What's polyneuropoly

[lor]

Hello everyone. Iv'e been coming to BT for years. I have epilepsy & go to that room, chit chat, emotional support & others. Last Thanksgiving I had 3 seizures & my heart stoped. I was in the hosp. for one month but remember nothing of it. Then I was in rehab. for 2 months. At home I still hurt so I thought of trying a chiropractor. The other day she had me get a CT scan then that night called me to tell me I have polyneuropoly. Can you tell me about it & is there anything for the pain but taking Advill?

[lor]

I'm sorry. I made a mistake. It's "polyneuropathy". I know why I wrote that wrong. After all my problems I'm still doing weird/backwards things, after I got to "op", I thought of monOPLY (the game). Weird huh?

[Mark N]

Lorrine, I hadn't heard of it so I checked up on several sites about it and this is one of the better ones Only registered and activated users can see links., Click Here To Register...

I hope it helps as an autoimmune disease that effects nerves in the body outside the spinal cord and brain doesn't sound very good. If you are diagnosed with this it is likely a major source of your pain and muscle weakness.

[Kathi49]

Lor, I was diagnosed with polyneuropathy some time ago. "Poly" just means more than one nerve is involved. There are various kinds such as Mark mentioned with the link. My own is idiopathic...meaning they simply don't know what caused it. Although my own theory is that spinal nerves were compressed for too long. I don't know how a Chiro could diagnose this as it is a neurological condition. So, my suggestion would be to get a full neurological workup which involves a lot of testing; most of it is bloodwork. But I also had a QSART done. It could be something such as a B12 deficiency or something else. Or, it may be, as in my case, they just don't know. All of my own tests came back negative. So, in that regard, you just have to treat the symptoms. Also, on Neuro Talk there is a Neuropathy forum and one of the members has developed a spreadsheet that you can take to your doctor. I hope this helps. And if it helps to make you feel a little better, my own has not progressed since it is not CIDP.

[lor]

Thankyou Katie. I have epilepsy & recently had 3 bad seizuers in the car with no one looking at me, my heart stopped so I don't know how long I was out. It could have been 5 min., with my heart/me dead. If it could have been from my epilesy, I,m so XOXOXO mad at my neurologist for not doing anything. I was out of it in the hosp. for 1 month then in rehab I started mentining mussle pain. (I hadn't been to a chiropractor yet).

[Leeaelle]

Hi ~ Polyneuropathy is a non-inflammatory disease of the nerves which is usually caused by "toxins." Of course WHAT toxins, remains to be seen. I suppose it could be medications, etc. I would seek help from a Neurologist and see what he comes up with. Best of luck & God bless! Hugs, Lee

[joy]

Ugly talk about injuries! Idiopathic peripheral neuropathy

I have it myself, only still called Idiopathic. My feet are totally dead and my hands are 1/2 there or more. I cannot button shirt or zip clothes for hardly anything. I usually use one of those hook type things to help (of course I have misplaced it).

My brother had used his 4-wheeler to work in his garden and I was there just after he had shut motor off. I wanted to ride it so went onto my side of the farm, all together riding about 20 minutes. Not wanting to let a limb or anything catch my feet, I held them close to machine.

The engine was still very hot only I didn't feel it at all. Nice scar on ankle as I was wearing low cut Merrill shoes. And therapy for some time.

My fall last weekend means that after hubby's shoes came off, I had to walk on some rocks to get out of lake. The toe on left might squeek by but the size of the skin still coming off the right foot is growing daily. Drat it all I must have gotten rid of my hard boot with rounded bottom that I wore for same foot years ago. I already had one bone removed from the right foot in 2002. While at Mayo Clinic I walked a tiny sore down to the size of a quarter while going from appointment to appointment. Never felt that back then either.

May 26 at lake I was in such a hurry to ride jet ski and be at lake by time grandson and his family were there that I forgot my water shoes. Big mistake.

Shoes and or gloves if hands are like mine are a necessity. Hubbys were just way to big to stay on my feet and I was not the one to load the jet ski like usual so that meant doing some walking in lake unfortunately. But they were just too big of shoes, someone laughed and referred them to skis because they were so big.

Tomorrow a call to foot doctor and probably therapy starts again. You have to be extremely careful and I thought I was doing so. But everyone is usually different. I am really desentisitised from knees down in fact and other places. And tops of thighs when it bothers me just feels like a bad sunburn. Or cold, it is confusing because brain is getting signals scrambled now it seems. Not getting any better best I can tell for me and Mayo Clinic in 02 was not much help if any either.

But I still think deep down, someday "whatever" my body needs and/or is lacking I may accidently hit upon it and feel those awful burning tingling pains all over again, meaning I HOPE that things will reverse for me.

Hey I KNOW I am way better off than my terminal stage 4 breast cancer friend so I don't usually whine much anymore. Mother was a diabetic and I can reall her rubbing her feet and knowing hers were bothering her as well.

It also took years for doctors to get the right medicine for my daughters seizures. She has not had a seizure for years now, three maybe even four I believe and that is wonderful as they use to be so frequent. I do so hope things improve for you Lor. Don't let what I said about myself frighten you Lor, I think secretly that because an eye doctor had me on some vitimin especially for my eyes and Mayo caught that I needed iron and it had something else added to it, I may have had way to much of some usually good things. Just overvitiamined on some things. Even tho I always had a list of everything I took that I gave each doctor faithfully, I don't think doctors are as smart as we believe they are at times.

You take good care Lor. I was so glad when you rejoined us. We missed you while you were absent.

[Mark N]

Joy, I hope things reverse for you too. You have a lot going on and it is a wonder you can keep up with it. Your friend is only worse off due to death being close but also means her suffering would be over while your suffering has no end in sight so don't diminish what your suffering is. It is good to hear they have your daughter's seizures in better control. You are right about many doctors as they don't keep up with our issues very well but thankfully there are some that do. It is the reason I tell people to be their own best advocates as you never know if you are getting the best treatment or not.

[Mal L]

I am posting here to bring the thread to the top. There is good advice in this thread. I think the correct word is peripheral polyneuropathy. Remember that a diagnosis has to be correct before you can deal with the problem. Also, I tend to be skeptical about chiropractors - they're not MDs, you know. Another option is a neurologist. I read here recently that you had a fall and have pain at night. Feel free to discuss this, and you may get additional assistance. I wish you well.

[Mal L]

Posting again to bring the thread to the top.