Hi, I was diagnosed with MS 20 years ago after numbness, dizziness, relapses and pain. But DMDs have been keeping my relapses at bay in the past few years and I just have to deal with cog fog, dizziness, pain and extreme fatigue.
I still look like I dont have MS in terms of walking, I dont use a stick most of the time. I dont know any one who hasnt declined significantly in 20 years. This doesnt appear to be normal.
I have read about lupus and fibro, and they have similar symptoms and I am wondering if all those years ago I was misdiagnosed. I only get to see my neuro once a year at most, and the MS nurses dont call me back and all calls go to voicemail.
So I was hoping in the first instance to ask for your thoughts about the above please, I have no one else to ask
Many thanks
Hi,looking for advice…i am very sure i have MS but been fobbed off at GPs when i mentioned it …I know i have rights but i am scared to go and ask them again as i am desperate but i havent got the guts…i am pathetic and getting worse…can anyone help …thanks
Hey Prianka
You have accidentally hooked onto a post by anon. I suggest you start a new post or thread for replies to you. I would say to you is there another GP you could see and would taking someone with you help? Perhaps it might help writing all your symptoms down you would like to discuss.
i really hope that you get the help you need.
Min xx
Response to Anonymous first - you have a clear diagnosis of MS from 20 years ago so you must have hit the McDonald Criteria at that time! You must have. So I think we can stop the debate about you not having it. I understand you are thinking you should really be much worse at this stage, I really do but it does not always work that way fortunately! My story is that 20 years ago I was having various symptoms (if you check my profile and posts you will get a flavour of that). I was found to have clinical signs of motor lesions etc and although my history did not particularly suggest MS relapse a Registrar arranged my admission into the Southern General in Glasgow. There I had tests including MRI and lumbar puncture. The MRI found small lesions and I recall one parietal lobe lesion. The lumbar puncture was negative. 18 months later the scan was repeated and the result was just the same. Through the years I continued to experience problems that I felt were perhaps MS related but my GP practice doggedly failed to pick up on the issue and I was perhaps like the second poster, Prianka, in that I found it difficult to come out and verbalise my concerns. In 2003 I was having problems with stiffness in my right leg. Something must have happened in 2008 because I was seen by a Neurologist and a scan was instructed. It was clear. And so my journey went on. I experienced extreme fatigue and in 2005 I saw a rheumatologist and fybromyalgia was mooted. Always the problems physically, the depression and the lack of energy. Not being able to cope with my work. Now in 2019/2020 I am at a stage where I have a problems, slightly, with my balance and my legs are a little weak. My legs from the knees down feel stiff and sore and I have had some falls. I have had a scan and I have lesions on the interface of the Corpus Collosum (traditionally a place which is classic for MS) and another larger lesion. Currently these have been around for 5 months but I still cannot get a diagnosis - oh it could be vascular or functional. The criteria have to be met. I would give anything to be in a clear position to say actually I have MS but instead I have suffered limbo for 20 years Anonymous. I feel for you Prianka. I was around 40 when I was first worrying about it and going through separation and divorce. I was in depression. I actually told my parents I was worrying about it and my mother went with me to ‘confront’ the GP. He did a neurological exam and said everything was fine but in order to reassure me he would refer on. I was duly referred to a Consultant who was not a Neurologist but who said I was showing signs of inflammation in my CNS. Things went on from there although I have to say it is as if my GP practice have been hell bent on proving I do not have MS and I have this week made an informal complaint about one of the Doctors because of her attitude towards me, I am not inclined to this unless I really have to - she was undermining my health. Prianka I would advise you to clarify your concerns in your head and identify somebody to accompany you to the GP you think will be most receptive to listen. good luck.
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Hi anon one of my friends was 80 with RRMS, and her brother had it too. She was still working at 80.
She had RRMS BUT over time had DMD and the last course she was in actually seemed to help her a lot and her main symptoms were fatigue and some nerve pain.
sadly she got bone cancer and passed away. Some people just never loose mobility.
if you had lupus after 20 years believe me you would know my dad had it and its actually a horrible disease.
fibro well you would not have same symptoms its a pain receptor issue.
Just relax and take the diagnoses and keep doing what your doing. Not everyone is destined to have a horrible time, or end up in a wheelchair.
another lady i know still shows her dogs she was diagnosed in the seventies, but not quite so much now.
to ‘anon’ - sounds as if you’re doing o.k. - stop being pre-occupied with querying if you have m.s. or not - get on with things!
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Hi anon, I have MS, SP, but I know a lady in her late 50’s who’s had MS for about 25yrs, she’s still mobile, sufferers with bad fatigue, but nothing much else, however I have sister who is displaying exactly the same symptoms as me and can’t get a diagnoses, just keeps getting fobbed off, which isn’t isn’t fare. So you juts keep doing what you’re doing, you seem to be doing ok, chin up, x x
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Hi all, thanks for all your comments . I want to remain anonymous, but I have a very valid reason that I am questioning it, hence my post. Interesting that others know people also diagnosed 20 plus years ago but still mobile. I cant work due to fatigue and pain, but I question whether my vast amount of prescription drugs I take every day are the actual cause of me feeling like I do. Probably not, but I’m interested to hear your thoughts. Many thanks for taking the time to reply and I hope everyone is staying safe and doing alright in lockdown
Hi, 20 years ago, they didnt have the technology they do today in diagnosing, nor the expertise.
It took me that long, plus a bit to finally get a proper diagnosis this year.
As youll know, everyones MS journey is different to the next person`s.
I reckon your meds have been keeping your progression down.
It`s good news really.
Boudsx
Anon, it took me 40 years to get a diagnosis, and I spent the last 15-20 believing it was MS. My symptoms were consistent from the beginning, and my relapses have occurred like clockwork. Every test they gave me came back negative, including the MRI’s. In the meantime, however, I was able to work and live a fairly normal life; I just did a whole lot of resting in my free time. I had to stop hiking hills and distances while I was still in my teens, but other than that I seemed normal in every way. Even now I can still go short distances without a cane, although I do use a motorized cart when I have to shop.
It’s possible that your MS is just progressing slowly (which is great!), and it’s also possible that they caught it early enough to treat with drugs (which is also really good!). There were a lot of people misdiagnosed in years past, but I wouldn’t question the diagnosis at this point in time. Next time you see your neurologist, discuss your concerns with him, but in the meantime don’t worry about it.
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Hi anon,
So just reading you reply, where you mention about how many drugs you are taking, I too started out on a lot, but have since come off some of them, I now only take Baclofen, I sometimes wonder if certain, neuro, GP’s give these drugs out too easily, I’m lucky my GP agrees with what I’m doing, it was the neuro that got me started and I went a long with it,b ecause I thought they knew best, as I’ve gone on with MS I realise it’s me that knows best, good luck love, x x
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I am 20 years down the MS road as well & still on my feet - leg/back pain/fatigue/depression but still thankful that, if I am saddled with MS - I can still get about & I sometimes think, is it MS but my MRI’s etc say yes & I just get on with it - same as alot of folk above
I have MS SP transportation is wheelchair. Can transfer (just!) Dx’d 2012 . Baclofen is my main med’ 60mg per day.
Consultant just tells me to increase my Amitriptyline med, for my neuropathic heel pain. More chemical cosh!
MS sure sucks!