How do I get about getting a diagnosis when since the 80's and several house moves I have been unable to have any referral for further tests.
Back in the mid 80's my GP told me he suspected I had MS only the Neurologist I was referred to just duplicated the basic tests that the GP had already done.
When I asked for a referral for further investigations he told me that all my symptoms were due to anxiety.
30 years down the line I am no nearer to finding out what is wrong with me despite my midwife during one labour in 1983 said that MS had been put on my notes to inform staff on other shifts that they needed to be aware of my Multiple Sclerosis as it was already causing difficulties.
I asked about this when seeing GPs further down the line and they said they knew nothing about this.
My P.I.P. application was turned down due to lack of evidence so how do I get this?
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 :-)
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.