Calf muscle and buttock wasting on right side constant muscle twiching

Hi Ellen. It's nice to make contact with you. I'm feeling constant muscle spasms in my right thigh muscle and bum cheek. Do you get this feeling also I've been to see neurologist in hull he wants EMG testing and a blood test was taken last week For an autoimmune screen.anca. And serum electrophoresis My family get sick of me mentioning how my leg feels but omg doing my head in. I don't know if it's best to excersise more or try rest it. Problem is I climb as part of my job as telecoms engineerI hope you get diagnosed soon sounds like you've had a lot of tests etc you obviously live up north I'm 50 in January My worry is if I've got a genetic problem as my grandma and my mum both had nerve problems. I have started to take b12 tablets which has made my leg feel less numb. regards Terry.

Hi Terry

I live just outside of Blackpool, the first neurologist I saw here in Blackpool, I was then referred to Manchester and now I have recently been referred to professor Volka at Genetic centre in Newcastle. Everyone I have seen have been sympathetic and taken me seriously ( like you said I think people think we are moaning) it's good to be finally told it's not all in my head!. I have had a few blood tests to check CK levels as apparently this rises with muscle breakdown in muscular dystrophy. Mine is only slightly raised. My muscle biopsy also didn't go along with the muscular dystrophy line of thought but my EMG does, it showed several abnormalities. The MRI scans were quite abnormal and surprisingly my left calf also showed signs of muscle wasting even though I hadn't noticed anything myself! Part of my hamstrings in both legs are also affected.

My doctor put me on ferrous sulphate which I take every morning. 

The Professor at Newcastle explained that some of the symptoms of channelopathies ( muscle stiffness) can be improved with exercise, warm up phenomenon . I enjoy spinning/ cycling and find whilst I'm exercising my stiffness goes away but as soon as I "cool down" it comes back with a vengeance ! 

My GP prescribed Amytriptyline which I take at night, fantastic ! Before I started taking this I couldn't sleep for spasm's in my legs / restless legs now once I've taken the Amytriptyline I can get a reasonable amount of sleep. 

Exercise definitely helps me and I sort of feel I'm doing something to build muscle back in my leg. I have a very obvious difference in calf size between right and left.

I hope your tests give you a diagnosis and then you can try and control things.

regards Ellen

 

Hi Ellen I have EMG booked for 20th of this month. How does that feel?? I guess it's not nice but just thought I'd ask as you know what it feels like and what happens

Hi Terry

I've had 2 EMG's the first was no problem , fine needles are put into the muscles and then stimulation is put through them and the results recorded ( similar to an ECG heart tracing) Wasn't too painful and over with quite quickly. This didn't show much abnormality. The second was done at Manchester , I was told my previous one hadn't been specific enough with which muscles were stimulated. This one was a little more uncomfortable as the needles seem to go deeper. I laid in different positions on a bed so all leg muscles were reachable e.g. Front , side and back. At times it's a strange feeling almost like having reflexes tested, my leg twitched and jumped involuntarily. The test took 45-60 mins in all, a little uncomfortable at times but nothing too bad.

Hope this helps, I was just glad something was being done and hopefully find some answers.

Ellen

Hi Ellen

Thanks very much for the info my thoughts also I'm pleased that I'm going to be looked at and hope they figure something out

How's you doing now did they figure anything out from 2nd EMG

Regards Terry

Hi Ellen.

A bit of a wierd thing happened to me this week Monday was one of the worst days I've had reference to my muscle spasms and twitching in my leg and buttock. I've been taking b12 supplement tablets as I have a theory about my mylene sheath possibly is weak around my spinal cord. But with taking b12 tablets things did get slightly better but on Tuesday I bought some bandannas therefore I've eaten quite a few of them and the twitches etc have calmed down considerably. Turns out you need folic acid in your system to be able to absorb b12 and there's quite a bite of folic acid in bananas maybe just coincidence but I'm keen to mention this to you especially as you understand how desperate problems like we've got makes you feel. Regards terry

Hi Terry

thanks for the note about bananas, I will certainly try that. 

My second EMG showed quite definite abnormalities. I had some blood taken for testing whilst in Newcastle which can take several months before getting results, I had them taken in July so should hear something soon. I had another MRI a couple of weeks ago on my neck. I have now noticed I have reduced movement in my arms, I struggle to raise my arms out to the side above shoulder level. I have no pain but I can't physically raise them. The Dr thinks I may have something going on in my cervical spine resulting in a trapped nerve. I should hopefully get the result of this next week.

Its so good to be able to speak to someone who is going through something similar. If I mention anything at home all I get is " what's wrong now, your arm, your leg, your back ......." and I do feel as though I'm moaning.

Please let me know how you get on.

Regards Ellen 

I get similar remarks from family members. I even got my wife tonight to place her hands on muscles that are twiching but she didn't really grasp how it feels to us gggrrr.

Yes please try eating bananas and b12 supplement tablets you never know. It's maybe just coincidence with me but a vast reduction in spasms and twitching for me this week. I'm almost scared now invade they increase again Monday this week was my worse day ever. Hope you get results soon. And try what I mention I got the b12 tablets from eBay £6 for 180 tablets 1 a day so 6months supply in 1 bottle. Regards Terry

I used to work with someone years ago called Ellen in Manchester. When I worked for a company called medlock !!!

Hi Ellen xx hope you're improving and sincerely hope you're having a good night tonight. My messages with you whilst I was in hospital helped me know end xx my muscle twitching is coming back in my right leg thigh muscle this time gggrrr xx hope you have a good 2017 sincerely hope so regards from me xx

Hi Terry

I understand how frustrating it is when know one seems to know what's wrong with you !! I'm still awaiting results . I'm glad your home but sad that your symptoms seem to be coming back.

Hopefully we will get some answers in 2017 ,

Best wishes to you and your family xx

Hi ellen. wow long time since we last messaged. how are you now. ? im keen to know..... i still have issues going to meeting with neuro surgeon tomorrow. more waisting especially in bum cheek.

hi terry!!

going thru the same thing u did 5 years ago. just wondering if u had a diagnosis / any improvements?

Hi they're a bit more understanding now. As I was admitted into hospital Friday night now I'm have lumba puncture today and MRI and EMG soon I'm told

I just want to be told WTF is going on and hopefully sort me out

big warm hugs!

sorry you are in hospital but delighted you may have an answer soon.

Please, keep posting