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justfibrome

New member
Joined
Jun 2, 2014
Messages
7
Reason
DX FIBRO
Diagnosis
06/1996
Country
US
State
NC
New to group, not new to fibromyalgia, been Dxed for almost 20 years, I had several good years with mild problems, the about 5 yrs ago started having real bad dizzy spells, doc did MRI and have Lesions on my brain, went to Neuro doctor and after a year of test I lost count on the tubes of blood, EEG, ohh I don't even remember how many other test, was Dxed with MS, good doctor, bad office management, would usually end up waiting 2-4 hrs for appt. Anyway went to new Neuro and said thinks its just bad Fibro, went off my MS injections, and just can not get it together dizzy, hurt all over, fog.....I think I have done about all I can do.


Now my question, what all documentation should i make sure i have and how far back and just any information that will help me when I just can't do it anymore.....Which I really do not think it is going to be long.....hoping to hold on another year....

I will be 47 in Oct, live in NC... not sure if that will help....any information would be great.....:smile:
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Well, having all the tests you've had done in the last 5 years would be fine, or even 10 years! A good doctor will check all that, sadly not so easy to find a good doctor. So sorry to hear you are having a hard time getting an accurate diagnosis... I find it so odd you were already diagnosed with MS and now the doctor says it's just fibro. It's so odd!
 

justfibrome

New member
Joined
Jun 2, 2014
Messages
7
Reason
DX FIBRO
Diagnosis
06/1996
Country
US
State
NC
He said where the lesions are were not the right place more like just came with age....dont get me wrong I was upset and relieved ay the same time, just felt i was back at sqare one
 

kmpisces

Distinguished member
Joined
Jun 20, 2013
Messages
151
Diagnosis
00/0000
Country
US
State
PA
I would keep copies of any medical records you have. I would say, the farther back, the better. Be well documented about lab tests and results. Keep track of medicine and medical treatments.
 

justfibrome

New member
Joined
Jun 2, 2014
Messages
7
Reason
DX FIBRO
Diagnosis
06/1996
Country
US
State
NC
thanks, i am going to try to get as many medical records as i can....
 

gerald

Member
Joined
Jun 6, 2014
Messages
11
Reason
Other
Diagnosis
00/0000
Country
PH
State
benguet
I agree you should get all the medical records you have. I think it is important to have the most recent lab results so as to be the basis of your doctor. Also, you should document the symptoms you experience including the onset, the triggering factor, what alleviates it and what worsens it. That should be the basis of your doctor for your treatment.
 

Jettbear

Member
Joined
Nov 6, 2013
Messages
13
Diagnosis
03/1988
Country
US
State
NY
I had documentation from over 15 years when I went to apply for disability and got it the first time around. Also I had been seeing a therapist the whole time and still do, that may have helped as well. When I went to the SS office it took over 1.5 hours to give the guy all my info. I had a migraine that day and he could see it in my eyes. One thing he said was if I got denied to go down the very next day and "let them see your face". That is a benefit of applying in person rather than online. There were many times I told my dr. I couldn't continue to work anymore, he didn't listen much but when I turned 50 he said I was finished working so age does matter as the guy at SS said once you turn 50 it is easier to get because they feel it is harder to retrain someone at that age. Sorry you had to go through the back and forth with the drs. The good thing is you have that documentation and it will help. Good luck to you!
 

justfibrome

New member
Joined
Jun 2, 2014
Messages
7
Reason
DX FIBRO
Diagnosis
06/1996
Country
US
State
NC
Thanks for the input..... going to keep digging
 
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