finding a good doc . . . HOW?
 

I'll make my story as brief as I can:

I have had symptoms with both feet for a year now. A doctor did nerve conduction and EMG and said I had tarsal tunnel syndrome. Report is below. After seeing four different doctors (2 pods, 1 GP, 1 neuro) and a physical therapist - no one else believes I have it for reasons unknown to me (maybe mental health discrimination - since I am bi-polar).

I watched the DVD from NeuropathySupportNetwork.org and stopped after just 15 minutes. Gene Richardson was telling 'my' story in the sense of doctors that don't care or listen. I will watch the rest of the DVD soon.

How can I get the treatment I need? My own brother is a GP but we are 2.5 hours away from each other. He said, "I can't believe this! It is OBVIOUS you have nerve damage (cold, numb feet, clumsey feet) and they have the tests right in front of them and they still don't know what it is or what to do!"

Again, where do I turn to next? I just got done calling the doc that did the nerve tests. He does not treat it.

Below is his test results. I have had these same symptoms for a year now.

Please advise on what I should/could do.

I teach PE so I am on my feet all day at work. I have three daughters ages 7,9 and 11. They don't need a disabled Dad . . . especially when things could have got treated early on.

Thank you, *edited*

Thank you very much for your time and consideration. Both myself and my MD brother are at a loss as far as what to do next . . . to start getting the PROPER treatment so I can get better (or at least not get worse).

Dean

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ^^^^^^^^^^^^^^^

Test Date: 3/31/14

Chief Complaint: Patient is a 49 year old male who presents with bilateral foot tingling, numbness and gait abnormalities. Today’s electro diagnostic study is individually designed to evaluate for an etiology of this patient’s clinical symptoms and signs. Differential diagnoses include the following: tarsal tunnel syndrome, lumbosacral radiculopathy, peroneal neuropathy, tibial neuropathy, sciatic neuropathy, other focal neuropathy.

SUMMARY OF FINDINGS:
Lower extremity nerve conduction study revealed normal and symmetrical distal latencies, amplitudes, and conduction velocities for the bilateral tibial motor, peroneal motor, superficial peroneal sensory, and sural nerves.

Bilateral planter motor nerves were studied to evaluate for tarsal tunnel syndrome. The bilateral planter nerves demonstrated significant slowing through the tarsal tunnel when compared to the medial planter nerves (> 1 ms latency difference). (bold in the original)

Bilateral peroneal and tibial F-wave latencies were prolonged. (bold in the original)

Bilateral H-reflexes were prolonged. (bold in the original)

Monopolar needle EMG was performed in selected muscles of the bilateral lower extremities, innervated by L2-S2 nerve roots. All muscles tested were normal. No spontaneous activity was seen in any muscles tested in the form of fibrillations, positive sharp waves or fasciculations. Voluntary motor units were recruited normally and with normal configurations and morphologies. (bold is mine)

IMPRESSION:

The above electrodiagnostic study reveals evidence of bilateral tarsal tunnel syndrome. (bold in the original)

Otherwise, normal electrodiagnostic study, except for prolonged F-wave latencies and H-reflexes. (bold is mine) These abnormalities suggest proximal nerve conduction delay from compression of the myelin sheath, such as might be seen in bilateral L5S1 radiculopathy. (bold in the original) However, these abnormalities are not diagnostic in and of themselves. There are no needle EMG abnormalities to suggest axon loss and support a diagnosis of radiculopathy. Without other supportive abnormalities, the significance of these abnormalities is unknown.

*edited*

Welcome to Neurotalk.
 

The real question is--where are you located?

We might be able to give you some idea of good places to go for further evaluation/testing and possible treatment if you let us know; there are specific medical centers and facilities that specialize in neuropathy.

Your nerve conduction studies and EMG are consistent with possible tarsal tunnel syndrome, but they are also consistent with a more systemic sensory neuropathy with distal "die back", meaning the longer nerve fibers, farther from the center of the body, are affected first. Have you had other work-ups for more systemic causes? Imaging of the lumbar spine area (which, given that you teach PE, makes me suspicious that you may have issues in that area)?

Not only should you visit our neuropathy forum here--lots of good information and advice:

http://neurotalk.psychcentral.com/forum20.html

You should also compare the work-up you have had so far with these listings. Neural symptoms form peripheral problems can be exactly mimicked by those of the spinal cord or nerve roots, so teasing out a cause is often long, costly, and very much process of elimination:

www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

how can i find a good doc? TTS
 

I tried to submit. I got an error message. It stated, "The message you have entered is too short. Please lengthen your message to at least 10 characters." My thoughts are inserted below (edit – I stopped with that method).

I guess the program does not like it when one does that. Suggestions for further posts to avoid this problem? Thanks.

Attempt to post number two: Now I got this message:
To be able to post links or images your post count must be 10 or greater. You currently have 1 posts.
Please remove links from your message, then you will be able to submit your post.

I live in Junction City, Kansas. A small town of about 30k with horrible healthcare. However, I'm only 2 hours from larger cities - KC area/Wichita/Topeka, etc.

The people that I have seen 'specialize in', 'there is nothing we can do. There is nothing wrong with you. Bilateral TTS is rare' ('BULL!' says Dean and his MD brother) . . .therefore, you don't have it."

"So . . . what do I have then?"

"Don't know . . . sorry. I cannot help you."

Inexcusable. At least refer me to someone who can.

Just blood work (see below sig/never mind/can't find blood work at the moment - neurologist ordered this blood work - I called him back to say I still have symptoms . . . no return call . . .no follow up . . . I called again a week later . . . the same thing). No big red flags on the blood work they did but given their 'skills' in this area . . . they probably provided me with blood work that was of little value for my problem.'

I told them my back rarely hurts (which is true) so they did not image it.
Thank you for the links below. I will look into them after Christmas.

Thank you for you time, concern and info.

I am very appreciative.

I imagine insurance will be problematic. I have health care insurance . . . but you know the deal . . . if possible to get my previous life-style back through PROPER treatment (or, even half of it back) I guess I can cash in my 401 IRA . . . but it is only worth $30K so that wouldn't get me very far down the DX road . . .

Thanks again,

Dean

Hi
the forum software is programmed to prevent links by new members as that is part of the anti-spam measures.

The only time you would get a "post too short" notification is if all your post contains is a few characters of text.

Welcome canifindagooddr. :Wave-Hello:

Nice to meet you!!
 

After just a quick look at the test results, I would think that an MRI of your spine might be a good starting spot since possible radiculopathy is mentioned. You don't need to have back pain to have spinal problems.

Many times an MRI is used to rule out some spinal possibilities as well as look for spinal issues. Tracking down the trouble spot of an electrical short is more difficult in the human body than in a building. Good luck. Hope you find a doc that will investigate and pay attention to you.

Any chance your MD brother might have contacts through medical associations, colleagues, etc. that may be able to help you find proper medical care in your area or at least nearby?