Radio no mo'
 

I am a radio announcer and just had to give up a 15 year morning show due to neuropathy in my feet that is so bad most times, it feels like my feet are going to explode. I'm on 3600 mgs. of neurontyn daily.....and that doesn't help concentration when you're on the air. I had no choice but to step aside.
Right now I'm in a holding pattern. I also have 2 herniated disks with 'severe' foraminal narrowing above and below the C5-C6 that have already been fused.
I have an appointment for a consult with a neurosurgeon-----which of course----no matter what----will not help my feet one little bit.
My neuropathy is of 'unknown origins' so----since I don't know what caused it, they can't seem to help it either. I can only go for a little while before I have to elevate my feet above my heart.
My mother died at almost the same age I am now of "Sjogren's Syndrome'--a rare auto-immune disease. I've been to three neurologists-----all the way to Cleveland Clinic---and I'm thinking seriously about checking out everything with a rheumatologist because of my mother's history. Any ideas, suggestions, or flat out lies and tall tales are welcomed. I'm at my wit's end. For the first time in my life-----I'm not working.

Yes, you certainly should--
 

--get a good rheumatology consult, as there are many peripheral neuropathies that are autoimmune in origin. Be judicious, though--a lot of rheumies are only familiar with the ant-nuclear antibody (ANA) mediated collagen/connective tissue/vascular conditons (i.e, Sjogren's, lupus, polyarteritis nodosa, etc.) and not as familiar with atuoimmune conditions such as celiac or other conditions in which antibodiea re produced that are specific to peripheral nerve components:

http://neuromuscular.wustl.edu/antibody/pnimdem.html

http://neuromuscular.wustl.edu/antibody/pnimax.html

And that cervical spine consult is a good idea as well. One of the most annoying things about peripheral nerve symptoms is that they can be exactly mimicked by problems in the spinal cord or spinal nerve roots, even at the cervical level (which can affect any part of the body at or below that level, inclduing the legs/feet); the investigation into potential causes is often one of long investigation and process of elimination, if a direct cause is even findable.

Some docs have a tendency to want to pigeonhole a diagnoses right away and leave the case up to others. Be careful of too fast a snap judgment and get 2nd opinions on everything. You may not agree with what the doc Dx's and if you don't, don't let it stop there. It can be a long and tedious (and expensive) process.
Be aware of the pitfalls.

Do you have any symptoms in the hands?

When you describe your feet, feeling like exploding... is this because they are swollen (throbbing)? Hot? are they discolored or change colors during the day? Are they worse some days than others? Sharp pain or aching throbbing pain?
Neurontin can cause edema in the extremities making compression on nerves and pain worse!
Have you tried Lidoderm patches?

Autoimmune disease is less common in males than females.
But it does happen.

Have you taken drugs that are known causers of PN?
http://neurotalk.psychcentral.com/thread122889.html

Some things other than spinal damage/compressions, are long term with PN.

Hereditary issues...genetic testing is needed for this. Charcot Marie Tooth and its variants.

Dietary issues... intolerance to gluten, dairy, nightshade veggies are often culprits

Circulatory issues... peripheral artery disease, more common in males who smoke, but can occur in anyone.

Diabetes... often pre-diabetic conditions can begin this process before blood sugars become high. This is called impaired glucose tolerance.

So there are many avenues to consider. Think back to what was going on with you when this started... what were you doing then? What antibiotics or cholesterol drugs were you taking?
Other drugs from the list I gave the link to?
Chemical exposures, hobbies etc?
Did you fall and hurt your back then?
Did you have an case of food poisoning, or infection?

Nerves get damaged from many things. Sometimes the trigger is hard to pinpoint, and we need to be a detective of sorts!

Did the neurologist do mris,emg,complete bloodwork? Did they suggest you see a pain doctor at CC?
I a sorry you had to step down from your job. I hope you get answers and some relief

Hopkins has a study going regarding Sjogren's and hereditary relationships.
It is classed with Neuropathy.
Have you thought of switching to Lyrica?
I did. I was on 4200mgs/day neurontin.
Now I'm on 600mgs/day Lyrica.
Lyrica has less side effects at lower dosages to achieve results.

I know what it takes to do a radio show. Many years ago (1960's), I used to be the mid-week all-night (11pm to 6am), on-air man, and production director for a radio station in a resort town by the ocean. It was a year-round job, not seasonal.
Sorry you had to go off-air. Maybe if you can get your pain under control and have less side effects, you could go back to an on-air job.
I now work with power tools and drive a small truck while taking my meds-and have very little side effects and can handle my job well. Its all in the pain control, and tolerances for certain meds.
Hope you can get the help you need.