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Sjogrens Topics => Living With Sjogren's => Topic started by: bigb00 on April 10, 2012, 04:58:38 PM

Title: I have a Diagnoses.. but now I'm more confused
Post by: bigb00 on April 10, 2012, 04:58:38 PM
Months and Months ago I was on here explaining my burning, tingling feet. Quickly many of you replied it could be some form of  Neuropathy.
So today I get my EMG / Nerve Conductive test.
We go through my history, We talk about Sjs.. in detail. And how i've done NOTHING to hurt, strain my feet in any way.
He does the tests. I have little or no response on the outsides and bottoms of my feet.
He tells me "good news is Sjogren's isn't causing your problems and your don't have peripheral neuropathy, Bad news is you have Tarpal Tunnel Syndrome / Tibial Nerve Dysfunction" He then explains I need surgery ( like with Carpal Tunnel except for my ankles )
So what do I do when I get home? I google this of course..
Well.. I must be losing my marbles, Because on SEVERAL reputable sites it says A. Systemic disorders can cause Tibial Nerve dysfunction ( they cause inflammation and compress the nerve) and B. It is a neuropathy!

Also states if you have a systemic disorder surgery would be useless.. as it will just inflame again..

Can anyone clarify this brand new diagnosis for me? Anyone with this and can shed some light? I'm so confused.

Thanks for your answers!


Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: Belsey1 on April 10, 2012, 05:21:55 PM
Wish I knew something about this, but I don't.  Hopefully someone will share some advice soon.  I m glad you posted, as I have never heard of Tarpal Tunnel Syndrome.

Good luck.
Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: jodie on April 10, 2012, 05:37:46 PM
I would absolutely get a second opinion before anything else, especially because now you have documented results.  Just out of curiosity, why type of doc was this?  Sorry I am unable to shed any light on this particular diagnosis as I, too, have never heard of Tarpal Tunnel.

Jodie
Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: rnathans on April 10, 2012, 08:35:55 PM
I do not know much about it but I think it is called tarsal, not tarpal.
Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: lostone on April 10, 2012, 08:36:49 PM
Get the results of the test and get a second opinion, dont let them start to carve you up,, you said it would probably do no good anyway, Been down that road before looking for relief and it only made things worse
Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: A66eyroad on April 11, 2012, 09:09:33 AM
Was it a surgeon who dx'ed you? Because surgeons do surgery --- it's like Abraham Mazlow said, if the only tool you have is a hammer you see every problem as a nail.

You might try a podiatrist or a chiropractor for a second opinion.
Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: DesignerS on April 11, 2012, 10:05:51 AM
The only thing I know about tarsal is that my adult daughter has it. She was a figure skater and believes the skates did the damage to the nerves. Now it is in her wrists though ehich makes me really wonder what is going on. I know its very painful!! Surgery was mentioned but only a 50% chance for help, and it can return again. I am sorry you are struggling with this, I see the pain it causes.

Designer
Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: bigb00 on April 11, 2012, 09:00:31 PM
Thanks for all the replies. First of all thank you.. it is Tarsal tunnel not Tarpal, guess I need to know what I have first of all.

Secondly the doctor who did the test is a Physical Medicine & Rehabilitation specialist who specializes in electrodiagnostic medicine.

The report will be sent back to my GP and he will discuss options with me. But it will take a week to get there.. and another week to get an appointment. So I just had to do some research myself.

I'm lucky that its only a burning and tingling sensation... Guess I will have to see what my GP says
Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: rnathans on April 12, 2012, 09:55:14 AM
Now I have to start out with a full disclosure as I may be biased somewhat. I am married to a neurologist. Physical Medicine docs are excellent for some things but do not have nearly as extensive a training in EMGs, etc as neurologists. He has often repeated tests done by physiatrists and come up with vastly different results and interpretation of results. If I were you I would get a second opinion from a neurologist.
Title: Re: I have a Diagnoses.. but now I'm more confused
Post by: quietdynamics on April 12, 2012, 12:42:43 PM
I had gone to the ER. Chronic migraines which manifested into other "symptoms".  Test were run, stroke considered, a neurologist called.
I am very happy with the degree of care and outcome with this Dr. who I have been seeing. He is the Dr. who requested I keep a diary.
(Date  -  Symptom - Activity - Notes)
Amended with meds,
(Date/Dose (if weaning on) - effect - Rate headache 0-5 - Notes) The diary is less than one page and he does use it.

When you mentioned the tingling,numbness and burning in your feet, I believe I could relate, and this is the next issue the neurologist is going to test for. My alarms were going off at the mention of surgery without further testing.
I hope you will consider a neurologist.