Diagnosis getting closer...
I saw my neuro today for my 3-month appointment. We discussed my new and old symptoms. She said that clinically, I have MS, and she is so close to diagnosing it as MS, but she wants to wait until February for my next MRI to see if any changes have occurred since July. She put me on anti-depressents for depression and renewed my script for Restless Leg. She agreed that there may be a link with MS and RLS. Anyway, still in limbo, but getting closer to a dx. She said she has no other answers to my symptoms and non-specific lesions except "clinical" MS. What is the difference between "clinical" MS and "the other" MS???
Anyone else have a similar situation to mine? If so, or if not, please send comments as I feel alone. My hubby still does not know of this as he still has not accepted the "possibility" of MS.
Thanks for listening and commenting. Linda
hi Linda, just saw this and yes - i am also in your situation. For me, after my 4th MRI it's now called a clinically isolated syndrome. Since no changes on my MRI that's where it is right now. The docs were thorough in testing for other things - all else ruled out and because no new lesions and all else normal (minus VIT D and A levels being low) i'm in the land of limbo. It's a waiting "game" for sure, but hang in there. I've been told it can take years, but that's not every case and you just won't know until they take another look. Did you have spinal tap or what other testing did they do?
There is so much information and support here that's been a great help to me, so whenever you are feeling alone try to remember that you're not...any info you might need, i can at least tell you from my story what i've been going thru if that might help. It might help me too... Hope you have a beautiful day... Suz
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Suz
Wednesday, November 18, 2009 at 03:53 PM
Hi there..i understand about having lots of questions...From what i have learned - yes clinically isolated falls into the MS category.
"The term clinically isolated syndrome (CIS) has been used to describe a first neurologic episode that lasts at least 24 hours, and is caused by ...inflammation or demyelination of nerve tissue"
I don't know how to do a link, but there is an interview Merely Me did of Dr. Sethi, a neurolgist, on January 5, 2009. This is the link to the page it was on. If the "link" doesn't work here's the URL...
http://www.healthcentral.com/multiple-sclerosis/c/73302/54272/doctor/3
Also, if you type in words or questions in the search bar above you will find lots of info - questions, answers, and posts re: this topic ...
Re: medication - It seems there are varying opinions of when to start - There seems to be a greater opnion to start meds earlier rather than wait, but it's so different for everyone it's hard to say what your doctor might suggest. I am not knowlegable enough of them to discuss, but there is alot of info on this site if/when you get to that point and your doctor can tell you what he suggests too. I have been prescribed amandatine for energy, I take Vit D and A for those levels since they were extremely low and try to do what i can for myself and accept and be patient. I can deal with the double vision, I can deal with the balance - the hardest thing to deal with is the fatigue that is like a lightbulb and seems to have no rhyme or reason as to when it switches on and off.
I was also prescribed anti depressant - My insurance didn't cover what she prescripbed so only had 5 days of it. - and we didn't discuss it again last time. But there are many posts on here re: that subject and MS - I can find some links to that too if you'd like.
Hope this helps a bit - keep in touch
Suz
Thank you so much, Suz. Your words help me greatly. Besides lesions on the MRI, I had a negative spinal tap but will have another one in February along with another MRI. I've been tested for everything imaginable with no positive results, including Lime Disease. What does "clinically isolated" mean. Is that a kind of dx of MS? And if so, do I begin treatments to help the situation not to get any worse? So many questions. Thanks again for your reply. Linda