How long a wait is it to see a doctor at Cleveland Clinic who would be the TOP specialist in dealing with my Polysensory Neuropathy case.
I am trying to get into the MD you suggested here but that may take some time. Another Mayo MD was referred but he can't see me until March.
At this point in time I am at a loss to understand anything that's happening to me, all of my doctors thew in the towell except my Neuro.
This week he did that pinprick, cold metal, scratch,reflex,vibration testing and said I was improving . I don't understand how he can say that since the burning pain has escalated to EVERY body part except my calves. Ever since I started the Neurontin it has gotten worse. The pain has intensified unbelievably and despite more mg of Neurontin nothing helps anymore. This began four months ago and has intensified like you wouldn't believe. Hell on earth.
I tried to lower the dosage last week by 100mg and got this intense feeling of electricution that was the pain from hell. My doctor describes my case as PATCHY? and peculiar because it is episodic sometimes. One day there's burning in one body part the next everywhere intensely, and the next day somewhere else? And it's purely sensory. No Motor abnormalities,good strength in four limbs proximally and distally. There are no abnormalities in superficial and deep modalities. Vibration is normal, Pin***** Normal, There is minimal hypoesthesia in both feet in glove and in glove stock in distribution. There is no Hoffman or Babinski. reflexes are brisk to 3+ symmetrically. So what does that mean??????? My Neuro seems perplexed by my case. Does Neuropathy encompasses both Nerve Damage, Nerve Inflammation and Nerve Oxidizing? What causes this episodic effect? My Polysensory Neuropathy has been deemed just Sensory. But my doctor keeps referring to my case as PECULIAR! and rare.
I was also curious about the translation of one of my MRI's, the one of the brain done without any contrast. " a small area of increased signal intensity in the white matter of the right cerebral hemisphere is observed. It is just lateral and superior to the trigone of the right lateral ventricle. Another identified on the same image is subependymal in location and is barely perceptible on the T2 weighted images and flair sequence. These areas of increased signal intensity are small, measuring only about 2 mm in size.
I explained that my B12 came back 300 and Folic Acid 15.0 could this cause the type of whole body Polysensory Neuropathy I've described?
Intense burning of the whole body like you were literally lit on fire!
I was wondering if there was a test that shows an autoimmune response from your body. Since my doctors are going on the premise that this began after an allergic drug reaction, if an immune response takes place or autoimmune, would that show up in an Immunology panel? as mine came back fine! or is there other testing to determine that scenario?
Where your body would have an immune response to a drug and then attack itself. Is there a test to show something like that??????
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Please note my response to you other posting re Neurontin today.
Your complex problems will require a face to face consultation to
give you some help. The best way to answer your question precisely
would be if you call (216) 444 5559 - during business hours, and ask
how soon you can get an appointment with Dr Levin who one of our leading
experts in this area,they can then give you a precise date for the earliest
possible appointment.
Does Cleveland Clinic do consults with out of state Neurologists? If I were to send me records up do you do anything like this?
My Neurologist is at a loss to know what's happening. He says he's done every test there is except a spinal tap which he didn't feel was necessary.
He tells me he really doesn't know what to think. Originally he thought this was a drug induced neuropathy that would resolve in a few months. When it didn't and the pain and more body involvement increased he didn't know what to make of it since all my tests came back normal on everthing but the NERVE Conductor Test and the Low B12 and high Folic Acid, Now that I'm burning even more and the Neurontin isn't working and the B12 is low he seems totally baffled....
I'm totally in the dark because I thought perhaps the B12 thing was the key to my problem, only he doesn't seem to think so but he hasn't elaborated on what he thinks other than to say my case is peculiar and rare.
And he wants me to see someone else who has more exertise for a second opinion.
Why is my case rare??????????????????and peculiar?
Again thank you for educating me. Your forum helps so many people that cannot seem to get straight answers from their MD's. I think that just has to do with the fact that only a few specialties understand Neuropathy cases. Thank you again for being one of the few places people like us can go to get answers.
