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Old 11-29-2007, 05:22 PM   #1
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New symptoms of PN

I am wondering if anyone else has this sensation. First let me say that it was 20 years ago I was first diagnosed with PN. In all those years as it progressed and tests were performed it still remains idiopathic (unknown). About 9 years ago I was started on pain medication to treat what had become continuous nerve pain in both feet. For years it was considered a de-myelinating form, now it is still that plus a neuroaxonal form, lucky me. In just the last month this new set of symptoms developed, and they seem here to stay. The feeling is as if a million nerves are misfiring in both calfs, and only with really focused concentration can I get my leg muscles to relax. As soon as I stop and do something else, the legs tighten up and the feeling of tension returns. Has anyone else had this symptom, if so, have you found any way at all to relieve the feelings? Appreciate any input. Paulo

 
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Old 11-29-2007, 08:27 PM   #2
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Re: New symptoms of PN

Hi Paulo, i don't know if this could be any value to you or not but a couple years back i was getting really bad calf cramps, nearly every night and what helped tremendously was magnesium and calcium, if i remember right it was 2 parts calcium to 1 part magnesium.

 
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Old 12-07-2007, 08:54 AM   #3
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Re: New symptoms of PN

Have you been evaluated for CIDP?

 
Old 12-07-2007, 09:04 AM   #4
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Re: New symptoms of PN

when you say that 'tests" were actually run on you,just what was actually done and where and how long ago were they done?what was the most recent MRI and just where was it done?any significant findings on these tests at all?just need some more in depth info.Marcia
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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 12-07-2007, 01:28 PM   #5
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Re: New symptoms of PN

Just another thought, do you keep yourself well hydrated ? as that also can cause cramping as well as to little magnesium/calcium in one's diet.
When you say demylating form of PN, then i assume you mean that the mylen sheath the covers some nerves have been found to be damaged, so i am wondering if it's the progression from your feet causing these new problems, have you been tested for b12 deficiency ? i believe these days anything under a score of 500 is a concern [by Japanese expert standards anyway].

Last edited by Aussie100; 12-07-2007 at 01:29 PM.

 
Old 12-07-2007, 05:35 PM   #6
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Re: New symptoms of PN

Paulo60:
What kind of medications do you take. I have a similar problem in my feet although it was caused from nerve damage from surgeries to correct neuromas that were in both feet. I was just curious what you are taking and how well it works.

Brian

 
Old 12-08-2007, 12:54 AM   #7
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Re: New symptoms of PN

Quote:
Originally Posted by feelbad View Post
when you say that 'tests" were actually run on you,just what was actually done and where and how long ago were they done?what was the most recent MRI and just where was it done?any significant findings on these tests at all?just need some more in depth info.Marcia
Let's see. I have had a CMT genetic panel done by Athena labs, it showed one mutation on a sequence but was not positive for CMT, even though I have symptoms of both Type 1a and type 4. To the other post, yes I have been evaluated for CIDP, and it is one of several diagnoses I have received over the years, but based on nothing concrete; just one neurologists opinions. Last month I had labs testing for heavy metals, B-12 deficiency, complete chem panel, both general and special, 12 tests in immunology (too many to list here) electrophoresis (SPEP) same test with urine, Immunofixation, serum, vitamin E, plasma or serum, anti-ssa, anti-ssb, Methlymalonic acid serum, sjogren's Ab, quant, etc. The only test I have not had done has been a nerve biopsy, and will get around to that in January. For about 18 years de-myelinating peripheral neuropathy was the impression from nerve conduction and EMG tests. Then 2 years ago the same tests revealed a neuroaxonal neuropathy, in addition to the de-myelination. I am on 20mg oxycontin 2 x day, plus I have available 2 10mg short acting oxycodone, for pain. I have had both knees replaced, hand reconstruction, both due to advanced osteoarthritis in every joint, particularly the spine, along with degenerative disc disease and radiculopathy, stenosis of the canal, the whole catastrophe. I have heart disease, 3 stents and a triple bypass from a heart attack and then a serious blockage, a year after my heart attack that required the bypass. There is more, but that's enough for now. Thanks for your query. If you can think of something else that can be tested by serum or urine, please let me know. Happy Holidays, Paulo

Last edited by paulo60; 12-08-2007 at 12:55 AM.

 
Old 12-08-2007, 08:58 AM   #8
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Re: New symptoms of PN

just wondering since i didn;t see this listed.have you ever had any MRIs done on your spine from top to bottom?this is just one other possible place that could be generating the types of symptoms you have been experiencing.it could explain some things depending on what could be going on in your spine or direct affectation of something having to do with your spinal cord itself.just a thought since i didn;t see that listed with all the other tests you have had done.?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 12-08-2007, 01:12 PM   #9
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Re: New symptoms of PN

my legs are sometimes weak and shakey and once of twice have fallen with it. I do get leg cramps though at night.

 
Old 12-09-2007, 12:13 AM   #10
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Re: New symptoms of PN

Quote:
Originally Posted by feelbad View Post
just wondering since i didn;t see this listed.have you ever had any MRIs done on your spine from top to bottom?this is just one other possible place that could be generating the types of symptoms you have been experiencing.it could explain some things depending on what could be going on in your spine or direct affectation of something having to do with your spinal cord itself.just a thought since i didn;t see that listed with all the other tests you have had done.?Marcia
Yes, many times, cervical, thoracic, lumbar/sacral mri's, most recently a cervical mri last month. Findings: From C-3 to C-7 multiple disc protrusions, some compressing exiting nerves from foramen, some compressing cord. Thoracic spine as of 2 years ago was ok. Lumbar/Sacral shows again multiple disc protrusions and nerve impingements, most notably at L-5 - S1, but also at L-4 where there used to be a herniated disc but has now become a vacumm disc phenomenon, meaning space. I feel like my whole spine is held together with glue and paperclips, but no surgeries, yet. There is definite interfacing with the dying nerves that either don't even register on an EMG or show severely latent velocity; all nerves tested are either absent or abnormal. The neuropathy is very real and has been so for 20 years, progressively worsening each year, but with no clear diagnosis. I literally have pain from the neck to the toes, but the orthopedic pain is secondary to the neuropathic pain, which never stops unless I sedate myself into sleep with pain meds in my system. On the bright side, I am alive, and have insurance, so as things break I can have them fixed. No boo hoo here, it's all about management and never giving up hope that with aggressive doctors and newer lab opportunities I will maybe find that my neuropathy is not what has been suspected lo these many years, e.g., inherited idiopathic CMT type variant. My mind is completely open to any and all input, and grateful for a forum that allows it. Thanks to everyone. Paulo

 
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