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Old 04-21-2013, 06:32 AM #11
glenntaj glenntaj is offline
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Default That is good news, echoes--

--will it help in terms of getting any services/therapies prescribed and/or paid for?
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Old 04-21-2013, 10:54 AM #12
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--will it help in terms of getting any services/therapies prescribed and/or paid for?
hopefully. that is the next step.
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Old 04-21-2013, 01:08 PM #13
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Wow, thank you all so much. To answer your questions:

Susanne, no genetic testing (though my sister has PN). The blood tests they're doing are Antinuclear Antibodies, B12 and Folate, RPR, Throxine (T4), Triiodothyronine (T3), T3 Uptake, TSH, 3rd generation, and other testing: 042580, 001453, 225920. (I have no ideas what these tests are, but he did say he would do thyroid tests, so some of them are probably for thyroid.)

Echoes, I've had it for seven years, but diagnosed six years ago. The first year was horrid. I couldn't walk any longer than 5 to 10 minutes before I was in severe pain. I went to neuro after neuro after neuro. I finally ended up with Dr. Hopkins at Emory. He diagnosed small fiber, but apparently that's not what it is.

Koi13, the symptoms were horrible pain in feet, and worse when trying to walk. Also, shooting electric-type pains.

Raglet, I have Rheumatoid Arthritis (in remission right now). I can still walk relatively well, have trouble with dizziness (not sure if it's from the feet or not). Sometimes, I have vibration, while in bed for night, from my feet all the way up to my head. Is this common?

Glenn Taj and Echoes, thank you so much for the explanations and the links. I'll be checking them out soon. Do any of you have an idea what the prognosis is, if they can't find a cause? I am a very young 68, still working from home.

Oh yes, I don't know if this has anything to do with anything, but I have advanced deg. disc disease, cervical and lumbar too.
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Old 04-22-2013, 06:25 AM #14
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Default You may well be--

--"co-morbid"; that is, have symptoms that are contributed to by more than one condition.

It is often very hard to tease out the symptoms of spinal/nerve root problems from those of problems of peripheral nerves farther down the line--the symptoms can be exactly the same. All people with chronic neurological symptoms definitely need imaging--usually MRI with and without contrast--of suspected spinal problem areas to see if nerve or spinal cord compression is frankly evident.

Moreover, rheumatoid arthritis is definitely one of those autoimmune conditions that can result in neuropathy:

http://neuromuscular.wustl.edu/antib...max.html#rheum

There is something called the "double crush hypothesis" in which it is theorized that nerves already compromised by one condition that then become compressed in some manner produce symptoms greater than the sum of the parts would lead one to expect. This is often mentioned for diabetics with nerve damage who then get spinal or nerve root compression on top of it, and have very bad symptoms, but I suspect it happens fairly commonly in other situations as well (such as when chemotherapy patients--many chemo agents are notoriously neurotoxic--experience nerve compression).

Last edited by glenntaj; 04-23-2013 at 05:41 AM.
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Old 04-22-2013, 07:22 AM #15
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If your sister has PN and isn't diabetic, that may be very significant. Mine was early onset with cluminess, an inability to run, skate, or jump since childhood, but no pain. I am extremely tall and large boned so very strong which compensated somewhat during my young adult years, raising a big family.

As other have mentioned, first PN symptoms began with numbness in toes which spread upwards, beginning in my 30's, along with balance problems, ankle weakness, and a tendency to trip on curbs, etc. I spent years attributing leg pain and weakness/fatigue to varicose veins, phlebitis, etc. before being sent to a neurologist by my podiatrist. I had developed a seriously infected callous without knowing it and the debridment and cleaning up was done without any anesthetic, I was that insensate. It was already pretty severe. Like Echoes, my numbness is above the kness now.

I would definitely pursue the question of a hereditary neuropathy with your doctor. My own belief is that a lot of idiopathic cases are actually hereditary.
Hope you get more info soon!
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Old 04-22-2013, 01:11 PM #16
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I was diagnosed mild to moderate chronic sensory distal axonal symmetric polyneuropathy with small fiber modalities. That long worded description was the exact writing in my doctor's report.

