Deteriorating too Fast???

[Zacksmomi]

Ok this is really something that is starting to bother me. I was dx'd with MS in Feb of 09 after severe parasthesia and near paralysis in my right arm lead to MRI's.  That was my first really noticable attack ever, but looking back, I am wondering if I have had this since about 1992.
My concerns are, my arm never went completely back to normal.  I was under the impression that with RRMS, in the beginning atleast, symptoms generally return to normal.  I have permanent parasthesia in my hand and muscle tension in my neck and shoulder area.  
Over the course of this year I have had eye issues, L'Hermitte's sign, extreme fatigue, heat sensitivite, leg weakness, muscle spasticity in my hips, random muscle spasms all over, numbness and tingiling on my face, eye and facial twitching and cell phone vibrations all over. My MRi even shows concerns of brain atrophy.
I have had several people make the comment "you seem to be deteriorating fast, is that normal?" So I am now wondering...Is it normal???

I am thinking that some of the crazy things that I can't explain from my teenage years may be an answer here.  When I was 17 my vision changed literally over night and I was dx'd with an astigmatism.  
I started to become sensative to heat and was not able to sit in hot tubs with my friends.  
At age 20 I developed a problem with my stomach that no one could figure out so I gave up on it.  I still have issues today with eating sometimes.  It is like a muscle spasm in my upper stomach that won't let me keep food down.

I know the DMD's are supposed to be for people newly dx'd.   My Drs all say to forget the past and focus on the now.  My question is, is it possible to have deteriorated this fast in my first year with MS, or should I be looking more into my history??

I am currently on Rebif and have had antibody tests to see if it is working.  That plus my injection site reactions lead the Drs and nurses to think that my body is accepting it, but then why am I having so many attacks?  I have had 4 this year. My injection site reactions are horrible and I am switching meds, but should I really be taking the DMD's if my MS started 17 years ago???

Thanks
D

[truelove47]

Thank you your statements on this.

You also helped me because i really can't remember "how I used to be"

And quix it "sure is what it is  "

What does MS look like?  I don't know


be well all    Linda

[Zacksmomi]

thank you so much.  You have helped put me at ease.  I forget not to listen so closely to people who aren't as well imformed about this DisEase.

Big Hugs
D

[Guitar_grrrl]

D, your story sounds so much like mine.  I've had symptoms for probably 15 years.  This year, I've had three, three last year, and the residuals don't seem to be going away any time soon.  

I'm switching meds on the advise of my neuro (Rebif to Tysabri), just because things seem to be snowballing at a pretty good clip.

I'm calmed by what Lulu and Quix have to say about this.  Yeah, 20/20... I am where I am now, and I'll take it from here.  One day at a time.  I'll never know.  What I DO know, is after my 4th dose of IVSM this AM, I went downstairs to work, and put in a full day.  Yeah, I'm stiff, spastic, lurching, and my hand shakes on the transducer.  But I can still obtain quality images (today).  Tomorrow may be totally different.

Hugs, and hang in there,
Guitar_grrrl

[doublevision1]

If it helps to reassure you at all, I had 3 relapses in my first year after being dx'ed with MS.  I have residual effects from at least 2 of these relapses:  parasthesias triggered/worsened by heat; intermittent fatigue; recovered from diplopia only 90-95%; nystagmus more noticeable when overtired; even Lhermitte's on a fairly regular basis, which is from my first, pre-dx attack over 3 years ago.  I say residual effects from at least 2 of the 3 relapses as the third attack was strictly ON, and although I am aware of no vision loss, this can be hard to detect, there can be longer term damage not noticeable subjectively or even from a picture of the optic nerve.

Anyway, where I am going with all of this, because I'm sure by now you're thinking "This is supposed to reassure me??", after a very active/aggressive disease course during my first year, things have settled down and I am coming up on a year since my last relapse.  Maybe this is due to DMD (Copaxone), maybe this would have been the case anyway.  Like Lulu says, you'll never know how you'd otherwise be doing/have done, the point is you're treating it now and that's what's important.  I'm not sure I know of anyone with MS who has had a true remission in the way most people think of this, ie: no symptoms, no signs of disease whatsoever.  Unfortunately this is the nature of MS but this alone does not necessarily indicate worsening of disease.  Things can slow down in terms of true disease progression, and the task in the meantime is to adapt to the symptoms that do stick around, to the best of your ability.

