NeuroTalk Support Groups - Any one have the PN, "MPFS"?

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- - Any one have the PN, "MPFS"? (https://www.neurotalk.org/peripheral-neuropathy/18776-pn-mpfs.html)

Megan I can relate to the stiffness. In the very beginning that was my primary complaint. I did not have fasics when I first went to the doctor. They developed later.

It may pay you to go back to your doctor and make sure he knows about them as they are caused by something. Fasic alone would not worry me but the stiffness combined with fasics and fatigue do. There are a lot of conditions that are treatable and curable and you need a complete workup. I spent a year being examined for metabolic and other curable diseases before they decided mine was not curable. Yours may be so I would definetly investigate it. They may want to do another EMG to see if there are any changes from the first which of course there are as the fasics are new.

Cycleops you are a wealth of information and are very helpful. Sometimes I think you have ESP or something. I am taking Beta-blockers and alphablockers for blood pressure problems. I have heard that Beta blockers help with some neuro conditions but I just cannot tell the difference. I also take a antidepressant for the sleep problems. I have tryed the anti-chlorgenic also. I take remeron which has a histamine effect of some kind. Ambien also works great for me.

You are also right on with the attitude change and where I thought I would be at this point in my life. Big change. I should be having my mid life crisis and be out buying sports cars and looking for a young girlfriend but instead I am in the store looking at which cane I want to buy.

I also have a template for how my disorder is going to progress. I just took my father to the doctor and for the first time I had to pick his leg up and put it in the truck for him. He could lift it up but not far enough to get it in the truck. He also fell the other day and it took me about thirty minutes to get him up. I know this is what I have to look forward to. But I just have to believe there will be a cure before then. That is what keeps me going.

TL

I don't know why this didn't pop into my head a while ago...have you looked at Rippling Muscle Disease? Autosomal Dominant, seems to fit a lot of your symptomotology certainly better than the MPFS. Take a look See my PM on the ESP reference....you are not the first to mention that, LOL....

Here is just one reference, however, google it and a lot will come up. I did find, one immune mediated

I always feel better when I find an immune mediated reference, as I wonder if a course of IVIG would work....??? Long shot, but, worth a try.

see

http://www.ncbi.nlm.gov/pubmed/11353417

Megan

You need additional testing, which in Australia seems a bit difficult to get. Try to find a neurologist you can trust, stick with him/her and work together. As soon as skin biopsy for nerve fiber density is available in Oz, try to get that. My other suggestion is to ask for a betablocker....it just may knock down the fasciculations....which forgive me, I have to abbreivate as fascics...

That last thing you posted for TL would not show up,on my computer..
C my son Ryan the oldest,is a massage Theratist and the insurance
compaines are finally starting to pay..He taught Bob to not rub the
calves but have someone kneed the calves light when you make home
made bread,not real hard but not gentle right in the middle..You will
fell it in the calves and the feet,sounds odd but it really helps...

I get the spams now between the wrist and elbow area. I think so many
of us say we are fine when asked,it's hard to explain,many don't want
you to go into details ,and your friend is afraid for you..I remember
lifting my mother legs up in her 8o's..I'm 61 and I can get my rear on a
bed or car sit but a darling 78 yr.old friend must lift my legs..

C I have a friend with Lupus who just got fitting for calve braces,she
is also blind. She is walking ,and her Lab is very happy,because no more
pulling a wheelchair...Hugs to all Sue...We don't even have a
commercial on the TV...My 92 yr old Aunt well her Cardiologist told
her she had PN,he's helping her the Neuro in that town would just put
her on something that would make her fall. I tried a Lidoderm patch
on my calves the other night it helped,but after 3 years of my Neuro
begging I finally gave in to morphine 1 at night,nurses fight meds,but that has helped and 3600 nurotin..I wish it would stop snowing so I could
get some new glasses bare with me,and I wish I could get in a tub
Oh how good that would feel,but after that last fall,forget it.

Quote:

Originally Posted by TLSMITH (Post 220051)

I have been diagnosed with muscular pain fasiciculation syndrome also. I was diagnosed at Emory University. I have cramps and painful muscles. My father and several of his uncles have become crippled in their fifties along with two cousins of his. Thier grandfather was also crippled. I began having muscle problems in my mid forties and have the same beginning symptoms as them. The legs eventually become mostly paralyzed. I have been unable to work for the last three years and am pursuing SSDI on the advice of my neurologist. My neurologist just says I have a unknown neuromuscular disorder probably familial. He sent me to Emory and they diagnosed me with the mpfs and said that it wasn't hereditary. I think maybe the mpfs is just part of my problem.

My main symptoms are that I get extremely sore with almost any activity. My muscles cramp easily and even holding the steering wheel or a computer mouse hurts. I also get stiff as a board especially in my legs.

I do have a lot of fasics but they really don't bother me. The Dr. at Emory tested one calf muscle and then diagnosed me with that. When I told him about the stiffness he said you don't look stiff to me. I have six male family members with the same symptoms as mine but he said mine was not familial.
I also was tested at the medical college of georgia but they only came up with a inherited muscular disorder unspecified. So yes I have been diagnosed with it but I really am not sure what to think about it.

I think we may have the same dr at Emory --- going through very similar symptoms right now, esp. the stiff as a board. It's as though he doesn't believe that there's something wrong w/me, other than PNH. Can't work, can't function, and growing more hopeless each miserable day. Are you still at Emory? What was the dr's name? Any new news w/you? I sent you a private message w/my number, if you don't mind calling.