Hi Everyone
I first asked a GP about my symptoms back in the late 80s and he told me he suspected a central nervous system disorder after doing the usual neurological tests GPs can do. He referred me to a neurologist.
The neurology appointment and consultation arrived early 1991 and he repeated the same tests the GP had done then said he was all for sending me for further investigations. He then asked me to wait in his side room while he took a look at my medical notes in case he missed something.
After 10 minutes or so he told me that after reading my notes he had decided that since all my symptoms were most likely due to mental health issues (anxiety because I was mum to 2 children with special needs),he felt further investigations weren't needed. I would no doubt get the same response now as I am currently caring for my husband who is terminally ill.
In the 30+years since, all of those symptoms have got a lot more noticeable and others have been added.My current GP knows about the new symptoms but I'm still know nearer getting a diagnosis than I was 30 years ago.
I have had friends accuse me of malingering as I have no diagnosis (dumped friends now) and when I was in a coma following a cardiac arrest four years ago, hospital staff told my husband and my son on different occasions that they thought I was a hypochondriac. I can only assume that this is on my medical records as I hadn't talked to any staff at that point.
I am currently working from home as a writer and also run a bunch of on-line stores so it's not like I am just a lazy so and so.
I'm really posting to say that acceptance without fighting for a diagnosis has simplified my life so much and I am a much calmer and happier person for doing this.
Hello out there. I’m not sure of forum etiquette so forgive me if I’m doing stuff wrong & please do correct me!
so, I was diagnosed with PPMS in August last year after approx 15 months of investigations, scans & odd symptoms that had me feeling like a complete hypochondriac.
The general neuro consultant who gave me the diagnosis discussed a raft of referrals he was making & off I went to wait for appointment letters. And I waited & waited & waited - but received nothing - not even the usual copy of the repost sent routinely to GP. Chased it with the dept admin & was told to “be patient”
Turned out some admin error led to no action or referrals being done for months & I just got fobbed off over & over. Only got sorted when I reluctantly complained to the trusts PALS service.
So - I now have a first appointment with the MS team on 24/2/20. I’m hoping it will result in some treatment and advice, and an intro to the MS nurses team as ppl say they are the best ppl to talk to about your ongoing symptoms/issues.
I’m waffling - but basically am wondering if anyone has any advice or suggestions of things to ask the consultant and/or team during a 1st appointment that would be useful to know - having waited so long to see the MS specialists I want to make the most of it.
Thank you! 😊
Hi everyone
Very new to all of this but thought I'd reach out. I've just been diagnosed with RRMS a few weeks ago, and given the Covid situation everything (apart from MRIs!) has been over the phone. So it's all been a bit surreal..
I've had unexplained spells of dizziness and fatigue over the years, but the incident that has led to diagnosis was (I'm told) a pretty severe relapse which Drs initially thought was a stroke. I had awful dizziness and fatigue, and then lost strength, balance and coordination on my left side. Thankfully I'm feeling much better now but the last couple of months have been terrifying. I guess I just want to say hi and speak to others with similar experience- my husband has been very supportive but with the lockdown I'm feeling quite anxious about everything.
Hi everyone. I had a confirmed diagnosis of rrmson 16/12/19 i am 35 years old and i had my first relapse at 16/17 years old. February 2019 i suffered from optic neuritis which lead to mri and my diagnosis. I know we are all different but can any of u tell me your story of relapses after diagnosis and how often etc. Thank you x
Hi
Thought I'd come here for a bit of advice
I am 49 female and for the last few days have been experiencing numbness in my face - like when a dentist does a filling. My tongue and gums are also numb
I have had numbness in the hands for years, possibly due to a compressed nerve in my neck (diagnosed as tennis elbow, then spondylosis via mri, my feet also tingle with strange feelings in my knees
I don't have any pain anywhere apart from occasional lower lumber and mid back pain.
I don't have any double vision, slurred speech.
I walk a lot and keep relatively fit
I've done some research hence being here. I know that it generally affects younger people, but can arise in my age group.
I've read that if the problem is MS that it could take months/ years to get a proper diagnosis and that there isn't much treatment available.
Early next year I will be 50 and I am planning a massive long-awaited holiday to America and Canada, however, I am fully aware that if I go to the Drs and they refer me to a neurologist I then can't get travel insurance due to having an 'undiagnosed condition'
I've looked at the medicines available and they seem to prevent flare-ups by 30-50% but most of the treatment is physio, exercise, cognitive therapy etc (self managed)
I don't know if I have MS, but if I go to the DRs and get a referral - then my 50th birthday gift won't happen
Any advice - have I read the treatments wrong - is there a point going to the Drs at this point - how long do referrals take
Thanks for your help
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.
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