INTRO

[cynrose]

I had the misfortune of a late diagnosis of cervical stenosis with myelopathy affecting levels C3 thru C7, so by the time I underwent a posterior laminectomy & fusion (with metal rods & screws) in April 2015, it was merely to stop further progression of my condition and not much more.

For me this means I suffer from chronic neck & upper back pain which is constantly in spasm; constant numbness in both arms, hands, all 10 fingers; intense burning pain in both biceps (much worse on the right); moderate left hand clawing; imbalance when walking. I'm unable or have difficulty with getting dressed/undressed (buttons, zippers, tying shoes, bra hooks); washing/combing hair (since my hubby helps me with everything, my hair is in a ponytail or bun every day 😂); cooking or using utensils (hubby has to cut meat for me). I know I'm leaving some things out but you get the gist!

So, that's me!

I look forward to meeting my fellow myelopathy sufferers, sharing experiences, tips & information, gaining & giving support and who knows what else!

[Dodlink Moderator]

That is so tough. Late diagnosis causes so many issues. And the ongoing worry is always how symptoms will progress. Hopefully, clinicians will think about myelopathy far sooner in future.

[Hidden]

Hi Cynrose, well described. I'm having many of the same issues with atrophy, hand clawing loss of the bicep muscle . Strength. Be well .

[Agenesis1]

Hi Cynrose, I am just starting to have the intense burning 40% of a months time, I finally broke down and made 3 appointments with Primary, Sub Primary, and Surgeon in 2 days and thought it was time.... was given a predisone pack that worked for a bit until I could move around and unscramble my muscles, tendons and nerves, before when I had it would be with a episode a few times a year. Do you get a rash from the burning or pain like I do? Thank you for sharing. Stay Strong

[cynrose in reply to Agenesis1]

I'm so very sorry I didn't reply to you sooner. I downloaded this app, I was all happy about it, then it seems I've had brain fog since 🤔. To answer your question, never got a rash (thankfully); it's hard enough dealing with the crazy intense burning pain to where I want to rip my arms off!

I hope your pain & burning are under control 🙏

[SheilaDugan Administrator]

Stay strong I struggle with cutting my meat as well. I also found I lose my penmanship after writing the first few sentences. While all this sucks, I have met some really strong individuals with real big hearts.

[TheHud]

Me too Cynrose.

Just diagnosed, usual disasters as if my life. I got the diagnosis on the weekend the bug hit the NHS systems. 3 month delay while repeated re-sending of info. Anyways whats 3 months to 21 years of problems. In my case many specialists and 3 GPs plus a private consultant missed it. Every bit of me has been scanned apart from my neck which never recovered from a car crash in 1995. I even lost my sight a few times in 2006 and diagnosed myself with optical migain. Went for an eye test and had identical damage to both optic nerves and have since then had to see a specialist every 3-6 months to monitor it and keep my pressure down as low as it will go, laser tubby thing op etc. Had a head scan for MS, saw vascular (vasculitis), hematology ( reactive thrombocytosis), rhumatology (connective tissue disease), orthopeadics (further knee op to cut out lifted cartilage), carpull tunnel tests and x-rays ( 20% nerve damage, exact nerves could not be identified, no obvious oestreoarthritis in hand reumatoid nodules evident) suggest come back in a year to see if the muscles had started to deteriorate as current muscle strength very good lol

So I am now officially disabled, had mild RA to start with and 20% forces disability. Ops on knees, carpul tunnel, various other stuff. My GP decided I must have Fibromyalgia when I privately, dragged a pain specialist to see him to explain the terrible pain, loss of left arm and falling over walking etc so please give her effective pain relief while this is sorted out. So he said it must be Fibro and don't worry dear the neck is just wear and tear. I was 51years old and written off. Things carried on getting worse by Feb this year I had lost all use in both arms, bowel, bladder beggared, so went for a private physio session. She assessed and brought another in, who declared I need to go see my GP and get an MRI asap. Finally got to see new GP locum, he agreed and referred me to neuro surgeon. Got a letter end April and assessment with the new joint musclio/skeletal service 2nd May, it would have been earlier but he had put fibro down on the form and nothing else. MRI 5 days latter, results phoned through on the 8th May, referred next day, lost inthe buggy system.

If I knew how, or who to prosecute for gross stupidity over 21 years I would, or not because I just don't have the energy anymore. Ho Hum said Pooh

Good luck everyone

Yvonne

[doonhamer]

I was diagnosed with MS and 15 years later was correctly diagnosed with cervical myelopathy. I trip a lot, lose balance, fp

[cynrose]

I'm so sorry you had to go through all of that, though sadly I understand. I'm with you on prosecuting