A week ago today I was diagnosed with MS after 6 months of consultations and tests. I kind of expected the out come as I had looked up some of my symtoms so wasn't much as a shock to me, however since having this confirmed I feel I have been experiencing a lot more symptoms like headaches, tiredness and aching. I didn't feel any of these before being diagnosed, I only ever had slight numb tingling
did this happen to anyone else, I think my anxiety is the main cause of this since I have been doing lots of reading on MS
Can anyone give me any advice?
I started having neurological symptoms when I was 18 this is 17 years ago. It started with vertigo, blurred vision and painful tingling in my legs and arms - later face too. I also had numbness in different areas on my left side. Cheek, arm, back, leg. I also have hyperacusis which began back then. It would all flare up for a couple of weeks or so. I'd feel so so tired, and wobbly. Or it would be one thing or another. I had an Mri scan at 18 which was normal. I saw a neurologist back then too who's only comment was that my reflexes were 'brisk'. They didn't find anything to be very concerning and sent me home. I've continued to have these symptoms and flare ups ever since. But they did go away almost completely for the best part of 10 years. They have been an annoyance but otherwise I've been able to ignore them.
Now for the last few months they have returned with an annoying vengeance. There is nothing that awful about them, I can still walk, I slur my words a bit and I forget words a lot. Even names of people I know really well - which is weird. If it's really bad I have to take time of work, but I still function ok, it just is horrible. Anyway,I had a flare up of it all, but this time I had such a strange feeling in my head that I can't even explain it, it was horrendous tingling but also, an intense sort of of pressure and a cold/pricklyness. This has led to me to the docs as I couldn't sleep.
I've since seen an ENT specialist, because the ear and vestibular symptoms point to Ménière's disease. However, I've got no permanent hearing loss. And the other body symptoms are still not explained.
A had a recent MRI to check for acoustic neuroma, and I asked for a copy of the report. No acoustic neuroma, and nothing noted to account for my symptoms. But it says 'prominent perivascular spaces noted in basal ganglia and white matter' I've done some research on this and I'm hoping some of you might hence know why I am concerned about this. ...The ENT specialist thinks I probably have a 'Ménière's type of thing', but he would have expected hearing loss by now, so agrees with me that MS could be a concern. He thought that my mri scan doesn't completely rule out MS but neither does it confirm anything.
I've had this for so long now, that surely the mri would have shown a lesion if it was MS? But I'm also unconvinced that it is menieres. And, after googling about what my Mri report said - feeling all the more bewildered and In the dark. None of my symptoms are disabling, but they certainly aren't pleasant, and they scare me to death. I don't want to waste NHS resources, but I think I would like to see a neurologist again.
Do you think I should raise my concerns about MS with the doctor and get a referral ?
Two weeks ago the diagnosis came through. After months of tests and being told different diagnosis (including that it could be in my head) part of me was, dare I say it, relieved.
Now though, reality has set in and I am trying to face it, but I'm really struggling. Every time I sit down to research it, I last around five minutes before shutting down the computer and crying.
Aside from that, my biggest decision is revolving around what DMD to go on. I have talked with my neurologist and she is talking about putting meon Rebif. Although she is a great support, I have been given so many leaflets and so much information that its just a complete overload! But she really is pushing rebif, and to be honest I do like the sound of the rebismart machine, if I have to use a needle everyday, I really don't want to have to see it.
If anyone could provide me with any advice or help I would really appreciate it. Is anyone on rebif? Or used to be ?
I`m a complete novice so please bear with me...
I woke up one day 13 years ago with the right side of my face, forehead, mouth and tongue pins/needles/numb and had it for approx 6 months, I first panicked thinking I had had a stroke - and it took months to see a neurologist and get an MRI scan - which was pretty inconclusive - neurologist mentioned possible MS but was uncertain so that was that.
Then 5 months ago, ( 13 years since first episode ) I woke up with exactly the same feelings in the right side of my face, almost like a local anesthetic at the dentist - I managed to get an MRI scan done within a few months, and had a follow up appointment with my neurologist last week, totally expecting him to say MRI was clear and I was fine, I was a bit gobsmacked to be shown the MRI images and informed that various white splodges on the scans were indicative of MS - (there were loads) and that while he needed to cross the T`s and dot the I`s - it was looking rather much like an MS diagnosis - although he said he was going to officially confirm anything until he had done ALL other tests first.
So I have now been booked in for a Lumber Puncture ( eeeek very scared..) and had loads of blood tests taken, and need another MRI with contrast before an official diagnosis.
