Don't know what to do.....scared

[kim]

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.

[CCF Neuro[P] MD, RPS]

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

[Nicole M. LeJeune]

I am not a doctor, but I do know how it feels to keep going back and forth to one.  Congratulations on your engagement, and good luck pin pointing your illness.  :) Thanks Nicole

[Elizabeth]

Kim-

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.

[kim]

Thanks for your thoughts Elizabeth (actually we have something in common besides symptoms - my first name is Elizabeth too!  Kim is my middle name).

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!

[kim]

Thanks for your thoughts Elizabeth (actually we have something in common besides symptoms - my first name is Elizabeth too!  Kim is my middle name).

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!

[kim]

Thanks Nicole!  I hope whatever is ailing you goes away soon!  Good luck!

[Elizabeth]

Hi Kim -

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!!!

[chad]

I have the same problem, most of your symptoms with the biggest being the burning in the low to middle back and tingling/extreme tightness of the hamstrings and extremeties.
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!!

[L.G.]

I too experience your symptoms. It's very frustrating at times...I feel like a guinea pig  for the doctors. I have had all of your exams including a muscle biopsy back in December which had me out of work for 2 weeks...and they still  don't know what's wrong. However, I'm experiencing muscle autrophy all over and I'm really scared right now. I guess all we can do is pray...and stop reading medical books(smile) Everytime I read a different disease I'm like "I have that!!!"

God bless!

LG

[Elizabeth(II)Lillabet]

Hi, You sound like you might have fibromyalgia which includes somany symptoms like your symptoms!I have CFB with many other symptoms/dx to date!  The pain from FB is off the scale at times but is acceptable with limitations!  There is a website on Fibromyagia through the Fibroymalgia Network Website.  Much is discussed if you follow through with all the info., you might find symptoms the same as yours....I have been trying for 11 yrs to get a specific disorder for all what is happening to me; however, I receive maybe, could be, wait and see, need more symptoms, have you tried going to a phyc?  Yes, I have and that part is ok! So why the problem? I seem to be the type of person that has many symptoms but the docs can not put it al together...so be it! I can wait until the final bang! Keep trying, maybe you can find out what is happening to you! (E)

[Elizabeth]

How are you doing Kim?  Any new updates? I hope you are feeling better!!

[Howard]

Kim, It is a few Months since you asked but I was wondering if you got any answers since you last asked your doctors. I am having the same symptoms and they can not figure it out. Let me know

Howard

[CCF Neuro[P] MD, RPS]

Howard, I hope you got your answer.

CCF Neuro MD

[angela]

Dear Kim:

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

[CCF Neuro[P] MD, RPS]

Thank you for the comments.

CCF Neuro MD

[Dennis]

I got an infection in both my feet in july 1998.I was working in river water in a towboat cleaning a compartment.
   Since then I have been diagnosed with polyneuropathy. Sural nerve biopsy showed severe axonal damage. EMG, they said, was abnormal and confirmed a polyneuropathy. I am steadily getting worse. I experience burning , shocking , squeezing pain in my feet. Most all the time now, sometimes severe. It has really got worse in the last three months. I walk funny and I am very clumbsy. If I walk into the dark I get lost and will fall.
I can't tell where I'm at in the dark. This is very painfull and I am unable to work. If I walk very long at all it is almost unbearable.
I tried neurontin , elavil , pamelor , to no avail. Now I am on B12 shots. My b12 level was 240. I am taking 1000 units every other day for two weeks, once a week for two weeks , then once a month thereafter. I understand normals are 187 to 1087. true ?
   My labs on bloodwork the Dr. said, was all good. I am 39 years old, smoke 2 packs a day, drink a pot of coffee a day and was very active until this happened. Ain't had a drink in 15 years. Now i am so tired i don't want to do nothing . I also tremble if I stand for more than a few minutes. any ideas ?
Is there a possible connection to diesel fuel emissions(breathing exhaust ) I breathed a lot of it for 20 years.
any ideas would help. thanks.

[CCF Neuro[P] MD, RPS]

Dear Dennis:

I am not sure what the etiology of your polyneuropathy is and therefore I can't answer your question.  Your description sure sounds like you have a sensory and motor neuropathy.  There are many reasons for a person to develop a neuropathy.  Since the time has been so long that you have had this problem, I would venture to say the chance of improvement is pretty low.  I am sorry.

Sincerely,

CCF Neuro MD