you have radiation poisoning? Unlikely unless you really are the international spy we have suspected.

I could go on, but MS is far and away the most common demyelinating disease.  It is the herd of horses on ranch land.  When she heard hoofbeats,your neuro began waiting to see if see if a lone zebra came by, ignoring the grazing horses in front of her.  WTF?  She has forgotten the truism that we were all taught early:

COMMON THINGS ARE COMMON!

Your neuro is a loser and you need a better one.  What resources are there for you , including travel to see someone?  The status quo here is intolerable.  She is very comfortable with you deteriorating while she awaits the "Aha!" piece of evidence.  I suspect she is hung up on the fact that your MRI is atypical.

Amantadine is one of the two most commonly used meds for MS fatigue.  It was initially devised as a Parkinson Disease, then discovered to be a potent anti-viral med. Before the more modern meds, I used quite a bit of amantadine in children for treating influenza. But, it also has very good properties when used for MS fatigue.  Because it does excite the brain, vivid dreams and sometimes hallucinations can be experienced - especially early in taking it.  I recommend that you give it a try.  Start with a lower dose at a time when it is okay if you briefly see pink elephants.  Several people here on the forum have used it.

I am so frustrated for you I could just spit!

Thinking of you,

Quix

[Udkas]

Hi there,
what can I say!! Arggggggggg how frustrating that you are no further forward than what you were before. Damn, I feel your frustration...I had high hopes pinned on your scope thing for you.  Have you thought about having a second opinion? Do you like your neuro?  Some neuro's try to help but are reluctant to give an MS diagnosis just in case it's not.... which is fair enough too, but from what I read and what people say on here it sure sounds like MS but hey I haven't spent years at med school but your symptoms sound quite debilitating and progressive.

I just don't get why they don't do neuro exam especially when you are progressing and having problems.  I have had a neuro exam every visit, even when I have gone for my LP or my nerve conduction studies he still did one I think to keep tabs on how I am traveling and if I am getting worse and he always tells me what he thinks about it after he has done it.. (wish you had my neuro).. he is lovely.

I don't suffer too much from fatigue, it is not my primary symptom so I can't say I have tried or needed to try amatadine.  I hope someone on here can help you but all meds are different for every person too.  Like I take the gabapentin for pain and it works a treat for me but some people on here hate it.

Take care, keep us posted,

Cheers,
Udkas.  

I don't suffer from

[Karen99]

I am sorry that you still have no answers.  I wrote a very long response to your post, but deleted it because it turned into a rant of my own, on your behalf.

To sum it up though,  your neurologist is a cowardly donkey.  She should have set you down and spent at least 1/2 hour doing a neuro exam.  The next 1/2 hour should have been spent talking and LISTENING to you.  Is she that green behind the ears?  Oh, I've gotten myself started........Why isn't she observing the functioning of your legs for herself?   Arrhhhhh!

To answer your question, I've never tried amatadine.  Too afraid of the side effects.  I have heard it works for some folks and tolerate the medicine well.