With hindsight I've had symptoms for years!

New diagnosis and before diagnosis
1

Hi all, just a chat with the ether if nothing else! I’m not sure even if this is in the right place.

With hindsight I’ve had the symptoms for about 15 years, I’m 40 something now(I stopped counting). It started with problems with me back, walking difficulties, dietary difficulties, toilet problems, dizziness and confusion. The NHS never diagnosed me with anything concrete and you learn to deal with it ‘try these twice a day with meals’.

In March last year i thought i injured my hands from over work and they have been numb and tingly ever since. In May I lost feeling in both legs and was forced by family to go to doctors(don’t do doctors) and found out they took me off for not going for a number of years! I was finally advised to go to a and e at local hospital, 6 hours later and a few tests I was sent on me way again with some pain killers and told to take it easy (I didn’t have no pain just numbness). A couple of months and I could feel them again. After a very stressful year with me kids and what life throws at you I started getting very dizzy and trouble focussing on stuff, also realy wobbly and me ears felt blocked all the time, this was in November. I saw my new doctor and refered to hospital for blood tests, chest xrays. In January I was given all clear by hospital. My doctor prescribed some betehisine and decongestion pills ( these did help with me ears but not with me walking and focus). Went on for a couple of months with same symptoms. Pestered the doctor again and he referd me to an e n t specialist at hospital in May.

At this point I all apologise for being long winded and droning on blokes are not brilliant with sharing!.

Against my wish’s the family clubbed together to pay for some tests to be done privately( march time). Firstly I saw an e n t specialist who refers me straight away to a neurologist, the neurologist booked me in for brain scan, MRI spine and neck. Within a week the results pointed towards ms. He pescribed steroids in high dose (1000 mg a day for 3 days) which no pharmacy would give me!. Back to the NHS and have just finished a 5 day course of 500 mg a day ( back to me raving days staying awake all night!) That was a long week!. Am waiting to see an NHS neurologist in June. Im slowly coming to terms and find the more people you tell makes it a bit easier! Current symptoms include I need crutches to walk, still dizzy and un focussed and my ears feel like there going to explode!

Thanks for letting me share.

PS. My first name was Nick Sunshine being positive and all that, but that’s way more happy than I feel!..x

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Hi Nick,

Really sorry to read your post. It looks like you’ve been through the mill with a load of symptoms and, naturally, you’re worried.

On the plus side you haven’t been diagnosed with MS. On the other you haven’t been diagnosed with anything. This is called “in Limbo” and is depressingly common.

The trouble with the nervous system is that when things go wrong it’s because of loads of reasons. And because diagnosis is complicated doctors are wary of jumping to conclusions. The upshot is that diagnosis can take time.

And that’s not pleasant. It’s human nature to fill blanks by imagining what it could be that’s missing, but you shouldn’t try to diagnose yourself just because your symptoms are similar to something you read.

I’m not saying this is the wrong place. It’s quite a good place and you welcome to come online and have a chat whenever you want. Whatever you are going through it’s likely that there will be someone here who’s felt the same and they talk sense.

So, stick around kid (I’m 63 so I can get away with that). You’re right, the more often you talk about it the easier it gets.

Regards,

John

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hi nick

you’ll probably feel relief whn you get your diagnosis.

my lovely neuro was ever so sad to tell me that i have rrms.

i was beaming because i thought i was going bonkers fast.

ms is life changing but not life ending.

i’m 59 and was diagnosed the week before my 50th.

at the moment i’m hobbling because i stumbled on the stairs on saturday because i was giddy cos going to pub.

i missed a step and think i’ve damaged a hamstring.

people ask me if i went to a & e but if i had gone i would have missed a good night at the pub.

you’ll be alright honest.

i look forward to seeing you revert to your old name.

carole x