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Neurology (Expert Forum)
Don't know what to do.....scared
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Don't know what to do.....scared
by kim, Aug 25, 1999 12:00AM
Hi again. I posted a couple of weeks ago under "Still no Idea".
A doctor from the forum suggested that I might have benign fasculations. My current diagnosis is possible Fibromyalgia. Symptoms started two years ago this Sept. with a burning sensation down the tops of my legs and around my belt-line, and then it spread around the entire body. The symptoms started right after I was treated with a drug for a yeast infection called Diflucan. Most say the Diflucan probably had nothing to do with it.
I'll just post symptoms again:
- Muscle burning/pain/soreness/twitching all over but mostly in legs, arms and back.
- Stinging/prickling/pin and needles sensations all over, head to toe - worse on the left side of my body. It's somewhat of an icy hot sensation also. Skin reddens easily.
- Recently sinus headaches and pressure, for about a month now
- All symptoms wax and wain.
I've been working-out steadily for since this past April, weights and cardio. I'm wondering if that may be aggrivating symptoms. I feel worse right before and during my period.
All tests to date have been normal over the past two years. Most major testing, MRI of brain and cervical spine, EMG, sensory tests, Lyme, Lupus, Rheumatoid Arthritis, complete allery work-up, CBCs and HIV were all done and all normal within the first 6-9 mos after symptoms started. Since then I just follow-up with my Rheumatologist to see how I'm feeling and do blood work every six months or so. So far blood work for the past year has been normal.
I'm just frustrated and concerned. I'm getting engaged soon and married next year. I just want to make sure I'm alright, but there dosen't seem to be any answers from any of the doctors I've seen. I just saw a story this past week on Montel Williams and that he had been misdiagnosed for 10 years and that he has MS.
Any idea what's wrong with me or where I should turn now? Thank you very much.
A doctor from the forum suggested that I might have benign fasculations. My current diagnosis is possible Fibromyalgia. Symptoms started two years ago this Sept. with a burning sensation down the tops of my legs and around my belt-line, and then it spread around the entire body. The symptoms started right after I was treated with a drug for a yeast infection called Diflucan. Most say the Diflucan probably had nothing to do with it.
I'll just post symptoms again:
- Muscle burning/pain/soreness/twitching all over but mostly in legs, arms and back.
- Stinging/prickling/pin and needles sensations all over, head to toe - worse on the left side of my body. It's somewhat of an icy hot sensation also. Skin reddens easily.
- Recently sinus headaches and pressure, for about a month now
- All symptoms wax and wain.
I've been working-out steadily for since this past April, weights and cardio. I'm wondering if that may be aggrivating symptoms. I feel worse right before and during my period.
All tests to date have been normal over the past two years. Most major testing, MRI of brain and cervical spine, EMG, sensory tests, Lyme, Lupus, Rheumatoid Arthritis, complete allery work-up, CBCs and HIV were all done and all normal within the first 6-9 mos after symptoms started. Since then I just follow-up with my Rheumatologist to see how I'm feeling and do blood work every six months or so. So far blood work for the past year has been normal.
I'm just frustrated and concerned. I'm getting engaged soon and married next year. I just want to make sure I'm alright, but there dosen't seem to be any answers from any of the doctors I've seen. I just saw a story this past week on Montel Williams and that he had been misdiagnosed for 10 years and that he has MS.
Any idea what's wrong with me or where I should turn now? Thank you very much.
Doctor's Answer
by CCF Neuro[P] MD, RPS, Mar 17, 2000 12:00AM
Dear Kim:
As the other doctor who posted the idea of benign fasciculations, I would agree. All your tests have been normal and it has been many months since the diflucan. A side effect of diflucan is a muscle problem but this should have resolved many months ago. It is doubtful that you have MS as there is no evidence by testing for the past two years. This would be very, very uncommon.
Sincerely,
CCF Neuro MD
As the other doctor who posted the idea of benign fasciculations, I would agree. All your tests have been normal and it has been many months since the diflucan. A side effect of diflucan is a muscle problem but this should have resolved many months ago. It is doubtful that you have MS as there is no evidence by testing for the past two years. This would be very, very uncommon.