He did suggest the good news was the 13 year gap between episodes ( well...major episodes )
My main symptoms are
FATIGUE - terrible, can only work part time and have to manage my time and have regular rest and naps , if I get too tired or stressed I start to feel really ill, shaky, and lose ability to concentrate and get things mixed up, feel like I really dont know what I`m doing or saying and need rest asap, and my memory is totally useless and i can`t recall total episodes of my life, not to mention the short term memory problems also.
PINS AND NEEDLES in hands and fingers and sometimes in legs - and still just the mild tingling in my face that worsens when I`m stressed or tired.
So awaiting on the LP and final diagnosis and then we`ll see what options there is, but I`m keeping optimistic and positive about this and hoping i can somehow learn to deal with the symptoms - after all If I do get a positive diagnosis then its nothing really new, as I`ve most likely been suffering it for years without actually knowing.
signing off for now :-)
Hi all !
Hope you can share your thoughts on this
I apologise for the length of this post in advance
Right to start off.
5-6 years ago one day my upper eyelid on my left started twitching which at first I thought I was tired stressed ect. So I tried to get more sleep , less stress. After three months of constant twitching I started to grow concerned it was driving me nuts!
So I started taking magnesium pills ect and stopped any caffeine. Then one day it stopped! Great!
The next morning when I woke up the lower eyelid on my right began twitching I thought then this isn't right.
And then shortly after everywhere was twitching on and off calves , thighs , shoulders , abs you get the picture. And is wasn't just a twitch sometimes it felt like what I can only describe as a rumble in my muscles like a spasm but not painfull and also sometime my muscle would "pull up for a second or two and drop back" (sorry im trying to explain the best I can)
I though I have either MS or ALS. From the literature I had read this was ALS.
I went to my GP and told him of my concerns. He said " the chances of someone of 26 having ALS is 1 in a million. He said it was as likely as me walking down the road and finding a bar of gold. It could happen but very unlikely ".
I went away with that in mind but the twitching ect continued so I returned and said I would like to pay to see a neurologist.
2 weeks later i saw a neurologist by that time twitching had subsided somewhat but not gone.
The neuro was very thorough and test my reflexes , strength , balance ect , and said " you dont have ALS or MS , I would have found something clinically but you are totally normal. Its benign you are fine"
I took this a gospel and just went on with my life.
The twitching subsided further but never went every now and then I would get a twitch here rumble there.
Fast forward 5-6 to now .
Driving home from work beginning of april suddenly my right hand which I was driving with suddenly was complete pins and needles . It lasted 30 secs or so. I immediately thought thats MS.
By the time I got home my finger tips on my right hand felt strange all I can say is the felt bruised not painful but as though there were injured within the hour my other hand fingertips were the same. I thought MS didn't present symmetrically so thought it cant be that must have injured them at work.
5 weeks later the sensation had remitted somewhat but was still there. Then I started noticing when I bent my neck forward I had a rumbling in my back and tingling in my feet (lhermittes)!
Went to the GP four times they said "trapped nerve , disc problem but not ms balance ect fine " He sent me for a cervical MRI.
Before the cervical MRI systems mildly developed when I walked my dog and got a bit hot I would have little areas of tingling in my thighs and abdomen that would get worse when bending my neck forward.
So before the results of the cervical came back.
I again had to pay to see a neuro and again clinical was fine but he said " it sounds like Lhermittes ill send you for an MRI of your brain and cervical but I cant find nothing wrong with you " same as the previous neuro.
When the results of the cervical came back it was inconclusive and said " there are two areas in c-spine that seem to be in keeping with demylenation but could be artifact "
When I went for the brain and cervical a month later the radiographer done my brain and cervical and then brought me out of the machine he said "when was your last MRI and on what ? I told him on my cervical and he then told me that while I was there he was going to do my whole spine before I could ask anything I was back in the machine . They did the whole spine then brought me out gave me an injection and then did the whole thing brain ect again. I new then that this was trouble because they were doing this off there own back and not from request of my neuro. I was in the MRI machine for 2 hours!
When the results came back they were bleak. They read " Several ovoid t2 hyperintence/ t1 low signal lesions in the corpus collasum , basal ganglia , left external capsule and sub-cortical white matter"
I don't really have a clue what this means and neither does my GP except its MS.
Now I think that the MS was starting all them years ago with the muscle twitching 5-6 years ago. Surely all those lesions would not have appeared from as recent as April this year.
And I wouldn't have even thought MS if I hadn't have these sensory symptoms the old muscle twitch / spasm I would think its still benign and could well be I really don't know.
Tell me what you guys think of this epic post (sorry to anyone who took time to read it)
Do you think I had it all them years ago ?
Also as a bonus the NHS haven't got an appointment with a neuro for me until the middle of December
So looks like I will be paying to see one again -£250 !
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