Discuss your concerns with your neuro; if s/he shares concerns about how effective Rebif may be for you, there may be the option of trying Copaxone(actually you mentioned switching meds so maybe you will be trying this?), or if things really ramp up, Tysabri, Novantrone, ie the more 'aggressive' drugs.   However you want to ensure you give your med an adequate attempt as they take a while to become effective.  I'm not sure the antibody test indicates the drug is working per se, just that the immune system is not developing antibodies against which may negate its effectiveness.  There is no definitive measure of effectiveness; this is a judgement made by your neuro based on follow up testing, clinical signs and symptoms, basically how you are doing overall,etc and is somewhat subjective.  Keep your neuro informed of how you're doing and ensure s/he's aware each time you believe you are experiencing another relapse.  This is very important so they can evaluate your treatment plan and modify it if necessary.

Hang in there, I know it's not easy and I understand, I was really stressed out with relapse #3, I figured it was all downhill from there, and that was almost a year ago.  You never know.

[Quixotic1]

I want to clarify something about only being on a DMD if you are early in your disease.  The DMDs work better the earlier they are started.  This does not mean that they won't work 17 years into the MS process, but that they would likely have worked "better" if started earlier.  Hindsight is wonderful, ain't it - it is also not helpful for us.

We only have what we know now.  If "now" is when they discover the MS, then "now" is the best time to start the meds.  They do no special harm if started late.

Any symptoms at any time might not resolve completely.  Sensory symptoms are more likely to resolve "better" than motor (muscle) symptoms.  Remember that we have said that when a nerve repairs the damaged myelin of a lesion, the repair is never "as good as new."  So, we can often find remnants of an old lesion that seemingly has gone away when we test for it.  An example is the lingering abnormal VEP after resolution of optic neuritis or the reappearance of paresthesias or weakness when heat-stressed.

If your neuros are aware of the old symptoms than that is all they need.  Determining your course is based on what you are doing "now" and since they started seeing you.

The development of astigmatism would not have been a result of MS  (Astigmatism is an irregularity in the curve of the eyeball).  The stomach problem - would be hard to say.  Most of the nerve fibers going to the stomach are not myelinated (I believe) so that makes it less likely that it would be due to MS.  It's hard to say now.  That kind of heat sensitivity is suggestive of a neuro problemback then.

Anyone can have any course with MS.  There are no rules to say that someone can't progress rapidly or so slowly as to make it seem that nothing is wrong.  At this point your docs need to determine where you are.

It is what it is - That is one of the truest statements anyone can make about MS.

As far as the rule-outs, you could ask them if there is any other possiblility for your diagnosis.  Have all avenues been looked at.  And remember that Lyme should be evaluated with a Western Blot and not just the screening ELISA test.

I, too, am sorry that you are having such a course.  Big HUGS,

Quix

[rendean]

The advice above is correct or at least it's what my neurologist told me at my last visit since I've had either one long relapse since January or several superimposed on each other since then.

I do have permanent weakness in my hip flexors and permanent parathesias. Neuro said some of it may eventually improve but don't be surprised if some things are permanent.

I'm sorry you're having such a tough time. I know exactly how you're feeling. Hang in there as this too shall pass.

Ren

[Lulu54]

There's a common misconception about what happens during a remission ... most MS patients do not return to the state their body was before the relapse.  

We return to a quieted down phase for our disease, but unfortunately there is usually some type of permanent symptom left behind from each relapse.  This is common.  It is the very lucky person who returns to where they were before the relapse occurs.

Yes, you should be taking a DMD as long as possible.  If your MS continues to relapse and remit, which it sounds that way since you have had separate attacks over the year, the DMD's are your best hope to slow them down.  Four relapses may sound like a lot, but without the Rebif it might have been more, you will never know.

You should be due for another MRI in February - those pictures will help to tell your neuro if the drugs are working.

I wish there was more that I could tell you.

be well,
Lulu

[jensequitur]

Four attacks a year when you've just been diagnosed is actually perfectly normal.  Or I should say not out of the ordinary.  I had at least four the first year I was diagnosed.  And despite what the doctors tell you about recovering fully from a remission, it's not always true.  I think I have about 50% recovery from symptoms.  The face stopped being cold, and my orthostatic hypotension went away, but the legs still don't work right.

[Amyloo]

I am really sorry for your situation; it sounds really tough.  Did you have all testing done to rule  in or out any diseases that mimic MS?  Sometimes people can have more than one thing going on.  God bless you.

[Wobbly]

Hi D.. do you not have any times where you have a remission?  Does your Neuro know this?..

do you write all things down, how long they last, get worse, or better.. do you take any other meds for pains etc?  

I would ask your drs about this and see if they think it's a normal progression?  

I hope other jump in and give you some ideas.  Sorry I can't help much here.  I'm Dx with PPMS and it's a none stop type of thing for me?

take care and let us know
wobbly
dx