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Posted: Wed Aug 04, 2004 4:11 pm Post subject: Another hello - this one from Limbo
Hi. Absalom here. Not diagnosed with anything after 1 1/2 years of one-sided numbness, tingling and occasional unsteadiness/limping following a mystery attack. I'm grateful to find this site, as with the summer heat I am worse in my symptoms (I feel like an old doorbell going off sometimes) and have decided that I need to deal with the facts, even though I don't know them all yet. I'm getting good care, I think, after some bad experiences with dismissal.
I appreciate your sharing your experiences and insights. Thanks for this site and your participation.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Wed Aug 04, 2004 5:09 pm Post subject:
Welcome Absalom. For those that have not seen it, he posted an *excellent* journal entry describing his situation in our "Journal" section... check it out here:
Posted: Wed Aug 04, 2004 7:41 pm Post subject: these go to eleven
Absalom,
I took a look at your journal. I think you should press your new neurologist for a spinal tap. One of the benefits of being male is that the risk of a dreaded spinal headache is remote. And the diagnostic value of the spinal tap is very high.
My first neurologist gave me the same line about how a spinal tap would probably be negative given how subtle my symptoms were. My second neurologist strongly encouraged me to have the spinal tap. She said it was a piece of the puzzle that you needed to have. She also said that the disease is going on all of the time, whether it manifests itself clinically or not. There is no time like the present for a spinal tap.
By the way, my test was positive, and I was promptly diagnosed and started treatment. The sooner you start treatment, the better, or at least so goes the conventional wisdom.
Posted: Wed Aug 04, 2004 9:41 pm Post subject: No escape?
Heya Absalom...is your nick from that movie "No Escape?" Jean Claude VanDamme? Or, however you spell that.
I just wanted to let you know that I'm also in limboland. I'm sorry that you are having such a frustrating time. It's not like we signed up for this, or asked for it...my memory isn't great, but I think I would have remembered that.
Anyway, I wanted to let you know that I started a Yahoo! group a few weeks ago for people like you and I...w/ MS signs and symptoms but no Dx. The name is "UNDiagnosed MS" and here is the link:
We've got some really cool people over there who know exactly what you are going through. Some are dx'ed with MS among other conditions and they offer really great advice. Anyway...just wanted to let you know that you're not alone.
If you're not already crazy, it seems like trying to find out what is wrong will make ya crazy!
Dave, I will press for the tap. I do not understand yet the nuances of "too soon" and all that, but your experience helps me see how this can work. I hope you're responding to treatment well. How long has it been?
DAna, thanks for the suggestion and I will check out the group - I think I'm past the crazy stage, which may be a sure sign I'm in the crazy stage. (The moniker isn't from the movie - which I'll have to watch now.)
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I'll send private messages just in case you don't return to this forum to see this post. Thanks again.
Posted: Thu Aug 05, 2004 4:16 pm Post subject: Diagnosed last October
I was diagnosed last October, and have been on Avonex since last November. So far, all has been quiet, though I still have some numbness and stiffness in my left arm from the first (?) attack. I think I am going to be stuck with that for the duration.
About seven years ago, I was diagnosed with an "inactive" retinopathy, which I am now mostly convinced was actually optic neuritis and MS. So I think that is when this all actually "started." I have had a few spells of mildly impaired vision since then.
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