newky diagnosed w/MS - haven't walked in 5 mos. IMPUT DESIRED - Multiple Sclerosis Message Board

marytee70 · 04-03-2006, 04:50 PM

Am brand new to this board. After about 6 months of symptoms and having been rold it was a back problem, I found out in mid-February I have MS. By then I had been effectively wheelchair-bound for about 5 months. Just spent 4 weeks in hospital, first 5 days on steroids (plus Avenox) and 3 weeks of physical therapy. I have begun walking very slightly with a walker and am generally improved with ability to stand up by pulling myself up and having to hang onto something. Am wondering whether anyone else has had similar situation and what their outcome was. I was told, and believe, that a great deal of my incapacitation was due to muscle weakness and non-use, some of course is MS. I am planning to continue physical therapy outpatient and I do exercises at home but would love to hear from people out there because I am very down and discouraged. Thank you in advance.

lestoby · 04-03-2006, 05:09 PM

Welcome Mary!

I have not been dx yet, but my first attack had me down and out (all of the same symptoms as you), only I was unfunctional for 5 weeks. Not 5 months.

I am so sorry you have had such an ordeal, but it sounds like you are gradually improving. That is the "funny" thing about MS and why they call it "relapse / remitting". One day you are doing OK and then wham.... you are out of it for weeks.

Have they told you what "form" of MS you have?

marytee70 · 04-03-2006, 05:20 PM

Thanks for replying, and good luck to you. No, I don't know what type. I had a horrible neurologist who didn't even have the decency to speak to me or see me to tell me my diagnosis - when I called his office to find our the results of my spinal tap (cause the MRI was only suggestive), he didn't speak to me. Instead, his nurse informed me on the phone that I have MS and said they would phone in a prescription for Avenox if I had someone who could give me the injection. Which I did. I then had an appointment with a MS specializing institute here in Buffalo and was admitted right away. New and more MRI's were done and I have another appointment in 2 weeks where I presume I will learn more. Thanks for your encouragement.

duttin · 04-03-2006, 05:44 PM

Welcome Mary,

Like Lestoby,first attack put me down for a while.Not 5 months.I had muscle weakness and atrophy.Physical therapy has helped.I don't have a diagnosis yet,only probable.
I had an aweful neurologist,I kicked him to the curb today and contacted the specialist he referred me to at The Cleveland Clinic.She's a Neuromuscular specialist,I explained to her about the way this DR was today and she scheduled VEP and a SSEP for tomorrow morning.That was quick.
I'm glad you got into a good facility,its really hard to do.

Prayers to you
Toni

marytee70 · 04-03-2006, 05:48 PM

Thank you, Toni' the same to you. I have only been home for 3 days and believe I will have to go into a sub-acute rehab facility, i.e., nursing home, since my daughter refuses to help me in any way even though she is living in this house. I know that stress and grief can make MS wose and I can't let that happen.