I don't think my symptoms are getting worse. Honestly though it is sometimes hard to tell with a sudden flare that crops up from no where. My flares effect hands and feet ( sometimes memory fog as well). Numbness in soles of feet, random cold feeling in feet and tingling in hands along with an occasional stab of pain now and then. Also, some odd sensations in the scalp which are now pretty rare but re-occur minimally with the flares.

Typically a few days later the flare subsides. Tingling in hands go away completely at times. The soles of my feet always have some numbness , but the max and mins between are significant in comparison. Sometimes I can barely feel numbness under my feet at all. It is so weird!

This condition is frustrating and scary. I just keep fighting through it hoping that I'm slowly improving or at least staying the same.
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Old 04-22-2013, 06:41 PM #17
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I was diagnosed mild to moderate chronic sensory distal axonal symmetric polyneuropathy with small fiber modalities. That long worded description was the exact writing in my doctor's report.

I don't think my symptoms are getting worse. Honestly though it is sometimes hard to tell with a sudden flare that crops up from no where. My flares effect hands and feet ( sometimes memory fog as well). Numbness in soles of feet, random cold feeling in feet and tingling in hands along with an occasional stab of pain now and then. Also, some odd sensations in the scalp which are now pretty rare but re-occur minimally with the flares.

Typically a few days later the flare subsides. Tingling in hands go away completely at times. The soles of my feet always have some numbness , but the max and mins between are significant in comparison. Sometimes I can barely feel numbness under my feet at all. It is so weird!

This condition is frustrating and scary. I just keep fighting through it hoping that I'm slowly improving or at least staying the same.
Thank you, Karstan, GlennJ and Susanne. I found the comorbid information really interesting, Glenn, since I have RA (in remission), deg. disc disease, as well as sensimotor polyneuropathy. Makes you wonder, doesn't it?

Susanne, I'm not sure about my sister's PN since she's usually pretty busy and we don't have much time to talk. Next time I email her, though, I'll ask what kind she has.

Karstan, sounds like you're at the beginning of PN. I've had it about seven years, and it started off with a bang for me. I couldn't walk any longer than five to ten minutes, without being in excruciating pain. That's what sent me to numerous neurologists trying to figure out what was wrong.

One more thing, I went off the statins since every time I tried to take them, I would have serious heat intolerance issues. I have heat intolerance anyway, but I had really bad issues while I was on the statins.

I really appreciate you all taking the time to weigh in on this for me!
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Old 04-22-2013, 08:37 PM #18
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Oh my, whatever you do, stay off the statins!
I was on Tricor for about three months, lost all sense of balance, fell three times trying to walk up to the high altar with my husband and son for my youngest's first communion, even with a cane.
My neurologist, who was new at that point and very careful about contradicting anything my PCP had prescribed said rather coyly "you might want to stop taking that".
I improved dramatically. In fact while I am weaker now, four years later, my balance has never gotten as bad as it was on the Tricor.
I believe statins and triglyceride meds are contraindicated in all PN cases, but for CMT'ers they are pure poison. Lots of info on statins on this forum.
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Old 04-23-2013, 12:44 PM #19
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Oh my, whatever you do, stay off the statins!
I was on Tricor for about three months, lost all sense of balance, fell three times trying to walk up to the high altar with my husband and son for my youngest's first communion, even with a cane.
My neurologist, who was new at that point and very careful about contradicting anything my PCP had prescribed said rather coyly "you might want to stop taking that".
I improved dramatically. In fact while I am weaker now, four years later, my balance has never gotten as bad as it was on the Tricor.
I believe statins and triglyceride meds are contraindicated in all PN cases, but for CMT'ers they are pure poison. Lots of info on statins on this forum.
I never took statins, but had fairly high cholesterol. I started taking one cayenne pepper pill with each meal about 2 years ago. You have to take it with the meal or you will be sorry. My levels dropped from over 200 to 135. Google search it sometime. I know it made a difference along with exercise and diet. They say it acts like a scrubber and helps remove it from the arteries. Natural solutions can be the best solution.
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Old 04-24-2013, 01:55 PM #20
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A cayenne pepper pill. Hmm, I think I'll try this. Does it affect GERDs? I have issues with that too.

Yes, Susanne, I've been off statins for several years. I have no idea what my cholesterol readings are now--they used to be really high. But, I've done pretty well without the statins. I was miserable on them.
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