I've got a disease called Polyneuropathy and the cause is unknown.
I live in Denmark and it's hard to find information about Polyneuropathy, causes, treatments. The doctors can't help me because the cause is unknown.
Does anyone know of any good medicine?
Can not figure out whether it is good to be physically active?
Maybe there are some alternative treatments?
What can you do to find the cause?
Hi and welcome to this forum, who come to the conclusion it is idiopathic neuropathy [unknown cause] ?
I ask this because only a neuro that is a specialist in neuropathy will not leave any stone unturned looking for a reason why your nerves are damaged, the cause/s can't always be found but they will give it their best shot.
Unfortunetly there are a lot of neuro's out there that are not very familar with neuropathy and only give the very basic tests and give up far to early, i learn't this the hard way and now know plenty of other nueropathy patients that went through the same thing, i had one idiot professor of neurology give me the wrong test for my symptoms.
I am sure others here will chime in soon, your certainly not alone with this inflication, i think it helps to talk to others who are going through the same thing.
best of luck to you.
The Following User Says Thank You to Aussie100 For This Useful Post: June89 (04-26-2012)
Hi, welcome.. polyneuropathy meaning many nerves are damaged causing pain... what are your symptoms? Is your neurologist giving you any meds for your pain? Have you had a EMG test? sorry for all the questions but if you could define your neuropathy more , maybe could direct you better for some help. Being active is good as long as you can do it. My neuropathy prevents me from walking very much and keeping my balance. I take many drugs. You have to try a pain clinic to help manage your pain. Don't give up. keep strong. June
The Following User Says Thank You to June89 For This Useful Post: schieck (05-04-2012)
Since the doctors don't know what is causing your polyneuropathy, they will probably treat the symptoms as well as ensuring that you are getting the right amounts of vitamins, minerals, and other nutrients. Are you experiencing pain and/or muscle weakness? What other symptoms do you have? This information is important to help determine what medications are likely to help you.
Truely the most common type of neuropathy is unknown or idiopathic. Good medicines are Lyrica and Cymbalta. It is good to be physically active, TaiChi has helped my neuropathy immensely. It has helped with balance and pain, I could not attend a full class five years ago and now I do three a day two days a week plus what I do at home.
For information look up the foundation for peripheral neuropathy or the neuropathy action foundation or the Neuropathy Association which has a good book by the name of PERIPHERAL NEUROPATHY: WHEN THE NUMBNESS, WEAKNESS AND PAIN WON’T STOP. I cannot give you the web addresses because that is frowned upon on this board.
Good luck and keep in touch.
The Following User Says Thank You to tingles For This Useful Post: schieck (05-04-2012)
The advice from "tingles" is very good. There are many resources available today that didn't exist even just five years ago, and considerable research is ongoing to help people understand nervous system disorders. As you probably already know, neuropathy is not well understood, and polyneuropathy that is idiopathic (of unknown cause) is particularly poorly understood.
As for medications (at least in the United States,) Lyrica (pregabalin) and Cymbalta (duloxetine) are widely used, as are Elavil (amitriptyline,) Pamelor (nortriptyline,) Effexor (venlafaxine,) Klonopin (clonazepam,) and Tegretol (carbamazepine.) Hydrocodone and oxycodone are among the many opiates also used for moderate to severe pain. Please note that this "list" of drugs is not comprehensive, but can be used in discussions with your doctors. Exercise, a proper diet, and physical therapy can also help you manage your polyneuropathy.
The Following User Says Thank You to jverive For This Useful Post: schieck (05-04-2012)
Hi June
Earlier I have been taking Gabapentin, and now Lyrica, mut it does not help me for my pains, and sleeping (piling) feelings in my feets, legs, arms and hands. I have had a EMG test. A pain clinic cant help me (my docktor/Neurolog says), because there are no meds that can take away the sleeping (piling) feelings.
(Sorry for my bad english)
Good luck to you and keep in touch.
Marianne
The following user gives a hug of support to schieck: June89 (05-07-2012)
Hi schieck, I am sorry that you are having this pain. I take a combination of lyrica & cymballta with morphine at supper. I have a sleeping pill and oxyicodent for breakthrouh pain. It has taken me 2 years to come up with this combination of meds that I believe helped me if you can survive the side effects. Best of luck.. June
..also I have now had 3 EMG tests and all were done wrong with my current DR doing the 4th one finding the data he needed to help diagnose me. don't give up!!
