View Full Version : Need input...neuropathy type?
04-05-2010, 05:43 PM
:( For those of you that have had neuropathy for awhile, maybe you can shed some light on types of neuropathy you have. I have undifferentiated connective tissue disease(autoimmune disease of some kind) and I have been sick since I was 19 starting with death defying/painful IBS. At age 27,after the c section birth of my daughter, the symptoms began -weaknness in limbs, gland problems, dryness Everywhere, pain in my feet upon standing in the morning after getting out of bed. Most Doctors though I was a complainer and brushed me off like I was CRAZY !! LOL All autoimmune blood tests are negative, but have all the symptoms. Major Neuropathy pain started in my face about 2 years ago after a major infection in my face after a root canal in a tooth went horribly wrong..talking about pain ...OMG...I practically screamed for my meds while in hospital. Well here we are two years later and the neuropathy has gone from numbness to pain in various spots in my face and jaw...gums and teeth..dentist thinks I am crazy because he can't find problem with teeth...says it must be nerve damage. Today for the first time I awoke from a nap on the couch and had this horrible burning pain up the back of my head from laying on it. The burn lasted for about a minute and went away. Also when I bang my hand against something or press my hand down on something like when opening an edged item like a jar..I get nerve pain in my hand that lasts a couple seconds and goes away. This also happens when I accidentally stub my foot on something. This is not normal pain like others feel I know because I remember what that feels like...it hurts, but not like this. I have a feeling this neuropathy might be related to my autoimmune disease. I do need to ask my GP for a referral to a neurologist, just wonder if anyone knows the difference between the symptoms of autonomic..peripheral...small fiber..there are so many kinds and I wanna know something before heading to the neuro. I guess I will need an EMG and hopefully a skin punch biopsy to find out what the heck is going on..I am scared. Any input would be helpful..even an explanation of your pain. Thanks Mary
echoes long ago
04-05-2010, 06:44 PM
Hi I have sensory motor axonal polyneuropathy.
At one time within the first year of PN i had the exaggerated pain in my feet that you describe. When hitting my foot or stepping on something small like a pebble the pain was 10x what it should have been. As my feet became more and more numb that has lessened to a great degree though now its more of a delayed pain when i hit my feet or step on something though not as exaggerated.
My hands now are somewhat at the exaggerated pain stage though nothing compared to what my feet were.
Now my main pain is when i stand or walk and it feels like i have broken bones in my feet. that has continued to get worse over the last five years and is really limiting my ability to walk or stand for long. Then after my feet hurt for the rest of the night. i have really cut back on my walking the last year or so.
Back when i had the exaggerated pains in my feet my emb/ncs of my feet showed mild to moderate nerve damage and now they show severe nerve damage.
you seem to be moving from numbness to more pain which is the opposite progression of mine so i dont know how much help my experience will be to you.
That broken bones feeling in the feet is pretty bad though and nothing touches it. Amitriptylene, wellbutrin, lexapro, neurontin, lyrica, topamax, oxycontin, nothing touched it.
Not even when i was put under for an endoscopy, when i woke i felt the pain in my feet when i stood though no where else.
04-05-2010, 09:55 PM
This web site under 'neuropathies' is a good starter:
This is a set of 'guidelines' for diagnostics:
This in combination with Liza Janes' worksheets up in the stickies can help you decide how thoroughly you've been tested and also keep track of the testing...which can be quite confusing, especially when you hurt!
Since your neuropathy and pain is more 'progressive' than a normal or 'stable' type of PN, you mite want to get copies of what testing has been done to date [mite cost you some $?, but worth it!] and go and get a second opinion from another doctor, either in your area or elsewhere. You've not likely been thru the basic testing yet to say go to the Mayo or elsewhere yet.... Besides it costs too much for starters.
As Echoes said, walking on broken bones is a good description. I even once considered amputation as the pain was soo bad, but decided the 'phantom pain' of such procedures wouldn't make a lot of difference.
Pain killers don't do much for me anymore, the pain is habitual and constant. Just try and keep MOVING as much as you can for as long as you can tho.. I don't know about you? But wheelchairs really aren't my style, nor are they 'easy to use' out in the real world!
So GO! and seek another opinion and at least know what you will have to deal with? And don't write off autoimmune possibilities, as at times, they don't show up rite away. Sometimes it can take two years to show up. Further? Is the IBS under control? That could be considered a 'toxic' aspect to your neuropathy - Don't be afraid to ask questions. Folks are GOOD here, they know pain. And, how best to deal with it! Keep plugging away, we all are - :hug:'s - j
04-06-2010, 08:04 AM
--in most of the major vascultic/connective tissue autoimmune anti-nuclear-antibody diseases (he wrote, adding to dahlek's list of links to the Washington University Neuromuscular Disorders website):
And, there are other autoimmune situations that attack nerve directly, such as developing natibodies tonerve components such as sulfatide or myelin associated glycoprotein.
In vasculitic/connective tissue disorders, one can have neuropathy from multiple mechanisms--the breakdown of blood vessels may hinder the nerves getting nutrition and oxygen and eliminating wastes, or, the compressive forces on them from connective tissue changes may damge them, or the drying out of mucous membranes may make it harder for normal chemical reactions of metabolism to be carried out.
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