Hi guys. I signed up here ages ago and left as I was still without a diagnosis and felt like an imposter until 3 years ago that fateful day come when I was finally diagnosed with RRMS. I guess I just wanted to moan and ask for some advice and just see if anyone else has had these issues Lockdown happened. As an electrician and fire alarm engineer I was classed as a key worked. I followed gov advice but received no letters saying to isolate no help no support it’s never ending. A friend with mild Asma had free deliveries help parcels etc etc and k was left wondering what did I do. Contact the doctors who said to print a form off to hand to my employer Anyway long story short I took 14 weeks off as high risk and have been back to work since they were up several months ago. I hadn’t heard from my specialist in 3 years. I turned up for an appointment they had changed and didn’t tell me as he took time off. Then I didn’t receive any letters So yesterday I took a half day drove 25 miles for my first appointment in 3 years to get a phone call as I arrived with a telephone appointment… Letter clearly states face to face. Just feeling very let down and deflated My pain levels are increasing my symptoms always around at some level, I try to manage with diet exercise and recovering at every opportunity. Sorry for the moan needed to let it out. Also I don’t suppose anyone has been on or is taking Baclofen? Could you tell me if it helps you. I’ve tried everything. From acupuncture to osteopath hot tub which helps only while I’m in it. What else can I do to be noticed as a person with disability I’m 35 and feel like unless I scream and shout to get noticed I am not heard but that’s no who I am. I’m the get on with it and suck it up guy. Thanks for reading
Hi there. Not sure what you`re asking exactly. re getting noticed as a disabled person?
I didnt get my proper diagnosis for 22 years! I saw 16 different neuros in as many years and was finally discharged form local hospital with a big fat? on me bonce!
Then I saw a brill guy at The Walton in Liverpool and hey presto! Spinal PPMS.
Covid has halted a lot of appointments, but then I reckon it has been used conveniently sometimes…to spread us patients out and we got seen less.
Re baclofen…yeh I was on it for a while in my early days, for spasticity and spasms. Like a lot of folk, I was told to find my own dosage to combat symptoms. I did that and ended up with very weak leg muscles and falls daily…which put me in a wheelchair.
So watch the dosage VERY carefully.
So what are your main symptoms you are having trouble controlling.?
Boudsx
Sorry I was having a moan. No I don’t feel not noticed as a disabled person I feel like I’ve been let down by the system but I know so many have and I appreciate you sharing. I struggle with balance, walking. Muscle pain, leg pain numbness blurry vision the list goes on. I do manage quite well I still have to work full time to pay the mortgage and some days is a real struggle. Thank you for the advice, that is what I was consernes about if my legs become weak and I can’t drive or perform I’ll lose my job. I was made redundant then got a new job and have survived 2 since then I think my message was more a moan and to find out about the drugs. I know so many have it worse.
Hi ,
Sorry about your diagnosis, takes a long time to sink in, if ever.
I’m on baclofen and tizanidine also private prescrition of fampyra for muscle stiffness, legs are still like tin man even with the drugs!
Top tip is to keep an MS diary of symptoms, any aids you need, appointments with outcomes etc.etc
Very useful if you have to apply for PIP.
.Take care
Jen
Thanks Jen. Yes I keep a diary, I also track weight steps heart rate and sleep. I did tell the specialist that I have tried acupuncture, osteopath cairopractor hydro therapy, councling, various drugs legal and not so legal. For weed he said if it helps do it but he can’t prescribe. I definitely get the tin Man, sometimes they are so stiff and solid it’s like I’ve done 1000 squats,. We persevere though and keep going.
Hmmm I remember squats, I think I did some in the 1980s !
Hope you find a way to be as comfortable as you can. Enjoy the stuff you can do and don’t get too hung up on stuff you can’t.
All the best
Mick
I know just how you feel.I have had RRMS a long time and i have never had any help with my MS in all this time.I learned early on to just get on with it best way i could.I have never been offered any treatment only steroids which i always refuse as i dont like the side effects and i think they cause too much damage to the body years down the line.I have no faith at all in drs or neuros.I hardly see a neuro these days because i felt as if it was a waste of time going, as i just felt more and more frustrated after each appt.Every time i mentioned a symptom all i got was that’s not really typical of MS.I think there are quite a few of us too just left to get on with it.I had one neuro who retired who i really liked but since he retired i don’t rate the one that replaced him at all.
hi, do you take magnesium? its great for spasms and the magnesium spray is brillant, i take cannabis with a vaporizer at night for pain and to help me sleep, have you tryed cbd oil? its not as good as cannabis but easy to get, hope this helps think nerve pain is the hardest thing to cope with
Hi, nerve pain is the worst, I have this daily, as do most, I use cold pads for mine, as the meds did nothing, I do take Baclofen for spasms though, but keep the dose under control as it causes higher fatigue. Sorry you’re having so many issues, I’m afraid it goes with MS.
Jean x
@Jadee. This is exactly what I was trying to get across. Thank you for putting it clearer. Yes it just feels like even with a diagnosis and the suffering we are in a constant limboland of no support. Probably why I’m back here just to see if I can help others and offer advice in anyway. And to moan. Haha. @simone. I spent over £100 on a bottle of CBD did nothing. I haven’t taken mag although I take lots of multi and coq10 vit d etc. I have enough pot to last a year fortunately but would feel better if my consultant prescribed it instead of saying take it if it helps but I can’t prescribe you as it’s more for people with leg pain… I said I am in constant pain 24/7. Always in pain. I haven’t had a day not in pain he just said ok. Very frustrating. #jean green house. Not tried cold pads. I have tried a tens machine which offers a little something but not enough really. I am conserend about this Baclofen which is why I asked. Thank you for letting me know. And thank you all for your replys
I was diagnosed in 1998 the week before my 50th birthday.
I started taking baclofen because my legs were so stiff. However I was terrified that my legs wouldn’t hold me up and went down the stairs on my bum!
Now in honour of being 62 I’m on the hard stuff, Codeine Phosphate due to a fractured pelvis, and diazepam due to the MS hug.
Yes I know that both of these can be addictive but, like a proper junkie, I will react in the most unpleasant manner if anyone tries to take them from me!
Hope you find pain relief x
I used to be with you in the large group of MSers who are too sick to function at work like normal people, but too well to get much, if anything, by way of help. I’m a bit past that stage now, but I remember it well, and it’s a pisser, isn’t it? I just wish I had more to offer you than sympathy.
Alison
It’s all good Alison. It is what it is. I was just having a down day. Take each day.
Yep. By the way, I like the name you have chosen. It’s a good practical philosophy at work (particularly your line of work!) and in life, isn’t it?
A
x
I use the cool gel pads for my pain too.I find they help with pain more than heat does.Infact heat makes my MS worse.
Thank you. Yes as an electrician it’s my private work business name but also something to live by. Try and stay grounded and don’t lose my head.