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Multiple Sclerosis Community
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956292 tn?1334058469

Treating MS Symptoms w/out DMD

Hello.

I am getting ready for a follow up with my neuro on Friday. He beleives I have MS and I am "at" probable MS at this point. After an unsuccessful LP in which the hospital did not do required samples neeeded, (we were hoping for this to tell us more) my doc is looking for me to have a flare or change on MRI for a definitive dx of MS and start a DMD treatment

So I guess my question is if he can not start me on DMD..at this appt., is it possible to ask for tx. of my symptoms just the same if he can not find other cause for them (spasms)

I have been having spasm issues in thumb/hand and the heat just about killed me this summer..I know these may not be what he is looking to constitute a "flare" (I am guessing) but can I ask for meds to treat these isues even if it is not a DMD for MS?

Alot of my issues have been sensory and he dx. me 1st Appt. with TN and started me on meds.

Thanks Jibs
21 Responses
147426 tn?1317269232
BOB - where in the world did you get the idea that

"For the most part, "Clinically Definite MS" is "Probable MS" until proven by histopathology."

If histology (looking at the tissue by microscope) has NEVER been a criteria in determining MS.  Yes, MS has been both proved and disproved at autopsy, but that is not a consideration in the diagnosis of MS.

Clinically Definite MS is Clinically Definite MS.  Period.  This means that the needed criteria for diagnosing MS using the History and Physical Exam, plus any labs or testing (ParaClinical) is satisfied for making a firm diagnosis.

You statement or quote (if that is what it is) basically states that EVERYONE with a diagnosis of MS really can only be said to have Probable MS unless they are dead and the brain has been looked at or they have had a brain biopsy.  That's absurd!

There is even some doubt with histology.  I have seen experts be absoutely sure about the same tissue sample and have opposite diagnoses.

On the other hand I have to absolutely agree that it is foolish and uninformed to see a patient in flare and expect that an MRI will show perfect changes with each lesion representing the new symptoms.  That is the whole idea behind the Health Page:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions-vs-Symptoms/show/61?cid=36

Now I think you have misinterpreted the comment about the doctor waiting for a new flare or new MRI lesions.   If the doctor is now looking for new lesions, then he is looking for evidence that Jibs disease hase disseminated in Time.  A new flare would show the same thing.  If the new flare showed different symptoms then the Time requirement would be fulfilled.

Jibs - you have had Trigeminal Neuralgia and now motor spasms of the thumb (silly, ALL spasms are motor), but I meant to distinguish the spasms from sensory symptoms.  So you have had symptoms that show Dissemination (spread) over Time and Space.  These are two requirements for MS.  Are you saying you have no CNS lesions on MRI?  You could be treated NOW with a DMD if the reasonable mimics of MS have been excluded under the guidelines of a CIS - Clinically Isolated Syndrome.

Do you have MRI lesions already?

Quix
Avatar universal
Hi Jibs,
I am curious about your spasms, are they just where your thumb twitches or do they make your hand contort.  I sometimes get the twitch thing where my thumb shoots out constantly.... I am going back to my neuro soon, will let the forum know what he has to say.

I hope you get some answers soon.  I was given the probable MS diagnosis years ago then they changed their mind, so confusing being in limbo.
Udkas
572651 tn?1531002957
Jibs,  This doctor most certainly CAN treat your symptoms.  They are real, whether you have MS or not - which you probably do according to him.  I can't tell you which drugs to ask for but maybe someone else here can jump in and help.

Have you asked hm if it would be possible to call this a clinically isolated symptom (CIS) and begin DMDs?  It is recognized that they can start drugs even if you have only had one episode.

good luck and keep us informed,
Lulu
956292 tn?1334058469
Hey,

How are you. My thumb goes into a cramp and closes up or should I say bends and I can not open it. It is so painful..I had it happen 1x on left and has happened 2 more times on right. My left thumb has gone numb and comes back.

The first episode in June and then about end of August again in left and the past 2 weeks I have been having these issues in my right thumb. It leaves my hands very weak and my thumb weak to hold anything. I can not say twitch but more big time cramp. inside bend of thumb

I'm interested to see what neuro says as the first time he did not think to to much of it..

Jibs
1453990 tn?1329235026
DMDs don't really "treat MS."  They slow the progression of MS.  Earlly treatment with DMDs is the patient's best chance for preventing major increases in their EDSS (Kurtzke Expanded Disability Status Scale).  At least that is what the neurologists and comanies publish in the literature.  They even start RIS and CIS patients on DMDs.  

Doctors can always treat your symptoms, but just because you have a flare, it is pretty "ill informed" to think that there will be an accompanying change on the MRI.  Many of the clinical manifestations of MS are likely to be caused by lesions too small for the MRI (and I don't care if it is a 7.0 Tesla MRI) to detect (so called invisible lesions.)

For the most part, "Clinically Definite MS" is "Probable MS" until proven by histopathology, and they can not cut my brain up until I'm dead.  There have been some rare case where a biopsy of the brain looking for a tumor, etc. has proven that the plaques are MS.  

At this point, spasms of the thumb and hand might respond to an anti-seizure drug like Tegretol and/or Keppra.  Treating those would not effect the possibility of a flare in the future.

Bob
956292 tn?1334058469
Hi and Thanks,

My convesation from that appt. was a blur as I was pretty devestated from the LP going wrong (So was he) I know he mentioned CIS but can not remember honestly to what extreme.

I am going to ask him if we can start a med and who knows what this new issue will bring. I appreciate that. I just know this thing with my hands is not normal..Majority of symptoms have always been left sided so now with right sided issues I am getting nervous.

I thought carpel tunnel but although I use computer at work it is not alot of typing, more mouse useage and I don't feel it in my wrists..

Thanks so much I am gonna ask.Jibs

(I've got nothing to lose)
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