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783662 tn?1236362247

Today we got an answer!

So today was my followup with the Neuro and he diagnosed me with Fibromyalgia with MS symptoms and said that he could not diagnose MS because the MRI was normal. I also have Parasthesia and Memory Loss. So I do have an answer finally! I am relieved and I feel like this does leave the door open so that if in the future something shows up then it will help. What do you all think???

Also, should I continue to go to the MS group here? He wants me to followup with my Rheumy for a possible change in meds. He mentioned depression because he said people do not understand Fibro and often think it isn't real and I immediately jumped forward and said I am not depressed and people will understand this! I don't do stereotypes so let's not go there. My husband said he was going to drive home the not being depressed but I said it enough! LOL I felt the need to make a point and be heard finally!

I'm just curious what you all think now? I'd love to hear your feedback about this. I go to the Rheumy on May 1st.

~taking it one day at a time~
7 Responses
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230948 tn?1235844329
uk2
Hi

I was dx in 2008 by a private dr as the NHS did not know what i had.

I do have a good rheumy who says it is a central nervous condition and can be very disbilating as for saying you have MS sx thas abit odd but at least he belives in it as my neuro does not!! and the NHS just palmed me off to a pain clinic who then said all my problems were neuro based and they could not help me and go to a neuro circles!!

I was o.k with it for abit but then i got so bad registered disabled and after 3 drs telling me this conditon cant get that bad so i  must have been wrongly dx i am going through the system again to see if they were right.There really is not much out there i have not tried for fibro and nothing works, so i am not sure who is right!!

anyway good luck, did the neuro do the tender test on you?? they wont do much once they see you i see mine once a yr saw him alot at first privatly but once i moved to the NHS i only see him once a yr and the drugs they give me dont work.

PM e when you want and keep in touch and us informed.

godd luck

sam
Helpful - 0
Avatar universal
Aloha!

You know what troubles me is that Dr's say they can't diagnose you because the MRI doesn't prove it. I am really tired of that, took them 4 years. I have lesions but they aren't active and they are in the typical positions. Last Dec I requested another evoke testing in my hands and legs. They found abnormal delays in all extremities. Finally the Dr told me TODAY that I have MS only because I'm applying for life ins.. Something is wrong with Dr's if they feel they only can base their descisions on a mri. Sorry I am a bit bitter because the Dr should have called me after months of the results, not me calling him to ask a question.

MM
Helpful - 0
152264 tn?1280354657
Are rheumatologists still treating fibromyalgia? I thought they were trying to wash their hands of it, because it's no longer considered a rheumatic condition--it's a central nervous system condition with "central sensitization" to pain.

Of course, if rheumatologists wash their hands of it because it's a CNS condition, do you think neurologists are going to jump in and follow fibro patients? Somehow I doubt it!!

Family doctors are going to be left as the "fibro specialists," to the extent they aren't already, because nooobody else wants these patients. At least that's my guess.

But in any case, it's good that you got a diagnosis that you feel makes sense. My mother has pretty classic (and severe) fibro, and I just read that it runs in families, which makes sense, because her father apparently had bouts of it, my brother's feet hurt all the time, and I ache all the time too (though I don't have tender points or sleep disturbance).

I did see a rheumatologist a couple of years ago after almost two decades of achiness. He did no blood tests, a very limited exam, didn't listen, and strongly suggested I had fibromyalgia (he said you do not need tender points to have fibro). And he also made it clear he didn't need to see me again. So, I think rheumatologists are getting out of the fibromyalgia business!

Good luck to you--I hope you never get MS. There is a lot you can do to ameliorate fibromyalgia. Most importantly, get plenty of good sleep and balance activity with rest.

Nancy
Helpful - 0
293157 tn?1285873439
Hi there... I'm glad you got some answers...when do you see your Rheum and what does or will he/she think of this Dx?  Let us know if he agrees with this...and I agree that it's a door left open incase you need further testing...

I'm so happy you have answers.... keep us update on how things go...and of course you are apart of our family here...

take care
wobbly
undx
Helpful - 0
198419 tn?1360242356
Hi ONeday,

We've not met, so hello and welcome.  I'm glad this Dr. dx'd you and I pray the medication works for you and that you get the relief you need.

You do not have to leave us.  We have many here w/different dx's, it's what makes us such a diverse group and it also contributes to our variety of experiences and education.

Will you continue to see him?

See you around soon,
Shell
Helpful - 0
Avatar universal
Fibro is definitly real. I have had it for at least 25 years. Before it was adknowledged by many drs. In fact my internist told me it was "all in my head" Fibro has many of the same sx as MS, including "brain fog", and sx of depression. For some reason anti-depressants do help with the nerve pain of fibro. Doesn't mean you are depressed. They don't really know why it helps, but it does. A good Rheumy is a priority with fibro. Feel free to pm me if I can help you in any way. I came to this website thinking that something had been missed after feeling *****y for years. After seeing Quix's neuro, and getting reassured it is fibro (and he was not in the least ego-minded) I feel certain the fibro diagnosis, among other things I have, is correct. Now they won't let me leave! LOL

Gentle hugs
Maggie
Helpful - 0
648910 tn?1290663083
I am glad you feel you have found your answer :o) and don't you dare go away.  Once you belong to a family you are always part of that family.

terry
Helpful - 0
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