Multiple sclerosis/ doing a rapid decline/ desperate need of HELP!!!!

[crissycarosella]

Six months ago I had bizarre symptoms and have since gone downhill.  I had seizure like episodes, dragging legs, numbness on left side of body, facial tic and dystharia.  I was recently diagnosed with MS and possible epilepsy pending an EEG as I have been losing conciousness during these seizure epsisodes.  I have had an abnormal MRI that showed right paritel lobe lesions.  My spinal MRI came back normal.  
Here is my problem.  They tried treating me with solumedrol and I had a severe allergic reaction and a seizure where I lost conciousness repeatedly for several hours.  How do you control execerbations wiithout steriods??  I am currently taking Avonex and am violently ill on it and super depressed despite taking an anti-depressant.  My symptoms are getting worse.  I fall twice a day at least, my vision goes in and out, bladder control issues, severe tremors and body jerking.  I do bizarre things like put the milk in the cupboards, forget everything and have vertigo that makes me feel like I am on a carousel constantly.  WHY AM I SO SICK??????  WHY am I declining like this??  How is this RRMS if I have had no remission?  Can you have progressive MS without the positive spinal?  I am doing my Evoked potentials test on Monday.  I am using a walker but am too weak to squeeze the hand brakes and often to weak or trembling to walk with it.  Has anyone experienced this? Any medication suggestions to help with this?  I prayed the Avonex would help!  Thank you.

[crissycarosella]

Thank you so much for the information.  I am seeing a neuro specialist but he is also a clinical researcher which is good and bad.  Sometimes when atlking to him I feel more like a test subject than a patient.  He did say to research treatments so will ask him about copaxone.  Have you had any luck with maintenance meds?  My tremors are HORRIBLE!!  I keeep falling.  Nothing has helped thus far, more on left side.  I have it both when resting and up and moving.  I am going for EVP today and to get JC results, not sure if he was thinking of Tysabri because when my husband researched it was the only med that seemed to require test.  Hugs!

[sllowe]

ChrissyC,

Hi there - welcome to the forum. Do you see an MS specialist? I hope you are indeed not progressing :(  Sounds like the possible epilepsy can be a compounding issue here for you. I hope you are in the good care of a doctor who can sort out, what is exactly causing what.

I do not know of other meds used for exacerbations besides the steroids. Only thing I can offer while you go through these additional testing is to try to remain calm (I know, easier said than done), steer clear from anything that can cause any sort of anxst for you. Keep your thumb on the docs, and press for some therapy to help with the vertigo, and stumbling.

Sorry you are going through this. Hope we can be a source of support for you and provide some tips that helped us :)
-Shell

[kerrtelli]

I understand some of what you are going through.
I started having symptoms in march 2011 and was diagnosed in October.
My last flare up was October and I am in a flare again now.

I too am declining quickly and have been on copaxone for a week and a half.
Luckily I am not allergic to solumedrol and will start another course tomorrow or Tuesday.

They say I am RRMS also.

I dnt think I am but only time can tell.  Thats the hardest part.  The waiting!

I hope you can find sme solace here knowing that you are not alone.
Among all of the feelings you will go through not feeling completely alone and misunderstood is at least something.

Call your doc Monday and take are of yourself.

Kerri

[Lulu54]

Welcome - I am so glady ou found us here and hopefully others with similar experiences will speak up. It gets quiet around here on the weekends so don't despair if you don't hear from anyone else for a while.

I am so, so sorry you have MS and all these side effects.  Solumedrol allergy?  That is horrible and I know there is one other treatment - Acthar - but it is very expensive.  If your insurance will cover it you might give it a try.

Each one of us have a different path with this MiSerable disease and it is impossible to compare my MS to your MS.  With as miserable as you are doing right now, you definitely need to be talking to your neurologist- hopefully it is an MS specialist and not just a general neuro - and discuss other therapy options.  Some people find that the first one they try doesn't do the job and have to try others before finding one that fits. If you are having the problems with depression and feel the Avonex is compounding that problem, you should also talk to your doctor about it.  The other interferons can cause depression but Copaxone does not have that side effect.  

Just like our MS is all different, how we respond to treatment is also individual.  Remissions and relapses can be short or long for people - it is quite possible that you have RRMS but have not seen a difference in your health, yet.

Hang in there - I hope you will come through often and share more.  

There are so many things going on with you right now, I really think the best thing you can do is call your doctor first thing Monday morning.

A big welcome and gentle hugs sent your way,
Lulu