Where do I go from here?

A forum to talk about the general challenges of daily life with MS.

Postby stillfighting » Tue Jan 25, 2011 11:06 pm

I would see if I could get a copy of my MRI reports and get a second opinion from another neuro. It sounds like to me he is basically treating you for ms. He is just not scripting any of the ms meds like Rebif or copaxone and the CRABS .. sit down and have a really detailed talk... if you can with this dude.. He knows something is not right...
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Postby Edward » Tue Mar 29, 2011 9:46 pm

Hello Everyone, thank you all for all the great posts and wisdom you have all shared with me on this forum.

I wanted to provide everyone with a little update on my situation and hope it may be able to help someone else that is going through the nightmare I have been going through just like many of you.

After all the neurologists I saw in Southern California said we don't know what else to test you for and now it's just a matter of waiting to make a diagnosis of MS when we "see" a physical disability because nothing is testing postively for MS.

I will try to make this long story short...

My health continued to decline, in that my body continued to weaken and I lost feeling in just about everything and the heat intolerance was making things even more intolerable.

Well because the Neuro's in Southern California couldn't make a diagnosis, my lovely wife of 20 years decided I was faking it and filed for divorce throwing me out of my home. I had no where to go, I had no energy to try to move any of my things so I just drove to where I could get with family up in the Portland Oregon area.

As soon as I arrived I made an appointment with the first neuro I could find on our health insurance website and I made an appointment.

The next week, I saw him and as usual went through the entire interview process all over again and this time I had all my records with me. He took my records and said he would see me next week. When I returned for my second appointment with him he said, have your heard of a condition called, "Peripheral Autonomic Neuropathy?"

Well of course I haven't and he described that the symptoms of this condition are similar to what I was experiencing. So I was referred to "Oregon Health Science Uniiversity" or OHSU. I was sent to the Neuromuscular specialists there to test for this condition.

While waiting for the tests at OHSU I'm telling my sister what this doctor was suspecting as a diagnosis and frankly I was a little worried we may be going off on the wrong path but I had nothing to lose at this point!

My sister called me back within a day or two to let me know that there's a B12 deficiency factor in causes of peripheral neuropathy's. So without to much hesitation, I went and begged my primary doc for a shot of B12 and she agreed to do it and I was completly amazed at how that one shot made me feel a whole lot better! Without going into the long story here again, I have injected myself over 23 times of 1ml per injection over the course of about 46 days and have experienced a significant improvement in many of my symptoms.

I went in for my results today and they confirmed I have what's called an "Idiopathic Small Fiber Neuropathy"

I still have to continue my diagnoses to find the cause. So I have no idea what I'm looking at in the future.

I hope my journey has been able to help anyone that comes across this that has similar problems.

Thank you all again and take Care

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