It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Neuropathy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 07-29-2008, 09:16 PM   #1
Junior Member
(female)
 
Join Date: Jul 2008
Location: brilliant,oh,usa
Posts: 10
ravenfey HB User
need advice on meds. and how to deal with symptoms

First off please forgive my spelling I know its bad and I really am an adult not a first grader. My mom has MS and when I started having pain and weekness in my legs last year I got scared and got in to a neurologist as soon as possible.
I was diagnosed with periferal sensory neuropathy and he put me on prednazone and nerotin witched helped for a while then it came back and I was put on a second dose of prednazone at this time he told me it was progresive and probably wouldn't ever completly go away. I've been on a steady dose of 1 10mg prednazone and 3 nerotin (not sure of mg.) since the last full course of prednazone. This has helped alot and I haven't had trouble walking like in the begining, but still have symptoms that come and go.... pins and needls itching feet, ect... Just the past few weeks though its been gradualy getting worse. My feet don't feel like I've been resting them for days like I have bee instead they feel like I just took a 10 mile hike on a hot side walk in my bare feet, I had to call off work for tomarrow because my job requires me to be on my feet all day and I just can't do it. After several calls to my dr. he uped my prednazone. I'm so frustrated finding this message bord today and seeing that other people are going through the same thing helps. I wondered if anyone else is on an imuneigloben i.v. treatment because that is something my dr. has said he wants to put me on , but it hasn't gone through my insurence yet. Also does anyone have exztream tieredness/passing out? I've even fallen asleep driving I never know when it will hit. I also have trouble focasing my eyes and have momentary blackouts and trouble thinking that I never had before. I have icecream headaches with out the fun of icecream and drop things ,have random twitching, musle spasams, burning itching stabing ect... its all pretty overwelming.

 
Sponsors Lightbulb
   
Old 07-30-2008, 06:46 PM   #2
Newbie
(female)
 
Join Date: Jul 2008
Location: Canada
Posts: 8
suewatters1 HB User
Re: need advice on meds. and how to deal with symptoms

If I were you I would try the IVIG. I had 5 days of it last year and 5 days of it this past January.
Prednisone is serious stuff. I was on it last year for a hearing lost now nobody wants to give it to me for my tendinitis. Most people I talked to on the GBS/CIDP board would say use prednisone only as a last resort.

I have you had an EMG yet? Where they put thing on your legs and hands and feet to zap you to see how the nerves are working. By that they can tell if you have GBS or CIDP but since you are getting worse it could be something like CIDP. I would find a Neurologist as soon as possible. Also if you get real bad go to the emergency room. If you get to see a Neurologist he might want to do an Spinal Tap also called lumbar puncture. Because if you have elevated proteins of over 45 it most likely be something like CIDP.
Regarding pain You can take up to 3600mg of Neurontin in a day. Some people on my other forum says even higher if you had too. The fatigue is part of having a Neuropathy disease. Before you took sick did you got a vaccination like a flu shot or got sick real bad. Because that is some of the triggers. I had a flu shot within 7 weeks I had a hard time to feel the gas pedal while driving. CIDP is chronic affecting both sides at the same time when I first start having these symptoms.
Fatigue is one of the worse side affects of my disease and I thinks most Neuropathy disease or any inflammatory disease.
As a old friend use to say rest, rest and more rest if it takes more then 12-18 hours to recover from any activity then you are doing to much. Then the next day or days you pay for it.

Good luck keep us posted.

Sue
__________________
Sue
From Cornwall Ontario
With CIDP, Chronic pain, ADHD, Severe anxiety, Depression and Hearing problems

 
Old 07-30-2008, 07:06 PM   #3
Junior Member
(female)
 
Join Date: Jul 2008
Location: brilliant,oh,usa
Posts: 10
ravenfey HB User
Re: need advice on meds. and how to deal with symptoms

What is cidp? I did have the emg, it was the worst experience . I had been doing better thanks to the first dose of prednazone untill that emg. After I left my leghs wouldn't quit tingling and shocking me and my legs got weeker and weeker till he had to put me on another dose of prednazone. I am seeing a nerologist, but he is so hard to get into, he's the best in our area, but has more patients than he can handle. He just uped my prednazone to 60mg every other day and put me on Tegretol today along with the neroton. The iv treatment he wants to put me on is one that you get every other week in your home and takes 3-4 hours. does anyone know anything about that type of iv treatment? My mom takes it for ms and she hasn't gotten better, but right now she is so bad we are just happy the steady progression of getting worse has stopped. As far as the tierd it really scares me how I fall asleep with no notice , its hard not to wear myself out because I have two young girls. I already dropped my schedual at work from 5 days to 2. I called off for today because I was about in tears just from standing long enogh for a shower. I plan to start the tegretol tonight. does anyone know if that will help the pain in my feet and legs. I'm really hopeing to go to work tommarow.

 
Old 07-30-2008, 07:17 PM   #4
Newbie
(female)
 
Join Date: Jul 2008
Location: Canada
Posts: 8
suewatters1 HB User
Re: need advice on meds. and how to deal with symptoms

CIDP is Chronic Inflammatory Demylenating Polyneuropathy. Did he say what kind of Neuropathy you have? Did he do a spinal Tap?

