Oh yes, more neuropathy questions and this seems to be the place where I have received many good answers (certainly not from the doctors). I have developed a shaking that kind of comes over my entire body but I feel it the most in my arms/hands and sometimes my neck. I usually take 1/2 a mg of clonazepam at bed time as I have for many years. Now however, I break it into 4 parts and take one section after I get up and it really helps the shaking after about 20 minutes. I take another at lunch, one in the late afternoon and the final one at bed time so I am not taking anymore of the med than usual, just spread out. If I am dealing with neuropathy could this be causing the shaking? I also some mornings wake up and the bottoms of my feet are very tender and they feel bruised when I walk - does this also sound familiar. Yesterday my lower legs felt like I had shin splints they were so sore. I have an appointment with a neuro in Seattle the end of September and hopefully I can find out more. I am now down to 20 mg of pred (dropping 5 mg a week) and the rhuemmy said we will stay at 10 mg until my Seattle appointment. Just more questions, but those who have dealt with stuff have real life answers.
trc, for what it's worth:
I have profound PN, I walk badly with braces.
Recently I developed essential myoclonus. It only happens when I stand up and walk, not when I'm sitting, lying down or sleeping.
It only developed seriously about 5 months ago. I have had profound PN for 6 years.
Hugs, Elaine
So sorry about the myoclonus, that can't be any fun. My shakiness happens with activity and it really effects my hands the most - but it does respond to the clonazepam. I can say that my autonomic stuff has improved a bit - going to the bathroom more regular now which is a great blessing. However, the rheumy has had me start up the cellcept again and it just makes me badly constipated and I don't care for how it makes me feel either. We will try it again though. Hope for a good night for everyone.
I am going to mention something that is probably not related to your shaking at all, but I feel I would be remiss if I didn't say anything. Sometimes when a person has been on a drug like clonazepam or Xanax, or other meds of this type, we can develop a physiological need for the med. This means that the body is used to having a certain blood level and if we don't sustain that level certain symptoms can occur.
Shaking is one of these symptoms of the bodies need to have a sustained dose. I went through a taper many years ago and had this shaking. It was relieved by the addition of very minute amount of the med I was tapering off of. We don't plan on our body getting dependent on one of these drugs, but it can happen. This is not the same as a psychological dependence on a drug.
I wanted to take the time to mention it here as there may be someone who is having some issues and just can't nail down what is going on. We can't always depend on our doctors to catch on to some of our issues so we have to help each other.
This is probably not your issue but just wanted to mention it. Hopefully you can find some help for your neuro stuff. Thanks and good luck. Irish
Thanks for the input, it is appreciated. The clonazepam doesn't increase the shaking, it stops it which is a big help. The only difference now is the I am spreading the same dose out over the day. I started back on the cellcept and unfortunately I am one of the people that experiences nervous and anxiety on it and that can't help. Although those symptoms aren't common my rheumy says they are indeed possible in some people. The hope is to get my appointment in Seattle moved up so we can get a better idea whats going on and how to treat it. The neuropathy rheumy here has just referred and EMG and that is what is missing right now. He has not been helpful at all.
The EMG will tell you if nerves and muscles are involved. I've had two EMG NCT and they are very easy for me (a sort of buzzy shock which is a 'surprise' but doesn't hurt...but I have a very high tolerance for pain).
If you have shaking of your hands it could be essential tremor, too. Lots of possibilities and you need a neurologist for this, rheumatologists really aren't trained for these things.
Keep us posted. It's no fun. Try How to Be Sick, by Toni Bernard, start with chapter 3.
Regards Elaine
Starting my school year next week but am trying to stream line my days so I don't overdue. Before I signed my contract I made it clear that I had to miss two days towards the end of September for my appointment at a neuro - muscular center in Seattle where I hope we can get some good answers. The neuro here won't do an EMG so we are going to where people might be more cooperative. There is an answer, we just have to find it.
Quote from: trc1962 on August 24, 2016, 02:20:53 PM
I also some mornings wake up and the bottoms of my feet are very tender and they feel bruised when I walk - does this also sound familiar.
I get that sometimes, especially from gluten.
I try to be super careful with gluten, but I am noticing that even G free foods contain trace amounts of gluten, which is something us very sensitive people just cannot have. My thyroid has been haywire for over a year with no treatment as they weren't factoring in that I wear an estrogen patch and that evidently boosts your thyroid hormone reading. My endo gave me levothyroxine and said you can take it or wait until you are off prednisone and being that the taper is slow, I am tempted to maybe try it and see if my fatigue improves. We will see what happens.
TRC: since you are taking two days (maybe +) for your neuro appt, it might pay off if you do your own google searches. I say that as I have had neurological implications, and if it had not been for my neuro asking more questions (than the ones I went in to present) I would have not received the dx which was a missing key to my health symptoms. It had/has nothing to do with SjS. Mine had nothing to do with tremors btw.
I say this as another condition which causes essential tremors is ataxia. I just happen to know ataxia as part of my educational background.
Since you work in a school, it might behoove you to ask the OT and PT at your school...and just mention it to them. They may know if they might know any other questions to ask a neuro.
I suggest this since you are taking so much time for this appt, I would want to inquire about every possibility. You may not be as lucky as I was...and find an inquiring mind instead of rushing thru an eval.
Good luck...on your school year....and on your appointment. The unknowns can wear you down.
Sjoldier c3