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Old 10-11-2007, 01:53 PM   #1
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Debilitating symptoms--small fiber neuropathy

Hello,

I am new to this board and am writing to see if anyone out there has the same symptoms as my husband. His has been called autonomic neuropathy and small fiber neuropathy.

In reading some of your posts, I haven't seen mention of the debilitation that has come with his. This came on suddenly in March, 07 and has progressed to the point where he has been off work since June, 07. He has been almost bedfast for the last 3 months. It started with burning in the feet and has worked its way up the inside of both legs, groin, and rib cage. He has lost over 70 lbs. and has no appetite. He also suffers from severe constipation, problems urinating, severely low blood pressure. He can barely walk and passes out sometimes from the bp drop.

He is on Lyrica, fludrocortisone, darvocet, as well as laxatives and stool softeners. Nothing seems to help his symptoms. Drs. have found a mild hypothyroid condition and also prescribed meds for this, but say this isn't the cause of his problems. No cause has been determined yet, but we had to wait months to get into the Cleveland Clinic's Neurology Dept. just for testing.

Is anyone else out there in this severe condition, or do most people seem to still be able to function with this? What can we expect in the future? Is there any hope of a return to a normal, active life? He always a very hard worker, loved to go boating, biking, scuba dive and travel. Now he can't even take out the trash.

Thanks for your insights.

 
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Old 10-12-2007, 05:52 PM   #2
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Re: Debilitating symptoms--small fiber neuropathy

just how did the docs actually arrive at this particular Dx?what types of actual testing or scans has he had done and where were they done on his body?this could possibly be spinal related with some level of sympathetic nervous system involvement(the actual SNS chain runs along the outside of both sides of the spinal column,with the ganglion sitting within the neck area alongside the larynx.).mine was damaged at the spinal level and created alot of really incredible ongoing symtoms.just wondering what,if anything actually showed up on his MRI?i am just assuming he actually had one done if they were able to make that other Dx?the sudden onset of this just really seems a bit odd.was he actually 'doing' anything shortly(within a day or two) before these symptoms showed themelves that involved heavy lifting or torqueing(twisting) of his upper body in some way?was he having ANY actual pain anywhere before this sudden onset?you just really need to make certain that all other possibilities for his symptoms are looked at thoroughly before actually 'settling' for any Dx of anything really.Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 10-20-2007, 09:02 PM   #3
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Re: Debilitating symptoms--small fiber neuropathy

I have not been able to get back to the board for a while. Thanks for the reply. Tests: emg, pupillometry, skin biopsy, celiac, paraneoplast, glucose tolerance, cardio autonomic reflex, lipid panel, monoclonal prot, anti ssa, copper, seruloplasmimn, zinc, cbc, comp. metabolic panel, b12, methylmalonic acid, hiv screen, htlv, coenzyme, chest x-ray, chest ct scan, mri brain, mri c spine, mri t spine. All coming back in normal ranges.

As far as we can remember, he had no abnormal twisting or other back injury around the time of onset. We are so scared, and don't know where to turn next.

 
Old 11-04-2007, 12:59 PM   #4
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Re: Debilitating symptoms--UPDATE Amyloidosis

Condition update: An abnormal protein found during testing has sent us on to Hemotology. Belief is that the condition is amyloidosis. Further testing is underway.

 
Old 11-05-2007, 08:31 AM   #5
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Re: Debilitating symptoms--UPDATE Amyloidosis

at least you "have' something to go on at this point,and that in itself is good news.hopefully this isn't overly serious.not too familiar with it.just wondering tho if you actually have your own copies of all tests,including all the MRI reports?you really do need to be keeping all of this together like in an expanding type folder that you can take along to all appts or espescially if he ever has to go to the ER.just grab that folder and go,you know what i mean?this,espescially in his case,would save a TON of time and hassle for both the docs and for you.i had to start doing this with my many medical issues.it just helps to stay on top of things.i am curious tho just what the findings were in his MRIs?what was listed in that summary area at the very end of the reports where they list any findings?believe me,just becasue a doc states things were 'normal' doesn't alweays mean things are.it all depends on HIS actual level of knowledge and expertise and just plain old experience as far as what any doc 'feels' is or is not an actual issue.been thru this myself with two seperate neurosurgeons.you just need to be checking things for certainty.hope things get better for him,and you soon.please keep me posted,K?marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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