Hi Barb, I have the temperature problem too. My doctors say I am going into menopause and that is why my temperature goes from normal to hot in seconds and many times during the day and night (worst at night). But I did not start having this problem until I got CIDP. But it could be that the stress of the CIDP has sent my body into an early perimenopause - i am at that age. But it is horrible. I can't sleep at all because my body goes from normal to HOT over and over during the night. I have to get up out of bed and walk around, go down stairs and stand in an open doorway (I live in MN and the air outside is very cold at night). But the cold air is the only thing that will cool me off. But then I am wide awake. I get worried because I am not sleeping anymore more than a few hours here and there so my body probably is not getting the regenerating rest needed to fight CIDP and stay healthy.
Aw Jane, I read this and felt so bad and then when I looked.up and saw it was you, I felt even worse! My friend, I so know how you feel. I had a tough couple of years. I had been in chemical menopause (drugs like Lupron) since I was 36. I had endomitriosis pretty badly. Then last year, even that failed to work & the pain became unbearable. So I had a total hysterectomy. Dr put me on very low dose estrogen (1 mg Estrodol) and said it wld be safe. I sure hope so. If you are wary.of estrogen, my friend swears by Estroven and Estroven PM @ night. The pm helps her sleep & she no longer has night sweats. If you google natural menopause, there are herbs too like milk thistle. Hope this helps. jojo
Hi - I hope you don't mind me interceding, but I have CIDP. I decided to try and do something positive to help others, by creating an independent web survey:
http://gbs-cidp.questionpro.com/
It is my attempt to learn more about GBS/CIDP and then publish the results so that more information is available for others. If I just help one person get diagnosed sooner I will be satisfied. So please fill in my survey, it is important to me.
Thanks Drew
Hi My Name is Phil (Canadian) and Im 55 yrs. Now lookin back I had warning signs as a child. I was allways un-coordinated and clumsy, with bad sense of balance. I worked hard to ride a bike with no-hands , but could never do it like all the other kids could.
When I was around 10 doctors were noticing that I didnt have proper reflexes, and they would keep tapping my knees with a puzzled concerned look, and I thought this was fun, fooling the doctors, but they said nothing.
Then when I was early 20's I got Bells Palsy (where half of the face nerves dont work to move the muscles) and half the face appears frozen. A doctor who was treating me at the time said I would have nerve problems later in life, but I didnt really believe this as I had a good fast recovery (about 6 mos) About 15 years later my Dad got it In a worse case that took him more than 5 years to get his face muscles back. So this came from his side of the family
Then when I was about 40 I started to get burning in the soles of my feet, and assumed that it was caused by standing on concrete all day at work. I started seeing a Neurologist who gave me frequent EMG 's and seemed worried, but would only say I had progressive nerve damage (legs and feet), but he didnt know why, and that there was nothing that could be done. I saw him periodically over 4-5 years, but no new news, so I believed that if anything could be done he would know.
Then I started getting burning in hands and balance deteriorating and fatigue, and I started asking my GP more questions and my Neurologist and started pushing for a second opinion. So at around 45 the slow onset was getting more rapid They did book me in to another Neurologist, but appointment was 6 months away and I started going downhill faster, and continuously asking for appointment to be moved up, but to no avail
When I finally got my appointment, The new neurologist was very good and knew I had CIDP within 5 minutes, and started me on IVIG
Improvement was slow but steady and after a moth and a half I knew It was working. I have a lot of permanent nerve damage, but I can walk short distances and live a pretty good life, being in artificial remission
About 4 years ago I started relapsing and the Neuro put me on a 4 day consecutive IVIG and started me on Prednisone. I weaned down to a low dose of prednisone over the next year, and kept stable until last fall, when I started relapsing again. He put me on a 4 days of IVIG and large dose of Pednisone again (60 mg. a day)
I have weaned down now to 30 mg/day and am back in artificial remission
Also looking back I can guess at some contributing factors that gave me increased odds of getting CIDP
Lack of sunlight I have always avoided sun having sensitive eyes and skin , and have read a couple places now that doctors are noticing a higher percent chance of getting M.S. related disorders in Northern areas where sunlight is weaker
Lack of Fish I have been allergic to all seafood from age of7
Exposure to chrome. As a Tool & Diemaker I was machining high chrome steels for 30 years
Hereditary Both parents had Nerve problems
Warning signs as child
Well I think that about sums it up
Good Luck all !!
phil
My first symptoms were a sore right foot, kinda like a stone bruise and a stiff right hand that I thought was arthritis due to my occupation as a professional seamstress. This escalated to severe pain in both feet and unable to use my right hand. Then came the face numbness and slurred speech. I am currently in a wheel chair due to weakness in both legs and balance problems and am awaiting results from my spinal tap and then treatment.
Isn't it interesting how long or how many tests it takes some of these doctors to diagonize us. I just ask for and got my last EMG from a MDA clinic here in AZ. I am surprize....by the interprestation and summary:
It says some things that don't make since, that I have not included here, then others that maybe does....does it answer if I have CIDP....not yet as I see it. but maybe on the edge?
What it said: is the inability to activate mucles of the lower extremity distal to the knee which may be related to a disorder above the level of the anterior horn cells ( such as myelopathy, etc....) given the normal motor nerve condcution studies and lack of abnormal spontaneous activity in those areas. I cannot rule out the possiblity of chronic denervation in muscles where motor units could not be activated.
That is the interpretation. but I guess not my last.
thank you for letting me share here, and reading.
ruth h.
Well, that is a harder question than you might think. The thing that put me in the hospital was extreme weakness in my legs, to the point that I could barely walk, or even stand up. It was as a result of those symptoms that I was diagnosed with CIDP.
However, for about a year before the weakness I had pain, numbness and tingling in my lower legs and feet. At the time they thought I had a pinched nerve, but the usual treatments for pinched nerves did not help. Now, I am sure that these were actually symptoms of my CIDP.
But, even before that, I had a series of issues that I now think were from the gradual onset of CIDP. I had real problems with fatigue - I would get so tired in the afternoon that I could barely keep my eyes open. I also became clumsy, and would constantly trip and stumble. These came on gradually for several years before the more serious symptoms. Although I have no proof, I believe that the CIDP was 'stewing' in me for several years before it finally became really serious. The problem is that these symptoms are so vague that no one would ever think to connect them to something like CIDP.