Hi everyone I hope you don’t mind me asking but I am looking for answers to my 7 years of hell whilst waiting for hospital appointments… I put this post elsewhere and a lady with ppms says she experiences this and also another lady with MS but she didn’t say what type… can anyone please tell me if you do or what you think it could be please? Many thanks in advance X Are your relapses like this? I will try and make this short… I’m new to this forum,need advice please?..today I relapsed although undiagnosed with ms, I knew it was coming on as I had loads of energy past few days and LOADS of flashing lights in vision,then today bang, I just couldn’t stay awake, I was out for about an hour, pains and stiffness in my body feeling it whilst seeming to drift in and out of conciousness, when I came round I was still highly fatigues, confused, back killing me, legs tingling,hot as anything, sweating profusely, dizzy and my walking like an old lady, legs going out from under me, legs all over the place… my question is… do you diagnosed m.s sufferers experience anything like this? I also get muscle spasms, poor concentration, poor memory, pains though out my body like proper pins and needles, glass cutting me, hot feelings, cold feelings like water has been split on me, aching joints, aching bones, cheekbone, collor bones, new one is numbness in my throat and lip, I see a white light in my left eye at the bottom move slowly when go I go into he dark and crystals type lights moving at the top of left eye, blue flashes and black spots in my right eye,shaking on my right side,… I’ve been getting all this since 2010 and even when my walking is so bad I’ve had to crawl about on a relapse,the doctor still denies to test me for m.s… thank you for reading this and wonder if anyone can offer any advice or similar experience. Yesterday I start to get muscle spasms in my face and again and then my walking gets even worse. Today this horrible pain in my neck and shoulder which I’ve now had for since the more lights started up xx
Hi,
PPMS means we don’t generally have ‘relapses’, more a slow general progression.
MS is known as a ‘snowflake’ disease in that we all have our very own version of it as lesions can be anywhere on the brain and/or spinal cord - so it’s quite unlikely that any MS patient has more than general similarities.
Sorry I can’t be of more help
Sonia x
Hi Sonia thank you for your reply and the great explanation also x
Hi Janey
Sonia is right with ppms we seem to be a gradual decline with no relapse/remission. I tend to have symptoms daily to varying degrees, but also they can change from morning to afternoon, all very strange. But then ms is an individualistic illness, affecting us all differently with similar symptoms, difficult for anyone to get their head around.
I wish you all the best, and my advice is to take one day at a time, and be kind to yourself.
Pam x
I have PPMS also & every day is a relapse. Depends on the trigger. It’s an overload switch. A sign to calm down, because there is no medication that stops the pains, unless you want to be an addict, to something you will take for the rest of your life. Grin & bare it time. Or do some exercises & improve the quality of your life. The hospital won’t prescribe me meds again & I avoid the GP’s who haven’t got a clue. They sink millions into research & I know what causes it. Boost your immune system with a good diet, steer clear of extremists & idiots. 1+1=2, Apple, Ball, Cat & so on. I’m bored of the Fibonacci bull crap & the black / white doppler games. PPMS is a nightmare for some & a cash cow for others.
Thank you for your reply. I also feel symptoms every single day but some days are better than others as in a bit more energy or a bit less pain but then when this relapse happens is usually after stress, dping too much or a virus. That’s when it all gets so much worse and end up like I explained at the top. Then after that it’s after gradual improvement and then with a cause like I just mentioned bang it’s really bad again. In remission would there be no symptoms whatsoever? Over this 7 years it’s been a gradual thing with different symptoms happening one after the other. Walking got bad 2 years into all and has been up and down since sometimes being abe to do a slight jog about 10 yrds which kills me or so bad I’m falling and crawling x
Hi Puddle, what do to think causes it please? The Dr’s are useless. Over the years I’ve been on all sorts of pain relief ,all except morphine but they didnt want to give me that as I’ve got children to look after, and noneven of it has even touched the pains. Thank you for your advice x
Hello Janey.
I’m sorry to hear of your relapse. I can identify with all those symptoms and even though I have PPMS, my condition deteriorates when I am really exhausted or too hot. Sometimes I have a “guest” symptom which can stay with me for a short time.
I tend to give doctors some very specific questions to try and get some definite answers but the fact is, they are unable to make accurate prognoses because of the nature of the beast. Using both this forum and the MS Society’s site has been a great help in quantifying the consequences of my condition.
Best wishes, Steve
Hi there Janey, I tried killing myself & woke up in stitches, with a crowd of vultures at my bed. If I try again, I will not fail.
On the living side, I currently use CBD oil & take Apple Cider Vinegar + so many vitamins I rattle.
Distraction tends to work. Try to do things you enjoy & ignore the pains.
If the things you like, cause issues with folks with small minds. Blank them & carry on. It’s the only way.
Yes I ignore the pains best I can and get on with it all. I’m sorry to hear you’ve felt so low in the past… I do hope you carry on fighting all the way. Thank you for the tips…I have heard cider vinegar is very good for all sorts of things. Regards Jane
Since your message Steve I’ve had a good think back along this whole process and there has been 1 week in 7 years where I felt no pain at all! But hence to say that didn’t last long but I was shouting it from the roof top “I feel no pain”. Im in and quandary now as to if it’s relapse or deterioration. I was so very ill from the start and getting worse all the time. Then I came out of an abusive relationship and it was like a massive weight had lifted. I still had symptoms but no where near as bad and I felt no longer I needed the stick anymore. Then a few months later at Xmas I had a bad relapse and I’ve not been great since then. Up and down like I’ve mentioned before. Hopefully an eeg can shed some light and I’m going to fight for a spinal mri although they make me feel ill the electromagnetic field pulls on all my muscles!!??
A week on and I’ve improved somewhat but still in so much pain and feel flat in energy but managaging to do all the things I have to do but not without pain of course. There’s light back in my eyes again as when I get so bad my eyes look dead with no light shining, I guess that’s what it does, it seems to suck the soul out of me. I know i still have to be careful with what i do other wise i will go down hill again. Like a loaded gun, ive got to be careful. Do any of you guys feel like this sometimes? Sorry for witering on, and thank you for reading.