Peripheral Neuropathy/CIDP

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Rolesy
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/17/2011 9:30 AM (GMT -6)   
Hi, I'm new on this board or rather in this "chat" environment.  My husband is reaching his 4th year of Peripheral Neuropathy, which is not a disease that is mentioned in the Content section.
 
It is a painful syndrome that affects the sheaths on the nerve endings, causing pain, numbness (yes all mixed up and complicated) burning sensation, and also a feeling of the feet are being stabbed with broken glass.  I has progressed from the feet and is now just over his knees.  Also in his hands which is not progressing thankgoodness as quickly as his feet and legs.  Because it is the Pheriperal nerves in the sytem it also affects his balance.  His diagnosis changed mid last year, to CIDP, Chronic Inflamatory Deyelyminating Polyneuropathy, which is a more aggressive neuorpathy.
 
We have been in the hands of a Pain Management Centre attached to a hospital, so he has been on a lot of meciations and still is.  He had needles inserted during a proceedure into his Ganglion Nerves which only eased pain for a couple of days.  Next it was a Neurostimulator implanted in his gut and wired up his spine and a remote that he could activate himself according to his pain levels, it was quite a success for a few weeks, then an infection set in and everything had to be removed.
 
Now we are with another new Neurologist who has diagnosed the CIDP, and confirmed his diagnosis with electrode conductivity tests.  He has had one Polygam, and infusion of cleaned plasma that helps to stop his antibodies fighting each other.  He is supposed to have had a 2nd infusion 6/7 weeks ago to follow up on his first treatment, this has not happened yet.  To be effective it should have been done within a month of the first.
 
This illness the same as any of yours has changed our lives, we cannot make any plans because good days and really bad days don't give us any notice.  We are also tired of being on the trail of different specialists one after the other (and it's expensive) !!!!!  However what can one do but keep trying to find, not a cure anymore but a treatment that will help.  I wish the same for all of you.
 
PS Peripheral Neuropathies can be the result/side-effect of Diabetes, Cancer Treatment, Lymes Disease,Heredartary, Guillane's Bar disease, exposure to Toxity, and many more that I can't come up with right now, my husbands is Idiopathic, which means cause unknown.
 
Rolesey
 
 

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/17/2011 9:51 AM (GMT -6)   
Welcome to Healingwell Rolesey. I'm sorry to hear that your husband is suffering. Even though we do not have a forum for this specifically, we do have a Chronic Pain forum that you might find interesting. You might even find someone on that forum that shares the same thing as your husband.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
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McBarker
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/16/2012 2:27 PM (GMT -6)   
Has anyone any knowledge about Thiamine (benfotiamine) and Methyl B-12 for peripheral neuropathy? I have been taking these capsules for 6-weeks or so, with increasing dosage per instructions, but have not seen much relief. This neuropathy is associated with diabetes, although my current diagnosis is "pre-diabetic" and my blood sugar is under control by medication.

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 5/15/2012 10:59 AM (GMT -6)   
I am sorry your father is just exactly like mine. Its amazing that you have written it down so perfectly. I have had it approx. 8 years. It has started in my hands, finger tips are terrible. I take 3500 mg. of gabapentin a day. Also, amitriptolene for sleep as well as pain. I have spasmotic dysphonia, (voice box), another symptom of neuropathy. My speaking is so bad I just feel even more enclosed from the world. I cannot think right. I cant get the words out. Its my memory is just horrible. It has taken me 15 minutes to write this. I have so much sympathy for your dad. How old is he? Im 61, but feel and look 81, my moms age. I take 5 meds for the neuropathy. Im sure that they are part of the reason for memory loss and speech difficulty. I had every test you can think of, to no avail. Since my symptoms are in my hands now I worry about pain starting in my head, the same neuropathy as feet. I will remember him, and of course you. Caretakers, which is what I used to do before this hit me. I know the exhaustion of that job. I thank goodness for this forum. I visit it several times a day when I can. Its helps so much.....with best regards..Cathy
I am 61 years young. I have neuropathy in both feet and hands. I have spinal stenosis and arthritis in my back. I am bipolar and with panic attacks. I cannot walk. I choose to stay home all the time. Now I have new diagnosis, skitzophrinia.(cant spell).

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 7/8/2012 4:48 PM (GMT -6)   
Hi Rolesy, Are u still hanging out here? I just read your first post over again. I have experienced everything that you wrote, plus some. about 2 months ago I was diagnosed with diabetes. No blood test ever showed it, this reading came from sugar in my urine, count was just under 500. I started meds for that and I decided to get off sleep meds,since the elavil that I take, along with gabapinten at night knocks me out pretty well. I also decided to get off effexor, since elavil is given for depression too. My doctor agreed, said it sounded fine to her. One that works for me regarding anxiety, ativan, totally relieves the feeling of a panic attack all my waking hours. Only .05 mg times 3 a day. My panic makes every bit of my pain worse too....I hope your Dad is better. That stimulator that was put in spine was a nightmare. Does he have ringing in his ears? mine just scream at me all day. I do have a great pain doctor,who shares with my other docs too. By the way, my mom just went to her new urinology doctor at U of Arizona med, school. He was so very concerned that she had been taking elavil and ativan at nite. He told her that givin together to a heart condition patient is a sure fire Heart Stopper, those were his words"heart stopper". SCARY. My mom has neuropathy in her pelvic and colin and rectum. Bless her heart she has such pain. She has RA and along with she has Sjogrens syndrome. Her kidneys and other organs are so dry. She has no saliva at all, and no tears. I must go and call her. We email and talk all the time. Hope all is well with u, a caregivers job is a disease on its on. It drags one down terribly. She is a fighter tho, her mind better than mine!
I am 61 years young. I have neuropathy in both feet and hands. I have spinal stenosis and arthritis in my back. I am bipolar and with panic attacks. I cannot walk. I choose to stay home all the time. I love living in the country. Its very peaceful.

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 7/9/2012 10:31 AM (GMT -6)   
CORRECTION I made a mistake about my moms meds. Her doctor told her the elavil and ambian taken together is a mix for HEART STOPPING for anyone with heart problems. My mom had a quadruple bypass. She has left main disease. She never new she had heart problem until the heart attack. The meds that we all take can be as bad as the reason we take them. It is up to us as patients to research the affects of medication and how they might react when taken together. i just wanted to correct what I wrote.....Hope everyone can have a better week this week....Cathy
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