Cold weather and muscle weakness

wow, it’s like I wrote this question- no replys yet? In fact I see my neurologist with the same question next month, and promise to to

It’s normal to experience some variation in your perceived strength for various reasons. The only thing that matters is whether a loss of strength is real and persistent, which would be an indication of loss of myelin. Your neurologist is the best person to evaluate this.

Hi, I have MMN and yes, I deteriorate considerably in cold weather. In fact, any time I have deteriorated, was in the winter. My MMN also started in the winter, or at least that’s when I noticed something was wrong. Many people with MMN do report getting worse in cold weather. Well, my hands just get unusable, and it’s not even so cold where I am now (Greece), but it’s too cold for my condition. Maybe it is similar with CIDP. See how you can keep yourself warm. For myself, I will be maybe the only person around going out with hand gloves, starting from tomorrow. There is not much else I can advise, just keep yourself warm if possible. Unfortunately, I didn’t get better in the spring, but that may be because I didn’t receive any treatment, being undiagnosed until only 2 weeks ago for several years.

Hi Bob,
Yes cold weather is a killer for me also. My hands quit functioning when they get cold to the point I can’t even work a zipper. Has something to do with the loss of milan and tissue which protects the peripheral nerves. Once I get my hands warm again, the function returns. Do as much as you can to protect everything from the cold.

I was diagnosed with GBS in 1981. I was lucky enough to be accepted into the experimental plasmapheresis studies that proved to be successful for a treatment instead of the high dose corticosteroids (prednisone, etc…) which tended to make things worse and have horrible side effects. I’ve insisted ever since that I can tell when large low pressure gradients like cold fronts and especially tropical and nor-easter type systems came close to me. I’ve told people days before it was going to rain, just by the pain increasing in mainly my feet (they never recovered completely and I have dealt with pain in them always). The pain always gets worse a couple days before rain and continues through until the front passes. Winter time has always been hell for me. I complained since the early ’80’s of my problems noted. The doctors didn’t know too much about GBS and it’s variants then. I’ve noticed that most people tell me the same exact thing on the boards. Winter (cold weather) does seem to make things, especially pain, much worse than any time of year. I’ve though seriously of moving to a climate that doesn’t have “seasons”, just to avoid winter. So far I’ve just grinned and bared the pain. I can’t tell you the times I’d be curled up in tears because my feet hurt so bad. Although there are many treatments for the chronic pain that can come along with the residuals. I still have those horrible days of pain that I just sometimes can barely take. Opiate narcotics I’ve found have little to no effect on the neuropathic pain. I have found a new one that does seem to offer significant relief. Getting your insurance company to cover it is a different story. Nucynta, which is the active component that your liver turns tramadol (Ultram) into seems to have great effect. It’s very pricey, but if you can afford it or can get insurance to cover it you might give it a try. I only take it during the extreme days, because it is addictive like other narcotics. Demerol and methadone, I’ve been told has similar effects but, not as strong as Nucynta. Not everyone can take methadone or Demerol either. I know Demerol really messes up my senses, and I definitely can’t drive on it. Nucynta, I personally, never found any “euphoric or other mind altering side effect” like the others. I hope this helps. I am taking the highest dose of Lyrica and I can’t tolerate Cymbalta. I did find that Brintellix had a strong effect on the chronic pain after trying it as an antidepressant. It is not listed for use in neuropathy, so it would need to be prescribed for depression. It is worth a try if Cymbalta or High dose Effexor aren’t tolerated. I hope this is of help to you and others that are seeking help in residual pain.

My pain is more intense in my hips & thighs when the temps drop suddenly. I am in TX..so that happens quite often. Prayers for you!

Yes, when I get cold my hand seem useless and toes too.. hot hot weather isn’t good either though.. Thankfully it is usually quite mild here.

Just diagnosed (12/2016)

Is there anybody getting IVIG, with an Aetna. I have the “top of the line” coverage HSA.
I feel, Aetna is wasting my valuable time.

I have just been denied IVIG, Depressed about Suffering through yet another Pennsylvania Winter. My hands and feet ache when cold. I am in the currently in the appeals phase with Aetna. My doctor and myself are both disputing the treatment rejection.

I have gone misdiagnosed for over 5 years so, I am in pretty bad shape. My hands nerves are just in the beginning stages of demyelination. Both my feet are a lost cause, have the feeling of duct tape on my shins, and good deal of mussel weakness in both legs.

My fear is largely that the same thing is happening to my hands. I have buzzing and numbness in my thumb and fingers. It is mild in comparison to my pretty much useless feet and legs.

Is there anybody getting IVIG, with an Aetna. I have the “top of the line” coverage HSA.
I feel, Aetna is wasting my valuable time.

The cold is making my situation unbearable. 1200mg Gabapentin 3x and 75mg of Nucynta. I have been out of work since July 2015.

Any help with getting Aetna to play nice would be greatly appreciated. I am seeing a new Neurologist. His Name is DR David Tabby DO, of Optimum Neurology. Dr Tabby is convinced I have CIPD, It is the my insurance carrier, holding things up at this point.

P.S.,
Any help would be deeply appreciated.

Aetena’s current criteria for pre-certification of treatment with IVIg or SCIg can be found here:
http://www.aetna.com/cpb/medical/data/200_299/0206.html

Your Neurologist must show you have either GBS or CIDP to be pre-certified. Use of the proper ICD-10 coding can help get your prescription approved as medically necessary.

A list of the IVIg brands that are covered are here:
http://www.aetna.com/products/rxnonmedicare/data/2013/MISC2013/ivig.html

Good luck.

I have had difficulty in weak muscles speasaly in my feet and it have getting worse last couple weeks and muscle spasms have getting worse too the weather have been very unstable cold and raining or snowing. I’m worry beacouse I have had hard time standing up.