I have something going on so just wondering if anyone has the same symptoms and found out what's wrong or a cure I can't lift myself up onto my toes on Right side and calf muscle and buttock is waisting and constant twitching in buttock feels like something moving inside thigh and buttock muscle I'm waiting for blood tests and I have EMG booked for 20th December But omg it feels like something is inside my muscle eating it away Any one else had similar symptoms if there is I understand what you going through my wife is just getting more and more annoyed with me the Internet is scarey but omg all you can do is gain knowledge etc from Internet at the moment I only have issues with my leg and numb cheek on the one side my RH Side
Sounds very similar to my problem. I first noted wasting if my right calf and lack of strength in that leg. I began walking with a sort of limp. This was approx 2 and a half years ago. I have seen 2 neurologists a neurosurgeon and in July I was referred to a professor at Newcastle. I've had several MRI scans, blood tests and a muscle biopsy. At first it was thought I had limb girdle muscular dystrophy. Now the professor is looking into rare genetic disorders, mainly ion channel myopathies. My right arm has recently lost movement, in that I don't seem to be able to raise it above shoulder height. I also suffer with stiffness in my muscles which is improved with exercise or warmth i.e. Hot bath. I am awaiting results from Newcastle at present, I will let you know if I get a diagnosis
Regards Carole
.
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 engineer I 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
I am sorry for what ever is going on.
But I am even sadder to learn that your family is unempathetic. hugs
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 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
Hi Terry
sorry to here your in hospital. What was it that took you in, ? The spasm's.
Please let me know how you get on.
Hopefully you will get some answers.
regards Ellen
big warm hugs!
sorry you are in hospital but delighted you may have an answer soon.
Please, keep posting
Yes the spasms and electrical shock. They had speed into my bum cheek and on Friday the electrical shocks ended up deep inside my groin area I couldn't cope any more so went to A&E and thank god they admitted me I've had MRI and more blood tests.
Spoke to my uncle yesterday who told there's history in the famil of bad blood flow in legs his grandad lost both his legs and my uncles had a tube put down his right leg also. This maybe why I've got the calf muscle wastage in my right leg and bum cheek. The electric shocks and muscle spasms I now think could be due to being bitten by a tick on my right ankle you can still see the red mark and I can remember pulling / scratching a kind of tiny needle out. About 7 weeks ago. Therefore the muscle twiching and nerve damage could be from Lymmes des ease which you can get from tick bites so I'm keen to speak to doctors now ASAP. Bet you think I'm a right One
But honestly I never ever go to doctors my local go at one time archived my notes because they thought I'd moved out the area.
How's you ?? X
thinking of you...
Hi Terry
how are you doing ?
im still awaiting blood results from Newcastle, should be soon now as its approaching 6 months since I was there.
hope you've got some answers
Ellen
Hi Ellen omg I'm sick of being in hospital basically tomorrow I will have been in here 1 week I've had MRI. Lumba puncture and EMG tests. They've kind of Said they've ruled out most of the nasty posibilities and said they thinks it's a mechanical problem I'd a trapped nerve or swelling trapping a nerve. But then yesterday they said they're still looking into every option as they're still waiting for blood results. I believe I've ALS been bitten by a tick and been infected with lymmes desease which also gets into you nervous system and played havoc So I will keep you posted on what my final diagnosis is xx. Ps hope your ok and hope your managing ok xx
And hope you've got your blood results back. Please let me know ASAP X