Advice on antibiotics while in diagnostic limbo

Tell us what you are using to treat your MS-- and how you are doing.

Advice on antibiotics while in diagnostic limbo

Postby Daunted » Mon Oct 18, 2004 2:05 pm

I just saw an MS specialist, a nationally renowned one at that, and he came to the conclusion that I do not have MS. He said I probably have an unknown inflammatory condition of the CNS and/or peripheral nerves. He also mentioned fibromyalgia as a possibility.

I am greatly relieved but at the same time I am a bit confused since I had positive visually evoked potentials...which I believe are not caused by inflammation, but demyelination. He pretty much blew them off because my LP and MRI were normal.

I am wondering about seronegative Lyme...or maybe fibromyalgia. I'm assuming this doctor is correct (I will have a follow-up MRI) but it has also crossed my mind that it could still be early MS. But I'm trying to trust him, also.

I don't have a cluster of symptoms consistent with the "typical" presentation of ANY of these diseases, so no matter what I have, it's an unusual case. (Severe leg weakness, numb face, urinary urgency, eye pain, headaches, sensitivity to sound/light, parathesias, but normal neurological exam).

My follow-up MRI is early next year.

Here's my crazy question:

Given my situation, under what circumstances would any of you undergo antibiotic treatment as described by "Anecdote" and Dr. Wheldon?
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Postby mscaregiver » Mon Oct 18, 2004 9:45 pm

Hi Daunted, So sorry to hear about your situation, I am sure it is frustrating, even as this neuro is a well known and most likely a knowledgable doctor, it seems he is saying" You have something but I am not sure what you have ", (unknown inflammatory condition)

Perhaps a second opinion if possible?

Concerning your question about a antibiotic treatment regime, as your exact diagnosis is so vague right now, perhaps trying to get a more specific diagnosis first would be the right choice? I understand all that is involved in doing this and what one must go threw trying to get a solid reference to your situation, It is a tough place to be in..

Best of luck and sorry I cant be of more help, hang in there and keep smiling, and hopefully soon you will be able to get this rectified.

Philip
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Postby Scaggs » Tue Oct 19, 2004 4:14 am

Daunted,

I have exactly the same symptoms as you, and my recent MS tests are all negative as well. So, airing on the side of caution, that I may possibly have early MS, I decided to try the antibiotic regimen. I have been on it now for three weeks, and I actually feel a lot better. So much so, I even went to the Gym for the first time in 4 months!

I am not 100%, and I still have residual symptoms but it's early days. My advice would be to try, say a 2 month trial of Doxycycline, and if you get any benefit then consider the full regimen as proposed by David.

Scaggs
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Postby Daunted » Wed Oct 20, 2004 11:31 am

Thanks for the responses. The MS clinic evaluation was my *3rd* opinion by a neurologist, and the 5th or 6th doctor I have seen overall.

I seem to have leveled off quite a bit so I'm going to do a wait-and-see until I have another MRI, I think. But I'm going to keep perusing these boards and forums so I know if anything interesting happens in the meantime.

Thanks again.
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Postby OddDuck » Wed Oct 20, 2004 1:56 pm

Ok....I gotta respond to this one.

Fibromyalgia is no laughing matter disease in and of itself. It actually affects MORE parts of your body than MS. The awful part about MS, though, is that it is (or can be) disabling, whereas fibro is not. BUT fibro mimics MS almost to a "t" with some additional symptoms on top. Some people even get so spastic and deal with other unrelenting symptoms as to require assistive devices such as canes and wheelchairs, etc.

It certainly is NOT any less difficult to deal with symptomatically.

Here's a good website about Fibro: http://www.fmpartnership.org/engmonog.htm

Fibro seems to be due to a dysfunction in the HPA axis, (which isn't any laughing matter), i.e. the hypothalamic-pituitary-adrenal axis, and also the sympathetic nervous system, AND the autonomic nervous system, in ADDITION to the central nervous system. It affects just about everywhere.

And Fibro is also very difficult to treat and keep under control.

So, don't feel as if your doctor is trying to diagnose you with some disease that is "all in your head" or something. THAT is an old wives' tale. Remember, they used to say the very same thing about MS as they did Fibro.

Now they have found they were wrong about BOTH diseases!

Besides, most of the symptomatic treatments for both MS and Fibro are the same.

Hang in there! Fibro is no fun.

Deb

EDIT: Bottom line being.......Fibromyalgia IS a specific disease and a specific diagnosis.

SECOND EDIT: Oh, and Fibro is not known to be associated directly with inflammation. (Sorry, one of the responses you received seemed to be implying that they were telling you it was "all in your head", and it isn't. They used to tell MSers the same thing, and I hate hearing that in response to anyone's medical condition. Again, fibro is not a fun disease nor is it an "all in your head" disease.)
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Postby Daunted » Wed Oct 20, 2004 5:04 pm

Odduck,

Thanks- but I never thought that the doctor thought it was all in my head, just that I might end up diagnosed with that eventually rather than MS. Which would be all right with me, as FMS is generally not progressive as is MS.

I've been reading up on it a lot and I really don't meet the criteria in a lot of ways- it would have to be a weird, somewhat mild case. I have very little in the way of pain. I guess that's okay with me.

But what I've read doesn't exactly match up with what you're telling me as far as FMS- it isn't even a disease, it's a syndrome. It's not very specific at all- because it's purely a diagnosis of exclusion combined with these 'tender points' that I don't have- unlike MS for which MRI renders objective findings. So I really don't know what to think except that it's pretty clear that they don't know what causes fibro- lots of theories but even fewer facts than MS...

So anyway: Bottom line, he suggested I keep an eye on my symptoms with fibro in mind- because nerve inflammation and fibro can look mighty similar. But I'm closer to meeting the criteria for MS (positive VEPs) than Fibro, as I really don't meet any of those objective criteria at all.

Bottom line- I wil keep an eye on my symptoms with fibro in mind, but it's a little premature to be talking about it this much as I'm not even close to having such a diagnosis.
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Postby OddDuck » Wed Oct 20, 2004 7:34 pm

Yea, I wasn't referring to what your doctor said. I was referring to someone else (maybe I read the implication incorrectly).

Well, you'd have to read that link I provided pretty closely. It explains the details of fibro. Fibro isn't that vague, nor do you have to have all of those pressure points. They found out that wasn't the whole truth. And until just pretty recently, MS was called a syndrome also, so that doesn't mean a whole lot.

I've known some people to say they have been diagnosed with both. Fibro AND MS. (I'm one of them. HAH!) Or maybe I could just choose one or the other. I guess I could flip a coin, huh? Doesn't matter. The meds I'm on are good for both anyway, and other than just waiting for time to pass and "see", I guess we won't know for sure and may never know.

Well, that's good. Hang in there! I wish you all the best.

Deb
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