my Dx? concerns..

[Wobbly]

Since I got my Dx of PPMS and told I can only get meds to help my symptoms and not DMD.  I am taking Gabapenting.. up to 1800mg a day now.. my legs feel abit better, with the burning, tingling.. they still get weak if I go out for a trip .. to the store or whatever.  and in the evenings I still get the deep achy pains in my thigh...left or right..

I do not feel I have the right Dx?  Not sure why... but I feel better, and if I had PPMS...wouldn't I be getting worse and not feeling better?  I'm not back to how I was a few years ago.. but I have alittle more energy..for a short time.. better then a few months ago?  So.. I'm confused about my Dx.. and if I should tell the Neuro I'm confused about it and mention how I'm feeling ?

what do you think?

thank for any info on this...
wobbly
dx PPMS

[truelove47]

When I was at the neuro on nov 4th they spoke of IV steroids once a month for me'

#1 Do they work of spms?    

Also, I"m nervous about them because when i tore my rotator cuff from falling down the steps, my family doc put me on oral steroids and i got a bad bout of shingles.

#2 Could i get shingles again from IV steroids?  Thanks Linda

Hope you are well************

[shermay]

From my understanding, it is very difficult for the Neuros to make a decision from secondary to progressive.

Get in touch with your Neuro and let him/her know what is going on.  If there is any chance that you are secondary, then DMD would help you.  

They may well put you Tysabri (they would here in France anyway), so from my point of view I would make that call and see what they have to say.

Just been googling around and there is a category called Progressive Relapsing MS.

Either way get in touch, there may well be a treatment option out there for you.

How and why did they give you the dx of PPMS??  Sorry I’ve forgotten:(

Hugs,

Debs xxxxxx

[Erin0313]

Quix,

  Wow call me clueless (and some days I am). Thanks for the info on the steroids.

  I don't want to hijack Wobbly's page here but could you let me know if this applies to SPMS? I am still dx with RRMS but think that with the rate of decline my right side is now almost as weak as my left, and almost one flare on top of the other I have moved to SPMS.

  Will steroids still be beneficial if this is the case? I agree with Cass we are so lucky to have you.

Wobbles keep us posted and sorry for the bad advice :(

Erin

[cassrox]

Quix - we're so lucky to have you!

Cass

[Quixotic1]

The ongoing disability in MS is not related much to the immune inflammatory action that we receive steroids for.  PPMS in particular is noted for its lack of inflammatory activity.  If you remember the T2 hyperintensities are mostly the result of the antibodies attacking the myelin through inflammation.  And it is these repetitive bouts of inflammation that cause us to accumulate O-Bands in our CSF.

PPMS is noteworthy among the types of MS in that 40% of people with PPMS have no O-Band production at all.  Presumably this is due to the lack of the inflammatory attacks.  The progressive disability in PPMS is apparently due to the direct degeneration of neurons - often without antibody attack first.

I make this point because steroids have little effect in PPMS.  The main action of steroids in MS treatment is to counter inflammation.  If there is no inflammation the steroids aren't much use.

Still, Wobbly, it is definitely a good idea to discuss this with your neuro.

Quix

[cassrox]

I agree with the others about expressing your concerns to your neuro. If there's a chance that DMDs may still help you, then it's worth bringing up.

Best of luck!

Cass

[Wobbly]

thanks everyone...I'm writing this down in my timeline and will let the Neuro know asap..

thanks again
wobbly

[Erin0313]

Sorry about the dx. I am still hanging in with RRMS as my dx even though I think it is SPMS I wouldn't say that to my doctor as I don't want to be taken off of the DMD's.

First I would agree that you should bring it up to the neuro. Any chance of getting the DMD's would be worth a conversation. What could it hurt right?

Second, I am currently being treated for symptoms (it's actually a long flare but they said symptoms) and the treatment is IV steroids. It's not a DMD but would be great to lessen any inflammation that is doing damage while causing your pain. If the doc won't budge on the DMD's maybe having high dose steroids as a "symptom" treatment monthly would be an option.

Good luck - keep us posted
Hugs,
Erin :)

[truelove47]

Just wanted to say hi and send you good thought and prayers

Hang in there for us                Linda

[PastorDan]

Oh, and she chimed, while I was typing!

[PastorDan]

I'll tell you my gut reaction, Wobbles, with no medical basis whatsoever.  I don't know what it takes to count as a remission, but if it might help you get nearer to meds that might help in the long run, I'd be asking the question, at least.

I know that, if our dx is wrong, we can be given meds that could do us harm (like that couldn't happen anyway, huh?), but I'd feel better pointing this concern out to my doc & see what he says.  Someone with better knowledge of the risks & benefits of DMDs might want to chime in here, as might anyone more familiar with the differential dx of pPMS vs. RRMS.

[Quixotic1]

Hi, Kiddo.  I think this is something you should discuss with your neuro.  But, PPMS is not that predictable.  A person may have PPMS and have a very slow progression of disability.  And there may be some periods where the symptoms stabilize.

But, we have to make a couple things clear.  One is that the course of PPMS refers more to the progression of disability and not as much to the behavior of symptoms, though the two certainly overlap.  An example would be that once weakness develops in a muscle group, you would not see a return of strength.  Disability has a lot more to do with muscle strength, coordination, - the motor nerves - than with the sensory nerves.

When you look at the measures of "disability" you see that they have a lot to do with your ability to ambulate and to accomplish the activities of daily living.  Those are pretty exclusively the function and coordination of motor nerves.  The sensory nerves, with paresthesias and pain don't play much role in the assessment of disability.  The other equally important, but less assessed, function is cognitive.

Pain, paresthesias, numbness, fatigue, heat intolerance, and such are all more related to what is referred to as "Quality of Life."  I have never read anything that says a person's QOL can't improve temporarily in PPMS.

Also, there is nothing that says that symptomatic treatment is not effective in PPMS.  You are receiving gabapentin for the paresthesias and nerve pain.  That can be effective even though the sensory nerves are damaged.  So your legs "feel" better on a hefty dose of gabapentin.  That is not true, basic improvement of your nervous system, though it is wonderful improvement to your quality of life.  My question would be whether or not you would feel better without the gabapentin at all.  What I noted from what you said was that your legs remain weak if you use them much.  We don't have meds that restore strength to weakned muscles.

Now, the having more energy.  That's a hard call for me.  Certainly relieving some of the pain you had been in could give you more energy.  Chronic pain is very draining.

So I don't see a contradiction from what you've said.

The answer to your question is "Yes".  You should tell your neurologist about the way you are feeling.  And ask these very questions.  I think he would tell you that it is possible to "feel" better at times, but the underlying disability doesn't improve.  You and your neurologist should be on the same page.

And I am not saying that there is no possiblility that the PPMS dx is wrong.  I was just offering an explanation of what you are seeing as a contradiction.  I also realized that what I said is quite a bit different from what I have always said as how we determine the category (type) of MS.  I have always said before that it is determined by symptom.  But, when you read the descriptions of SPMS and PPMS you see more reference to the progression of disability despite the behavior of symptoms.

I don't think anyone would ever be diagnosed with PPMS with only sensory symptoms.  I may be wrong, but the hallmark of PPMS is a progressive hemi-paraparesis.   This means an increasing weakness of both legs.  This is almost always the major early sign, before weakness of the arms, torso and breathing.  This is NOT a hard and fast rule, but a generalization.

Quix