Seizure/Hospitalization/Diagnosis - Multiple Sclerosis Message Board

Deedle77 · 08-25-2007, 07:15 PM

I have been away for awhile - hospitalized for 5 days for the Solu-Medrol IV drip, but prior to that was new to this board (I had posted "Unusual Episodes" as a newby, which turned out to be partial seizures).

Along with the 2 seizures (which my neuro says only happens to about 5% of MS patients), I had gotten to the point where it was difficult to walk, I could not use my right hand or arm because it was so weak and I felt like I hurt everywhere. I've had cognitive issues for years, pain in my feet on and off, an MRI in 2005 that showed lesions, a new MRI last month that showed new lesions (yet they didn't seem to be active) and still no diagnosis until last week.

Finally my Neuro, who is an MS Specialist, sent me to Pasadena for an MRS (Magnetic Resonance Spectroscopy) after ruling everything else out, including Lupus, Lyme, RA and APS among other things. He concluded that I do indeed have MS, hospitalized me for 5 days with the Solu-Medrol IV therapy, ordered a lumbar puncture (for additional information) and had a physical therapist come in to help me to get my legs moving again. Boy, that steroid treatment worked wonders, but coming off of it was much more difficult than I ever expected!

I'm sharing my story because I know how frustrating it can be to feel so poorly for so long and not know what is going on. My neuro now says I have had this for years, but I guess it is just so difficult to diagnose without all the pieces of the puzzle fitting together. I have never felt so frustrated and discouraged, feeling like I am living half of a life with no answers as to why. I even had friends giving up on me because I got to the point where it was difficult to commit to anything socially when I wasn't sure how I was going to feel or if I was even going to be able to get out of bed.

Anyway, my advice is DON'T STOP PUSHING FOR ANSWERS. We know our bodies and we know when something is wrong! Find a doctor that will work aggressively with you for answers and if you don't have one that will, find one and get on the right track. I would have been in much better shape had I known what I was fighting years ago, though I am just grateful to finally know now so I can move forward.

Annie

MSNik · 08-25-2007, 07:53 PM

HI Annie. Just wanted to say thanks for giving out the good advice that you did. As someone who had NO PROBLEM getting a dx (mine came within a month of my first symptoms) I can only read about people who have gone thru Heck and high water trying to get a dx...and feel awful for their battle. Your story is one of hope, and I think we all need to read about that!

Sorry you went thru so much to get where you did. And, yes, steroids, IV can wreck havoc on you when you come off them. Next time, ask them about doing them at home. They have a home infusion nurse come to your house and administer it, alot more comfortable then being hosptialized for a 2 hour a day infusion! However, its important the first time to make sure you dont have any reactions to the steroids. Sounds like you didnt, thats great!

Continue to feel better, and share with us your progress now that you have a dx. Are you thinking meds? Thinking of starting any of the injectables? My drug is Rebif, which I think is really helping to stabilize me,but Ill get back to you on that in September. Ill have my yearly MRI this upcoming week, and a doctors appt to find out if Im doing as well as I think I am shortly afterwards..
I wish you well.
Nikki

Deedle77 · 08-25-2007, 08:58 PM

Hi Nikki,

After a lot of research and a long consultation with my neuro, I've pretty much decided to go with the daily Copaxone injections. I'm very sensitive to meds, so I'm hoping to tolerate it okay and get good results without many side effects. At this point, I am waiting to hear what my insurance will cover and get all this red tape ironed out so I can get started. After that, I understand a nurse will come out and assist me in getting up and running with the injections.

Please keep me posted on how you are doing with the Rebif.

All the best to you in the meantime!
Annie

KTMorra · 08-25-2007, 10:04 PM

Hi Annie

I remember when you first posted about your "unusual episodes" and I think I mentioned a similar thing that had been happening with the lower part of my body vs your upper part. I mentioned this to my Neuro at our last visit and he said that it was absolutely a possible seizure like activity and it is very rare to find it as a symptom in MS patients. Nothing about my Neuro history has been "text book" so he wasn't surprised when I mentioned it to him. He said that I have been keeping him on his toes for a long long time now LOL.

You are absolutely right about coming off steroids. It can be very difficult and I know I felt like something the cat drug in for about a week afterward. This was even with a tapered down dosage.

Only someone who has been going through what we have been could understand this next statement. "Congratulations on your finally getting a diagnosis" I know that I thought I was loosing my mind after so many tests and conflicting results. The day I got my diagnosis I remember crying my eyes out, not so much about being upset that I had MS but in relief that I finally had an answer and I wasn't going crazy. It's hard to fight an unknown opponent. At least now we know what we are up against and can move forward with treatment.

I started on Rebif but had to switch due to an allergic reaction. I switched to Copaxone 2 months ago and aside from a bee sting like sensation for about 5 minutes after the injection (I put a small ice pack over the site right after the injection) and an occasional swollen injection site I haven't had any side effects at all. The company that markets Copaxone has a wonderful help line and website. Everyone that I have spoken with has been very kind, patient and understanding.

Wishing you the best, please keep us posted as to how you are doing

Take Care
KT

Deedle77 · 08-26-2007, 11:08 AM

Thank you for sharing your experience, KT. I also feel like one of those in the small percentage that is going to have the uncommon symptom or reaction. It is comforting to hear that you haven't had any bad reactions with Copaxone!

Please keep me posted, okay?

Annie