re: MS diagnosis

By manicbeatz Friday, November 16, 2007

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I have read many entries of MS sufferers who had a hard time getting doctors to listen. My family doctor is trying to get help for me. He is suspecting MS. I have classic symptoms but MRIs have shown clear. evoked potential test was read by an ENT and I was told 'You're abnormal but I don't know why."

My neurologist didn't even except the report from my rhuematologist that I had fibromyalgia. I am already on disability and I have been told I can NOT change neurologists unless I have not seen one for "so many years". I am in a PFFS group that has said otherwise. I can't even get to change doctors (neuro) much less get my symptoms heard. I am so discouraged. I do NOT want to HAVE MS mind you, but if I do have it I want to find out soon to start treatment. As far as I know I have no familiar MS but do have lupus and fibromyalgia in the family. I am at my wits end. I have an appointment with the SAME neuro on the 21st. I pray this time he will listen to me rather than say what he's said in the past-"Don't get weird on me". The only test I have not had is the spinal tap Unsure . I don't relish that idea but if it is necessary I will endure it. No one can say I am pain-med seeking because my family doctor is managing that (somewhat).

I guess my question is does anyone have any suggestions that may help me toward getting a diagnosis for symptoms that are NOT fibro related?

Believe Me Or Not

Comments (7) | Add comment

bzmomkfor

11/16/07 5:32pm

I am in a similar boat. I have fm & cf & bursitis. but i am having a laundry list of other bizzarre symptoms right now. I feel like the doctors think I'm crazy & don't listen or just chalk it up to FM etc. It is hard when you have a "catch-all" disease to get "professionals" to realize you may also have something else too. Good luck & prayers for both of us I guess.

manicbeatz

11/17/07 12:54am

May God be with you in your "doctor-go-round". It is bizzare and frustrating to have a doctor either dismiss you as a hypochondriac or blame everything on your diagnosed problems. I'm not crazy and I know you are not either. God help us find a doctor who is knowledgable and open-minded who will treat patients the way we should be treated--with respect. Keep me informed. Until then God bless and stay positive. (well as positive as possible in the situation we are in). Manicbeatz

Betty Boop Too

11/17/07 2:32am

Manicbeatz:

We're happy you've come to visit with us and hope that we can be of some help and at least help support you in your journey.

Your about the fourth person with FM/ possible Lupus that has also symptoms of MS and their doctors are suspicious. I even went through a time of testing myself that it was suspicioned and ruled out that I had MS too.

How long have you been fighting this?

Have you had a diagnosis of any chronic pain disorder or illness?

You must be so frightened, going through such a time of not knowing for sure. I don't understand why you were told not to weird out, I think being some what worried and afraid is a very normal reaction to not knowing what is going on with your health.

I am really thankful that you've come here and I hope we can help support you.

You have an apt on Tuesday and I hope maybe you can find some answers to your questions.

Please keep in touch and share your worries and concerns, we'll do our best to try and help you find the treatment that you deserve.

God Bless

Betty

manicbeatz

11/17/07 3:09am

Betty,

Thank you for your concern over my bumpy road to an answer. to answer your qyuestion,yes I have been diagnosed with fibromyalgia and osteoarthritis in all cervical bones and in my lumbar region. I also am bipolar. I feel that many times some doctors look at that and stop looking further. I have my bipolar diorder under control with meds and therapy. I am not crazy. I have symptoms that can not be attributed to either fibro or osteo. My primary doctor suspects MS but MrIs have shown no lesions. to date no specialists has pursued it further when a test comes back "normal". I STILL have the symptoms. I is SO frustrating and scary. If I DO have MS i would like it to be diagnosed soon enough to where I may not end up wheelchair bound. I do not want to hear I have MS but if i do have it buring my head in the sand can prove very detramental to my health. For this reason I continue to go the "doctor-go-round" route and pray someone finds some answers to why i have the symptoms I hjave. I would state them but they are so numerous and come and go. It's most aggravating to be in limbo nevver knowing when my arms will hold a glass, my legs will allow me to walk without falling just to name two.

Again thank you for welcoming me and for your concern. My prayers are with you . Susan

Betty Boop Too

11/17/07 9:42pm

Manicbeatz

When I was roaming from one specialist to another and feeling as though everyone kept passing me on to the next guy. I was seriously worried and concerned and absolutely did not want to have any chronic illness, but I felt like If I do have some serious illness, I want to find out as soon as possible so we can face this and get going on treatment.

It's so frustrating the way the medical system goes, no body is in a real hurry, they take their time, when all the while, the rest of us are wanting and trying to get some normalcy back in our lives, but we really can't, as we don't have any idea what is coming next.

It took me a really long time to learn to except that and also to trust in God, that I was right where he has led me. And then it was my job to surrender it all to him and trust that it would work out. I'm still working through that trust and I certainly have my own majority of failures, but I'm going to stay with him and see what comes from it.

Thank you for the prayers, I'll do the same for you.

Please come around and visit as often as your feeling up to it. I'll be here waiting

Betty

PS; Please let us know if you find out anything new on your tests, so we can help support you!

manicbeatz

11/18/07 11:48am

Amen Betty. f not for my faith in God I would have never made it through this maze they call "getting to the bottom of "it". " I too have tried to turn it over but still struggle with my humanity.

Betty Boop Too

11/18/07 6:02pm

Manicbeatz

It took quite some time for me to reach out and grab my cross, but I finally have and all things are wonderful in his time.

I hope your having a wonderful restful Sunday, so you can be ready for your week ahead.

Betty

re: MS diagnosis

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