Ths MS is so cruel. This morning in bed I felt fine, more of less my old self again and I get excited I might be recovered. I get up on my legs and then the facial spasm comes on and the aching legs and aching back. I’ve only been diagnosed for 6 weeks and am getting convinved i’m rapidly declining fast. I’ve only had one massive MS bodywide long attack which completely shattered my body. I was being optomistic and kept saying to myself I need at least 6 months to recover. On one or two days I would say I got to 95% recovered (about three months ago). Now I feel i’m deteriorating and am back at 85%. Its going to be a one year anniversary tomorrow (I became ill on New Years day 2013 with dizziness then double vision) . x
helebon
its a mad roller coaster ride - one i wouldnt pay to go on!
but its early days for you. have you been offered a DMD?
it took me 2 years to get used to my new ms body.
i worked hard at the gym and just when i thought i was getting somewhere???
anyway next week i’ll be going back to the gym.
get back on that horse, carry on and try to be happy.
maybe 2014 will be a better year for you.
carole x
Hi Helebon
Sorry to hear that you are finding things a bit tough at the moment. Unless you have been officially diagnosed with CIS, you will have to learn to live with this s%$@t in your life, I’m afraid. Adapt and modify, adapt and modify! Take control of your situation now. Are you doing everything possible to improve your situation? Is your diet good, can you exercise etc etc?
I can recommend Overcoming Multiple Sclerosis by Professor George Jelinek. This was the first book I bought and this guy also suffers from MS himself.
I’ve had RRMS since 1995 but suffered my first significant relapse in June 2013. It was Hell on Earth- no question! Fast forward and I’ve started my drug treatment and am back into my long distance running/ endurance training. You can get your old life back, pretty much; albeit with a few minor tweaks!
You might have MS, but it doesn’t have to have YOU- very true!!!
Good luck and I hope 2014 shines a lot brighter for you
Tracyann x
I had my first attack in october 2012, with stroke symptoms to my left side. This recovered apart from bad fatigue for months. I then had leg, back pains, limped and couldn’t mobilise because of the pain. Fast forward now and I have found out not only did I have an ms attack but a prolapsed disc impinging on the cord. annular tears and degenerative disk disease probally all coming to ahead as I was lead down alot and had an lp. After seeing a chiropractor and starting gabapentin I am so much better pain wise. Mine wasnt ms nerve pain back problems. Is it worth u looking into seeing someone to pin point whats going on. I thought my life was over, took 1 step forward and 10 back so I know how it feels. For spasms I take magnesium and use magnesium oil from amazon, this stopped it. I also had face spasms but this was definitely worse when stressed. I thought I ws getting worse fast, which made me more stressed and it didnt help my neuro said the pain was all due to anxiety. I started the diet mentioned above but lost so much weight, I was very underweight. So I now eat fresh produce, cut back on gluten and have good fats , hope this helps in some way and u find a way forward, I never would have done if I had listened to my neuro. Xx
Thanks guys for the support. Its really frigtening as it was only through this forum I discovered most of my symptoms were probably part of the long relapse and not steroid side effects. I had many weeks (8) of painful constipation and two days of bladder issues, I read about prednone side effects and put all the symptoms down to that, even my twitching and swollen feet. I’ve lesions in brain, neck and spine. I was thinking I never want to take prednone again if this is what it causes me. I also got a very stiff and painful neck and was putting it down to when i had the double vision for 2.5 months I must have been straining my neck. I need to think a rehabilitation plan of action, try out the magnesium, daily exercise and not just on non-rainly days. I’m seeing a dietitan in 4 weeks time xx
Yes was offered DMT’s last month, have emailed the ms nurse to go to a DMT talk. I cut out gluten and milk but sadly its made me shed a bit of weight so and going to concentrate on weight gain, x
I used complan drink to build my weight up, I saw a natural path and nutrionalist who looked at my fat profile through blood tests and toxic substances in my body. Advised to try and be gluten free as much as possible, eat diary , high protein etc. I have a shake every day with kale, spinach, apple, blueberries and strawberrys and carrots, definetly helps with thw fatigue. I take magnesium, zinc, selenium and gla. Also usw rapeseed oil and have a spoon of hemp oil a day. I took d3 and b12 but levels are very high at mo so have stopped for the time being. Everyone is different but I definetly saw a improvement after starting this and have noticed over christmas as I have had more gluten and treats that its not good r me xxx
Hi I was diagnosed 6 weeks ago and am trying to work out if I am getting better or worse. I’ve only had one massive bodywide relapse. Part of me thinks I feel worse due to being told the diagnosis (so its psychological) rather than physical. Where before I was hanging on the diagnosis of CIS and that it might be a one off thing. My relapse was so bad it was 4.5 months long got my whole body, lesions in brain, neck and spine and I am still recovering. My neuro has an interest in psychiatry so he’s the one to ask, although so far he doesn’t seem to have the best bedside manner and got a bit frustrated with me at my last appt. I have my next follow up in 4 weeks instead of March as I phoned his secretary to say I didn’t get to talk to him about my current symptoms and most of the symptoms of my relapse. The appt was so short and we ran out of time.
I just wondered if any of you have similar feelings when you got your diagnosis?