Calf muscle and buttock wasting on right side constant muscle twiching

Yes I don't want any surgery. Idea of that scares me. You can get more problems can't you.

That what you start of with

I think my muscles have stopped wasting. In buttock too I hope that is I'm trying to make my calve and buttock tense

Regards Terry

Isometrics !!

What you mean

Hi Terry, I just found your post and everything was familiar, had same symptoms etc. all the tests but I knew I had disc issues from injury and hysterectomy, all nerves connect in the general area and after this surgery I felt the oozing out of disc fluid and that was the beginning of a lengthy and painful journey. Ended up not being able to walk around had bone on bone disc ouch it stops you in your tracks! Fusion surgery L345, recovery and trying to get back to normal. Normal I never found again, nerve damage and nerves did' commumicate well w muscles so plenty of falls, healing etc. Went every route know to pain specialist, shots, physical therapy, nervous nerve stimulator implant and had some relief from that. But, not enough so lived in heavy pain, no activities( just made pain unbearable). So ended up where we were trying so hard not to w serious pain medication my only relief. Felt so quilty taking morphine I fought it until I finally realized it was my new best friend. It allowed me a somewhat normal life. Still struggle, always will, between doing something and paying the price for 2-3days after. Have learned to make choices etc. Now for the part that is really the most hard to deal with. This is an invisible disease, you make look normal but you are not.  Makes people wonder if you are whimping out etc. The need to share this constant struggle is non-ending and frustrating to family members. I found a internet site w various written thoughts, insights from those w this illness called pain. One that helped me went something like this. I Am Not a sissy I AM A WARRIOR, I FIGHT everyday-all day to manage my life! You get the idea Terry. I hope your results will not turn out like mine,however, you may need to be that warrior! I send my best wishes and there is an incoming hug headed your way.??🕊

Hi peony girl

Nice to hear from you and thanks for sharing what your going through . Yes omg nerve damage is blooming scarey isn't it I my family are sick of me going on about it. Turns out I've got 2 X discs degenerating L4/5 and this is causing the S1 nerve to be damaged this is causing muscle spasms and electrical pains down my right leg and deep inside my groan where the nerve is being pinched I think. So I'm on steroids that are designed to promote growth in the spine I am told. Problem is my job as a telecoms engineer normally involved me climbing I've had quite a active career my legs are quite muscly well apart from my right calf muscle as now I've lost the gastrocnemius muscle so my legs are odd and I'm hoping I don't loose more muscle like in the thigh etc which is also twitching ... Hope you carry on improving xx just keep trying and get your nerves talking again I am told nerves do try and take over from other ones so we have to try re train them xxx. Where do you live I'm in Lincolnshire in UK regards Terry

can I ask do you or have you taken anti acid medication for a long time I have a theory about b12 deficiency !!

Hi I have no nickname

Thanks for the advice. Yes my worry is how do you build muscles back without actually putting stress into my spine !! I'm just constantly tensing muscles now trying to do some good

Regards Terry

Hi Terry, my issues are L3,4,5 and S1. Had fusion surgery in 2006, had to could hardly function. Terry, this is a progressive ailment, I am sorry to say I think your profession may influence this situation greatly. 😔 The odd sensations your are experiencing, I had the same except groom area. I was told restless leg syndrome and on and on. It really requires the Drs that work fully w spinal cord issues such as ours. I had to curtail the level of activity I could handle. Above all else you decide your main vocus is no further damage, be aware the more damage the bigger impcact!! I live in the US in Florida. I am lucky that I have access to very talented Drs within a 10 mile radius. I am grateful, I have need of them more often than I would wish!😝Stand up for yourself Terry you have the right to be treated w respect by your family. I imagine they are very terrified to see you vulnerable. I think you are demonstrating great courage and determination to deal w this illness. I send hugs and my empathy. Trust your instincts Terry they are trying to help you! 🍀🕊🌈

Hi peonygirl thanks for you information and encouraging words omg wish I lived in Florida xx. Has the fusion surgery worked and do you think you could have week mylene sheath on your nerves I have a theory about b12 deficiency xx please keep in touch,, heaps of sincere good wishes on route to you now from me xx

Hi Terry, no mine started w injury in high school. Injured my back and disc w sport activity. Could not stand up, was bent over and chropactor ran and jumped on me after he positioned me. No further gym for a full year and that was the beginning of it. As years progressed this injury presented itself, pregnancies aggravated, tore ligaments in left knee, that aggravated it and so on and so on. Until the disc ruptured and that was the event(s) that forced surgery. Many years involved here. You know the rest. Terry, I still mourne the loss of me, I think I always will. This issue is a big game changer and it messes up your head, have to take reality checks, accept it is what it is, the new normal etc. An on-going battle. And my head knows I am so darn fortunate to have the Medicare support, a lovely home, a Husband who is supportive most of the time. He gets discouraged with the level of activity I can do. To be honest depression gets to me too. I hope some of this awareness of my issues will help you Terry. Incoming hugs and sweet dreams.😴🌃🌌💤💤💤

Hi Peonugirl.

hows you i hope your having a good / beeter day.

