Neurologist?

Status
Not open for further replies.

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
I'm woundering if any of y'all that have been to neurologist have been tested for "small fiber neuropathy"? I was never prescribed a "neurologist" and just read an article that sounds promising. (But don't they all!?).

I insisted on a Brain MRI last summer so and had just asked my doctor for a neurologist refferal when the reumotolgist diagnosed me with fibro. It made scence so I quit looking for a diagnosis.
I'ld like to know ANY feed back on this one if u have any.
 

harpert

Active member
Joined
Feb 26, 2016
Messages
56
Reason
DX FIBRO
Diagnosis
07/2014
Country
USA
State
IN
I have been to a neurologist. I have normal pressure hydrocephalus so they do scans every other year to see if it is getting worse. I also have to have my eyes checked every year for pressure behind the eye. They have taken 34cc of spinal fluid out to see if that helped my gait problems and it did not. It all becomes "normal" after awhile.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
Thank you Harpert. I had to look normal pressure hydrocephalus up. It sounds dreadful and I'm so sorry you have to deal with that added to your pile. I think the only thing normal in my life is nothing stays the same long enough to become my "normal"!

Has your neurologist ever checked you for small fiber neuropathy? I'm so up to my eyeballs in medical bills I was going to get tested for toxic mold this month but my son needs an MRI so I'm not really keen on embarking on neorology testing to hit my high deductible again if I'm just chaising wind.
 

WarriorPrincess

Distinguished member
Joined
Mar 18, 2016
Messages
147
Reason
DX FIBRO
Diagnosis
05/2005
Country
US
State
TX
Most of my treatment has consisted of pain meds, anti-inflammatories, and muscle relaxers, since they would tend to help both the Fibromyalgia and also my other conditions, at least the back and neck issues. I have tried Lyrica and a few other medications, but haven't had lab work in years, so it's doubtful I've been tested for this. I'll have to look it up to see what it involves, and see if my symptoms fit in with the diagnosis. I wish it wasn't such a juggling act for so many of us between living expenses and medical treatment, because I'm sure having access to treatments and medications could improve quality of life for many of us. I'm interested to see how this goes, and if you receive the diagnosis once you're able to afford the tests.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
WP, you are so right about the medical cost and the quality of life correlation.
This condition requires a skin punch so we would know if we had it...ouch!!! But apparently a clinical trial revealed that half the people diagnosed with fibro actually had this and the change of meds helped them tremendously. Sooo
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
I feel for you guys having to worry so much about medical bills. I always thought insurance paid for whatever you needed but i guess like all insurance policies there are restrictions and limitations.

We are very lucky that we get pretty good medical care paid for through our national Insurance scheme and taxes from the day we start working.

Again there are limitations though...it wouldn't cover any tests considered outside of the norm...like toxic mould testing. I asked for a check on my cortisol levels once as i feel as if my body is permanently stuck in fight or flight mode...like an engine that is running even when i am asleep.

MY GP (PCP) said they don't do that...so here if you want to pursue anything you might read about you would have to try and find a clinic to do it and pay priavately.

It would be the same with an MRI a hospital consultant would have to deem it necessary...i still think we are lucky though...it must be such a worry if family member has a long term condition and need lots of medical care.

Sorry a bit off topic again! I start reading and then suddenly i'm typing away with my thoughts...that sometimes are leaning away from the original post.
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
We enjoy your thoughts, willow :)

Eyesup, I read that study too - it was very interesting. I missed the part about changing meds though.
 

harpert

Active member
Joined
Feb 26, 2016
Messages
56
Reason
DX FIBRO
Diagnosis
07/2014
Country
USA
State
IN
My neurologist saw in my MRI that I have hydrocephalus. He did not do any further testing. Today I had an added diagnosis of inflammatory arthritis and 2 new meds. just when you think you got it figured out something changes. Hang in there.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
Yes DK I think it's treated with immunoglobulin. Sounds better then lyrica or cymbalta!
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
Interesting...

I happen to be missing one of the immunoglobulins (IgA) due to genetics. Selective IgA deficiency is connected to a significantly higher risk for autoimmune diseases (for unknown reasons).

Now I'm curious which immunoglobulin they use for treatment.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
Interesting...

I happen to be missing one of the immunoglobulins (IgA) due to genetics. Selective IgA deficiency is connected to a significantly higher risk for autoimmune diseases (for unknown reasons).

Now I'm curious which immunoglobulin they use for treatment.

Hmmm, now I'm curious for you. I assume your doctor has checked your mucosal function also. And I assume if not you will let us know?
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
I have never heard of a test for mucosal function.

The way they diagnosed me was with blood tests. They did a baseline test (which showed I did not have any detectable IgA) then gave me a pneumonia vaccination to stimulate my immune system. A weeks later they did another blood test. All the other immunoglobulins increased, but I still had no detectable IgA. I've been tested several more times over the years, always the same result. It seems my body just doesn't know how to make IgA.
 
Status
Not open for further replies.
Top