Renae..How was your appt?? I've been thinking about ya' :)

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Renae..How was your appt?? I've been thinking about ya' :)

Postby reneeintx on August 21st, 2003, 10:49 am

How was your appt with the neuro? I was thinking about you...you haven't posted back yet.


Renee :)
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Sorry I haven't posted in so long...

Postby Renae on September 5th, 2003, 3:22 pm

Hi Renee-

Thanks so much for your concern! I'm sorry I didn't reply sooner. I was on vacation and then got back to work and its a zoo here! It's that time of year, I guess!

Anyway, my appt. was okay. The neurologist wanted me to have another MRI to rule out MS. I don't know if he was just doing this because he knows I'm worried about MS or what? So, that freaked me out a bit. But, then I went from that appt. to the rheumatologist and he had done a lot of sophisticated blood work and for the second time my ANA levels came back elevated. He thinks I have a "non specific" autoimmune disorder and said that if the MRI was negative, to start taking this medication which should help the symptoms quite a bit. He doesn't think I have Lupus because of all the blood tests that he's done, but apparently he had suspected that before based on all the muscle and joint aches and fatigue...that's why he did all this extensive blood work. So, I had the MRI and there was no change. Whew! Now I'm taking the medication and I don't really know what to think at this point! Supposedly it takes a good 2 months to see any results with the medication, so we'll see! I'm just kind of hoping for the best, I guess! I've had so many tests and seen so many doctors and this is the only test that has come back "abnormal". Also, the neurologist said he doesn't think I have BFS because if I did, I'd be twitching way more than I am. But, based on what I've read here that doesn't necessarily mean anything. There are people who twitch thousands a day and some nowhere near that much. Anyway, he may be right that I don't have BFS, but I don't know if his reason is necessarily correct. It's all such a mystery to me!! I don't know what to think anymore!

Anyway, thanks so much for checking in on me! You're so nice for doing that! I hope you're doing well!

Take care...
Renae :)
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Postby kim on September 5th, 2003, 3:38 pm

Renea,

If you don't mind me asking, what medication are you taking? And what's it's function? My ANA is elevated too, and they aren't sure why. I have not seen a Rheumy, but am thinking about it.

Kim

By the way, my twitching has been very low in numbers for months. They were very frequent in the beginning (like thousands a day) After Anti-depressants they greatly reduced. And recently, I think I'm only getting 0-10 a day!!!
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Postby reneeintx on September 6th, 2003, 12:40 pm

Whew~~~

I was worried about you! I kept thinking, oh no something went wrong and she won't come back. I'm glad you're back :)

I bet it was nice to relax on vacation after you appt. It's always a relief to get them over with.

I hope the med's work for you. I don't have muscle or joint aches, but I can imagine how frustrating it would be. You seem to have a good doctor that keeps searching for answers, which is great.

I never had any extensive blood tests done. I wonder what mine would show?? I'm afraid to ask my doctor, because she(gp) and he(neuro) already know I'm a hypochondriac :( and wouldn't take
take me seriously anyway. The reason I would like to do this kind of test is back 16 years ago when I was pregnant I had a mysterious low grade fever, that made me feel like crap. I also felt like my skin was burning hot. After I gave birth this crazy thing went away.

Since then, about once a year this mysterious illness comes back. I'll get a fever of 99.2 and it will stay for up to a month, along with the burning skin, and fatigue. Basically I feel like sleeping all the time. I've never told the doctors about this. I'm afraid too.

I don't know what to think, but I'd like to have a blood test while this is happening. Maybe it would show something. I know some people might say 99.2 isn't really a fever, but when my normal temp is 98.4, it is to me.

Anyways, I'm glad you're back and your doc is searching for answers.

I hope the "zoo" is under control!! ;)

Renee
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name of the medication

Postby Renae on September 8th, 2003, 9:44 am

Hi Kim-

The medication is Plaquenil. It's actually used to treat autoimmune disorders like rheumatoid arthritis or lupus and I guess the "non specific" ones, too.

I know others have posted here about having elevated ANA levels, so I'm not sure what the connection is there. I wish I knew more about all of this stuff...it's so frustrating!

That's good that your twitching is much less than before. Mine is too, but now its all the other symptoms that are driving me crazy!

Take care!
Renae :)
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Postby garym on September 8th, 2003, 10:02 am

Renae,

How/when did you symptoms first start? The reason I ask is because I suffer from a bunch of muscle/joint pain and it's driving me crazy. I have a 13 month old that I can no longer pick up because my shoulders ache afterwards. I could do that 1 month ago without any problems. I had an emg that the dr. said ruled out als, which is great...but doesn't make my other symptoms any better.

Finally, i have to ask if you ever took any of the antibiotics like cipro, levaquin, floxin or one of the other quinolones? I highly suspect that cipro started all this with me. I know people are probably getting tired of me asking the same question, but the quest for knowledge is never ending.

Good luck to you!
Gary
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hi renee

Postby Renae on September 8th, 2003, 11:18 am

Hi Renee-

Thanks for your reply. I'm sorry I had you worried that something bad had happened!

Yes, I hope the medication works too! I'm so sick of feeling like crap all the time!! I'm sure you can relate!

That's weird that you get that low grade fever thing every once in a while...you should definitely mention it to your doctor. It couldn't hurt, that's for sure!

Well, you take care of yourself out there and keep in touch! I'll keep you posted, too!! Thanks again for your concern!

Take care,
Renae :)
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Hi Gary

Postby Renae on September 8th, 2003, 11:58 am

Hi Gary-

I'm sorry to hear that you've been suffering with muscle/joint pain, too! My symptoms actually started over a year ago...last July. It all started with a bad episode of vertigo and then I started twitching, getting pins & needles and that kind of thing. The twitching has gotten better over time and I don't know why exactly...I am now taking Klonopin (which may be part of the reason its better). But then, a few months into it I started getting muscle aches and pains that seem to migrate. For a while my leg was really bothering me....to the point where I was in physical therapy and it still bothers me sometimes, but not as much. Lately, its been my wrists. I just generally never feel well and I'm very easily fatigued. I wouldn't say I can't do physical things, but I feel like when I do certain things ( if I overdo it), I regret it the next day. I don't know if this makes any sense. Its as though I have to be a lot more gentle to my body or something. So, I've been trying to do the exercises that the physical therapist has given me and walk because those are both pretty low impact things to do.

I don't recall being on any of those antibiotics that you spoke of...I did have a bad cold and sinus thing right before all of this happened, but I think I was just taking Claritin because my doctor thought it was allergies. I should ask my doctor, though, just to be sure because I really don't remember. After the vertigo...about a month later...I did take Flonase. Is that in the same category??

Well, I'm glad your emg was good. That's always a relief, but I know what you mean...that doesn't make your symptoms go away. I hear ya there...I've had so many tests and should feel so "reassured", but when you physically feel like crap...its hard to think that way.

Good luck to you!! I hope you're feeling better soon!
Renae :)
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Postby Greata on September 19th, 2003, 9:43 am

I am new to this group and have beem twitching for 7 weeks or so. I also have shoulder and right arm pain. The neuro. checked me out a month ago and found nothing wrong. He is not sure why I twich, my guess is that it is BFS. My EMG was normal, strength etc.. I am wondering if any of you experience increased twitching after exercise?{ I tend to over do it 4 or 5 days a week, like 2 hours a day..it helps keep me sane.} What helps this condition? Are there certain vitamins or minerals thought to be deficient? It is all so new and so very annoying. Everyone thinks I have made this up.

Thanks for any help.

Greata :?:
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