OMG my issues are doing my head in.  all ive been left with now is tablets to supposed to calm my nerves down im still not doing anything and my cramps and muscle twiching etc is still going on.

ive just bought an inversion table so hoping that a coupl of minute 2 or 3 times a day stretching my back a little may relieve te nerve root.

but omg this is sh*t isnt it.  where do you live again i cant remember.  regards erry..

Hi Terry

so sorry to hear your problems are still on going.

Other than the tablets you mention are dr's not doing any further tests or treatments etc ?

Its so frustrating isn't it when you feel things are getting worse but nothing seems to be progressing as to prognosis.

Regards Ellen

Hi again Ellen nice to hear from you. Yes it's sh*t isn't it and doctor don't want to see me again for 8 weeks. But I'm getting worse so can't see me waiting 8 weeks. How's you did Newcastle sort you out at all. Hope so

Hi Terry, live in Florida, USA! 🐊🦎🌴🎋🦈🐋🐚🌞🌊🌬

Nice one

Florida ehe nice one Wish I lived in Florida and not uk.

Hope you have a good day today.

I've bought an inversion table so I'm hoping that will help. My nuerologist don't want to see me now for 8 weeks But I don't seem to be improving in fact maybe getting worse so let's see if I make it to 8 weeks

?🌴??🏖 Florida nice looking place

Terry I'm still waiting for results ! Neurologist will give me a follow up appointment when results are in.  I'm fed up at minute as I struggle to go up stairs, by bedtime I usually have to go up on my hands and feet. Luckily for me my muscle twitching, spasms etc only hit me at night when I lie down. 

Regards Ellen

Hi Ellen I totally understand what your going through blooming horrible army they. Are you getting the electric pains also. And hope you don't mind me asking have you lost any muscle from anywhere I have but I've not read that other have. !! Hope you sleep ok tonight. Regards Terry

Hi Terry

Every so often I get a sharp pain either in my calf or shoulder and upper arm. They don't last long but it feels like a hot needle is being pushed in. 

I have lost most of my right calf muscle, I just have a dint in my leg where the outer calf used to be. My MRI scan shows I've lost muscle in my left calf and both thighs as well. I walk a bit odd and cannot raise my self up onto my toes due to lack of muscle. I cannot raise my arms up above shoulder height ? Loss of muscle around shoulders. No one has said if this muscle loss is permanent or not so I try and go to the gym or go spinning most days to try and keep what muscle I can.

Once I take the Amytriptyline at night my muscles relax and I can get to sleep but usually wake up really stiff.

what do you take to stop the cramps, twitching etc ?

regards Ellen

I've been given gabapeptin to relax my nerves. But not doing much good.

The muscle twiching etc sucks doesn't it

Hi Ellen. How's you ok I hope

I'm being referred to see a professor in London

Hull general can't figure me out.

Xxx

Hi Terry

Hopefully you will now get some answers.

When I was referred and went to Professor Volker at Newcastle I finally found a group of people who understood how I was feeling and recognised my symptoms. The blood tests they did apparently can take 6-12 months to get results on but at least I will get results !! It's now just over 6 months since they were taken so hopefully should hear soon. I saw a team of people, physio's, dr's and other therapists all were understanding and gave me direct phone numbers that I could use if needed any help or answers.

Thats good news and I hope you get the help you need

Regards Ellen

Just to let you know I'm being referred to professor in London now. Hull can't figure me out x. Hope your ok

Hi Terry!

Just wondering how you are doing as well as others in your discussion.

I'm a year in to constant muscle spasms, charlie horses, twitching. Just noticed in the last month a quarter size dimple in my thigh. Have tried pt & now scheduled for an emg in April. I'm on no prescribed medications as I had a gastric bypass 8 yrs ago.

Niss

Hi

I too have an indentation now on my right calf where muscle used to be !

I have had various tests from EMG 's to multiple MRI scans and muscle biopsy. I am awaiting results from blood tests taken in July last year at Newcastle Genetic Centre. I take amytriptaline for the spasms etc at night. I tried gabapentine for a couple of months (3x a day) but they seem to give me headaches. I'm being tested for stadium ion channelopathy and limb girdle muscular dystrophy

Hi Ellen. Omg I started talking to you when I was first in hospital back in becember. I'm still with no diagnosis I'm to go see neurologist professor in London 20th of next month 5 weeks I'm twitching all over now and cramps and electric pains all over. I believe it's lymmes disease but I'm going to wait see what this prof in London says. I hope your getting sorted but sounds like your still waiting for blood results x omg this being unwell lark sucks doesn't it x hope you have a better day today regards Terry

Hi Terry

The waiting and not knowing what's going on is frustrating isn't it! It was July last year when I had bloods taken by prof in Newcastle and I'm still waiting for results. My spasms etc only seem to affect me when I'm laid down at night but my muscles generally are getting stiffer and weaker. I can't lift my arms above shoulder height and I struggle going upstairs. It's hard to get moving once I've sat still for any length of time , it's as though I seize up!!

I hope you get some answers next month and can get some treatment.

Regards Ellen

They took your blood back in July last year omg and still no results it's an auckward situation isn't it you don't want to p*ss them of but surely they should have results back by now. I would definitely question this 7 months waiting time. I sincerely hope you get some answers soon. Send a letter or e mail they can't deny receiving something like that but conversations get forgotten about I think