Sincerely,
CCF Neuro MD
I so empathize with your frustrations. I read your message and I know what you are going through. I too have the muscle burning and soreness, but for me, it is strictly in my legs. I don't really have any of your other symptoms but I have had the MRI of brain and spine, EMG, Lyme tests, and so many blood tests I feel like a pin cushion. My doctors (which now include a cardio, neuro, rheumatologist and two GPs) have no idea what's wrong with me. I read everything I can on MS and I can't believe not one of my doctors have said "you have MS".
On the personal side, I also got engaged last year (my wedding is this October) and bought a house with all feelings of apprehension. I kept asking my fiance "Are you sure you want to do this? I could be in a wheelchair in six months!" Thank god I have a wonderful man whose response was "Then I will push you around for the rest of our lives."
I found keeping a journal to be helpful. I write in it everyday about what I eat, the weather, how my symptoms are that day and overall what I'm feeling. I find it helps in a way. It makes me realize that my symptoms are real and not "in my head."
I'm so sorry that I can't help you, but I wanted to let you know that there are many of us out here with problems that cannot be diagnosed, many of us who are frustrated that we cannot be helped, and many of us who pray for one another.
Good Luck and Good Health to you.
It's good that you don't have anything serious. I keep telling myself that every day. However, when things flare up a bit more than usual, I get nervous. Having good people in your life, like your finacee, helps a great deal. He sounds like a terrific guy!
Have any of your doctors mentioned Fibromyalgia to you as a possible answer to your problems? I'm a little skeptical with that syndrome because it just seems like something they label a condition when they can't figure out what it is! It's really hard to know who to trust. Have they given you any ideas as to what it may be? Do they have you on any meds? I was on Elavil (an antidepressant) for about a year at a low dose and stopped taking it. Didn't feel like it was doing much and I don't like the idea of being on an antidepressant.
All I can say to you is keep your spirits up and try to not keep it a focal point. I'm sure your wedding has been that anyway! Enjoy it and be happy!
Good luck with everything and I hope your health improves soon!
It's good that you don't have anything serious. I keep telling myself that every day. However, when things flare up a bit more than usual, I get nervous. Having good people in your life, like your finacee, helps a great deal. He sounds like a terrific guy!
Have any of your doctors mentioned Fibromyalgia to you as a possible answer to your problems? I'm a little skeptical with that syndrome because it just seems like something they label a condition when they can't figure out what it is! It's really hard to know who to trust. Have they given you any ideas as to what it may be? Do they have you on any meds? I was on Elavil (an antidepressant) for about a year at a low dose and stopped taking it. Didn't feel like it was doing much and I don't like the idea of being on an antidepressant.
All I can say to you is keep your spirits up and try to not keep it a focal point. I'm sure your wedding has been that anyway! Enjoy it and be happy!
Good luck with everything and I hope your health improves soon!
Yes they checked for Fibromyalgia. I don't have any of the "pressure points" so they ruled that out. A couple of doctors indicated it might be that I am recovering from a viral infection (the whole thing started out in January when I had flu-like symptoms) and I am just taking so long to recover. Woudn't it be wonderful if it was that simple?
I was on Celebrex for the soreness in my legs. It didn't really do a thing (but it did clear up the bursitis in my hip!)
I think after the wedding I might start all over again with the doctor bit, but for now i'm trying to ignore it.
I'll visit this site frequently in hopes that you have been helped and you feel better!!
Good Luck!!!
Physical therapy did nothing.
The only way I keep going every day is taking 4mg of Klonopin, Darvon-N 100mg (every 4-6 hours) and Tylenol #3 w/codeine (every 4-6 hours).
I still am searching for a diagnosis and have been to about 10 doctors and none seem to give a sh$t.
Good luck!!
God bless!
LG
Howard
CCF Neuro MD
Very interesting - I have the same symptoms (with muscle weakness) which started right after taking two rounds of Diflucan for a yeast infection. All of my tests (neurological and otherwise) have been negative, with the exception that we did find a herniated disk at c4-c5. Some doctors think this could cause most of my symptoms - others say no. I know the CCF Neuro MD says Diflucan not a likely cause but it's interesting to hear you mention it. I too questioned this and I'm still searching since December 1999. I am also getting married soon and concerned. Have you gotten any more answers?
Angela