( removed )

IVIG is Intravenous Immune Globulins. You get a 5 days of a loading dose. 2 grams per 1 kg of body weight. I had 25 grams per day for 5 days. Some people after the 5 days they get some more as soon as they get worse again so it becomes a mantenance doses. On my other forum they are experts on IVIG and pain they would be able to help you also. Consider joining to get more information to help you make a diagnoses to discuss with your DR and how to manage your treatment.

Sue
__________________
Sue
From Cornwall Ontario
With CIDP, Chronic pain, ADHD, Severe anxiety, Depression and Hearing problems

Last edited by moderator2; 07-30-2008 at 08:24 PM. Reason: posted disallowed website(s)

 
Old 07-30-2008, 08:18 PM   #5
Junior Member
(female)
 
Join Date: Jul 2008
Location: brilliant,oh,usa
Posts: 10
ravenfey HB User
Re: need advice on meds. and how to deal with symptoms

I will look into all that hopefully it will help. thanks for the info. I have not had a spinal tap. I've had emg, mri, and too many blood tests to count. He told me peripheral sensory neropathy and that it's progresive. He also says its hard to say what caused it, I don't have diabetes though, so it's definatly not that kind.

 
Old 10-27-2008, 08:01 AM   #6
Newbie
(female)
 
Join Date: Oct 2008
Location: Zeeland, MI USA
Posts: 3
gracie1402 HB User
Re: need advice on meds. and how to deal with symptoms

Hi, I hope you don't mind me jumping in here. My daughter had GBS at age 4 1/2 (in 2005). She was 100% paralyzed with in 24 hours. She was in awful pain, we couldn't touch her for almost 2 weeks. We spent 3 months in the hospital and another 2 years in rehab. Ok, I say all this to say, things looked really overwhelming and hopeless for her BUT today she is walking, running, playing, and even doing cartwheels!
She had the IVIg treatments (she had to be in the hospital for them because of her age/condition). The first treatment went great with much improvement. The second treatment though, she had a meningitis reaction which was not dangerous just VERY painful. By the third treatment, it was so severe she can not have the IVIg anymore. If you are prone to headaches, tell your doctor and he can order steriods to administer before the treatment.
I will pray you get some relief. Cronic pain is no way to live.
Oh, and I know one of those meds. you are on cause depression as a side effect. You may want to ask your dr. for an antidepressant, it might help with energy and even pain.

Take care,
~Gracie

Quote:
Originally Posted by suewatters1 View Post
CIDP is Chronic Inflammatory Demylenating Polyneuropathy. Did he say what kind of Neuropathy you have? Did he do a spinal Tap?

( removed )

IVIG is Intravenous Immune Globulins. You get a 5 days of a loading dose. 2 grams per 1 kg of body weight. I had 25 grams per day for 5 days. Some people after the 5 days they get some more as soon as they get worse again so it becomes a mantenance doses. On my other forum they are experts on IVIG and pain they would be able to help you also. Consider joining to get more information to help you make a diagnoses to discuss with your DR and how to manage your treatment.

Sue

 
Old 10-27-2008, 10:00 AM   #7
Junior Member
(male)
 
Join Date: Oct 2008
Location: Virginia
Posts: 11
JoeGallsr HB User
Re: need advice on meds. and how to deal with symptoms

I had the same pains Doctoer put me on Lyrica , I take 400mg a dy it works great .. I was on Gabapentin it was so so . The nervices in my legs and feet are in poor shape used to hurt so bad I got no sleep.. Ok now on pain but since got charcots joint watch out for that its no good

 
Old 11-06-2008, 08:19 AM   #8
Junior Member
(male)
 
Join Date: Oct 2008
Location: Virginia
Posts: 11
JoeGallsr HB User
Re: need advice on meds. and how to deal with symptoms


Sue, thanks for the good advise. I have had all of the test you talk about .. I just got Charcots Foot also .. That has slowed me down alot.. Do get depressed now, but try to stay active to some point . I've been on Lyrica (200 mg ) 3 times a day that helps but it does make me sleepy.

Thanks,
Joe G

 
Old 11-06-2008, 08:27 AM   #9
Junior Member
(male)
 
Join Date: Oct 2008
Location: Virginia
Posts: 11
JoeGallsr HB User
Re: need advice on meds. and how to deal with symptoms



Been going thru this thing for a while now. I take Lyrica (200 mg ) a day that helps my pain in the legs. I walk fair , play golf that must help. You are taking care of yourself very well. Don't let this thing beat up on you Get Happy thats my get up deal but its hard . I get down a lot thats why I am writing this..

Good Going, Joe G

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
CONFUSED with THYROID readings?? I need help? meds do nto seem to be working? bluetou Thyroid Disorders 17 05-12-2011 08:18 PM
Nortriptyline and low body temp, lightheaded etc need help... DPalmacci Depression 2 04-25-2010 09:45 AM
New medication...need information and advice rich57 Pain Management 70 07-21-2008 04:38 PM
New here & in desperate need of help!!!! momof2blessings Back Problems 9 01-21-2007 12:32 AM
Need help asking for meds from new doctor! jealibeanz Anxiety 7 05-05-2006 06:05 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 04:51 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!