Hi hun, not long ago well beyond 20 years anyway one of the ways they diagnosed MS was to get people to sit in a bath of hot water like they would at home. Thats true you can google it.
I never have a bath now, we took it out now i have a walk in shower, even then i have to have it tepid. I used to feel areas of numbness when the water hit me, even the shower would wipe me out still does. I take a shower then i have to rest.
Yes its been hard, but my first main symptom was in 2000 which was ignored totally by my GP at the time. I had awful pain in my eye and was told it was dry eyes lolā¦later in 2008 i had a VEP test which proved i had optical neuritis even 8 years on. When i saw DLA doctor i wasnt diagnosed and she said without doubt i had MS way back then, and she could see a pale optic disc in my left eye the one i was having issues with, and pushed me to keep seeking answers.
Funny enough i was her last patient to be assessed through DLA, as she had enough of the beaurocracy of it, as people she put forward for it didnt get it, and vice versa. Whatever she said to DWP though i got it, indefinite, without a diagnosis of MS, because my doctor supported me, and so did my neurologist.
I have no complaints whatsoever with the NHS and they people who have cared for me, non as they have done what they could to make me comfortable through this journey, i had faith in them, and i finally rewarded. Weirdly enough nothing much will change, i just see a pain clinic, and hopefully start some drug from London which has shown promise on people like me, but i am not sure what the neuro said or meant as by then i was in the clouds lol.
Hi I have been dx SPMS 7 years but I went to the dr about 25 years ago with some numbness and was told it was a trapped nerve. Over the years Iāve had various patches of numbness and a few other symptoms. My family thought I was a hypochondriac so after a while I just kept things to myself until my left leg started dragging after being on a walk. My husband thought I should go to gp but was convinced it wasnāt anything to worry about until it started happening more often. Then after that dx came relatively quickly.
Thinking about it I am glad I wasnāt dx back then as Iām sure I would have had a very different outlook on life and Iāve been able to bring up my family in total ignorance and no health worries.
One things for sure if you have ms itās not going to go anywhere and it will certainly reveal its ugly head eventually.
Is that what you were expecting. Even if it was i guess its a strange feeling when you read it in black and white,it must make it real now evn though your symptoms were real all along.
During the tens years of trying to get a diagnosis did you have symptoms constantly or did they wax and wane. Also how have your symptoms progressed?
Im very interested in your journey as im probably still at the touch line but determined to find a cause of my symptoms. At first ms was not something i considered and now i believe its a strong possibility.
Hi christine, when i go back on it, the first symptoms blindness was totally ignored. That was 16 years ago. Then nothing until 2004, when i collapsed with UTI, and now looking back on it, a typtical MS relapse. Then i recovered but had residual stuff to contend with was told it was overwork, then 2006 another collapse, which left me unable to get out of bed, and then slowly deteriorating symptoms, but some resolved and some got worse.
Over the time 2007 until now, my symptoms have stayed the same always left side. Slowly very slowly chip by chip i have lost ability to do things. Some times maybe six months i stay on a plateau and it just evens out, then i will wake up to it shifting slightly like the ground from under me, is moving. So yes slowly my mobility has gotten worse. BUT its always the same side the same originally symptoms but worsened. For example the left foot and toes, i used to get tingling and numbness and ice cold etc, now in the last year slowly my toe next to big toe is lift up and now it goes into a huge spasm and hurts like you cant imagine as it sticks upwards and sidewise in a cramp and spasmā¦and under my foot, my ankle and calf cramp and my thighs awful spasms.
Now my right is pretty ok, but i get all the burning and tingling, and buzzing, and fizzing, and prickling down both legs its relentless, but sometimes its ok to cope with when i have overdone it well it goes mad.
So yes overtime i am slowly becoming more and more disabled.
I believe not sure that is how PPMS works. I find it astonishing i have gone from not MS to PPMS lolā¦x
Yes what a leap from not ms to ppms. Still confuses me how they reach what type people have, do they ignore your first symptoms as not ms related or is the time gap too big.
My brain scan has showed some spots of lesions which radiologist said could be due to some kind of demylination but first neuro ignored this. New neuro said even if lesions dont show on brain or cord it does not mean i dont have any. Again this confuses me, how on earth do you get a diagnosis without evidence, Some of my spots are in non typical ms areas and some are.
When you had your brain scan you say they put it down to age, at this point did they scan your spine?
Im putting alot of trust in this new neuro who seemed confident in his findings with me and told me he was sure he would get to the bottom of the cause of my symptomsā¦iv never had that before which was refreshing but part of me is till anxious that it will all come to nothing.
About the age thing. When I first saw a neurologist in 2009, he told me it couldnāt be MS because I was the āwrong ageā. I was 59.
After a LP in 2010 he had to diagnose me with PPMS.
He didnāt like that one little bit. After giving me the news he couldnāt wait to leave fast enough. In fact we saw him get to the car park before we did.
What i dont understand is why is age a factor if you have the symptoms and evidence. Is it because ppms is rare and neuros dont consider it?
Before your LP had your scans and tests been inconclusive, im asking all these questions because im still trying to work through all this and also because im 57.
I have no idea Christine, how their mind works. I think the trouble is there is an area of MS which affects older people more like PPMS. It can skip and just go straight into it. All I know is that head MRI i paid for, it wasnt clear you could see all the bright spots and the radiologist said it could have been demylinating but put it down to my age. I think like any disease when its been around for so long like MS has, I am convinced it morphs and changes too. I think its a learning curb for the neurologists too.
When i had my brain MRI, i never had a spinal one, until later, that did show lesions but i didnt know about it until i bought my notes. I know for a fact now just through some letters they found THREE lesions over a space of a few years all in different parts of my spine.
1 vep positive
3 lesions
1 vep positive, this leads to a diagnosis.
The trouble is a lot of lesions never show up doesnt mean they are not there, and some heal themselves too.
He said my oligoclonal bands dont quite show the classical pattern for MS lol, but it doesnt explain why i had them in the first place, he said to me there were quite a few presentā¦what does classical mean? If I was healthy they shouldnt be there thats the point too surely.
I understand what your nuero means, you have symptoms but nothing to support why, but it doesnt mean you dont have the lesions there, it just means the machines are not picking them up.
Keep going be positive, if it is MS it will show itself eventually. xxx
Didnt you just feel so vindicated lolā¦ I feel like writing to my 2 second opinions and telling them i want my money back lolā¦one said it was CFS, and the other functional disorderā¦IDIOTS.
Neither one of them had my notes to hand.
I was told if you get MS later in life its usually PPMS. xxx
Your story sounds just like mine. Only mine took seven years of testing to be told no it wasnāt ms, no help or support, to eventually in February of this year to be told I have secondary progressive ms and most likely had it for over 28 years going on my medical history.
I still keep thinking itās not real lol. I canāt believe that someone actually believes me. I thought it would be a huge relief but like you said Iām no different, only now I can move on, deal with my ms and live my life. X