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Do I have MS?

I am a bit of a worrier, I know, and have a history of jumping on a perceived body change and taking it to the doctors, including Dr Google. 

Particularly now I'm 52 and many things don't work as well as they used to - how do you know what's just "grey hairs" and what's not.

But I've had some symptoms for 4 years now that have a consistent pattern and have recently got worse.

I have pretty much convinced myself I have MS in hearing other peoples stories of first symptoms but I would of course love to be told otherwise.

I've just bounced back off a GP visit with no progress in diagnosis or managing symptoms and I'm left feeling that I'm just another cyberchondriac

I feel I cannot sit in limbo doing nothing.

I have always felt that if something is making you unhappy you need to take control and do something.

So I'm here.

My story below.

Many thanks to anyone who can take the time to read it and can offer advice.

Regards,

Banana65

====================================================

2014 April: 

Noticed a lot of eye floaters and in particular a dot in my right eye that seemed more fixed. 
Was getting a consistent dull headache front/right.

Saw an Ophthalmologist - who reckoned it was just a floater.

I decided my headaches could be due to a wisdom tooth I had or needing a change in glasses prescription. 

Or possibly I had sustained some injury during one of my many falls on an earlier snowboarding holiday in February.

Possibly stress related - My wife had had cancer since 2012 and during this time I had a lot of teenager troubles with my son. Trips to the school and worries about exam performance etc. Dropping out and repeating a whole year of school etc 

2014 August

Still had the headache front right, and also now very slight feeling of tiredness in my left arm and a numb/tingling feeling in the smaller toes on my left foot.

Very "uncomfortable feeling neck" - like I need oiling. Lots of crunching sounds when I move my neck.

Some weird shooting pains on one side of gums. Dentist could not explain this one. 

Problems consuming information at work - felt very easily overwhelmed. 

A feeling like pressure on my windpipe like someone is pushing on it.

I decided to ramp investigations up.

2014 November

Saw a neurologist at the Hospital.

He basically said my headache was difficult to quantify - sounded muscular but one sided location and floaters suggest migrainous.

He suggested various things to try: 

ENT check - nothing found
CT, MRI, - nothing found
Naproxen then amitriptyline - took them for a bit didn't seem to make a difference.
Physiotherapy - spent some time here doing neck excercises I did not feel they helped. 

I did feel when he applied some pressure on C2 that my headache got better.

He referred me to a neck specialist who said "my presentation" of right sided headache and left-sided aches and tingling was unusual.

He organised a CT scan of neck and on the results said there was nothing unusual - some age related deterioration. 

He dismissed me and suggested I might like to go back to neurology.

2015-2017

I gave up. My wife had ovarian cancer. I threw everything into her situation and ignored my symptoms which persisted but did not get worse.

In November 2017 I lived with my daughter in the hospice while my wife got worse and eventually died. During this time I start to get dizzy spells.

The dizzy spells persisted afterwards.

2018

I saw a GP in January about the dizzy spells. He said it was probably just a virus - come back in 6 weeks.

I left it until May. By this time I had noticed that the dizziness had a pattern - when I roll over to the right in bed or when I look up and slightly to the left.

But what really made me go to the GP was that in the last month I was much more aware of my headache and my left-sided symptoms had got worse.

The tingling feelings encompass my lower leg and foot.

My left arm feels tired and my left shoulder and neck aches with a tingling in my left small finger.

Furthermore I now have a tingling in my right small toe and finger.

I used to be mostly bothered about these symptoms at night. But now I'm very aware all during the day.

I do notice that these symptoms get a worse if I'm stressed.

And I am stressed I know it. I've been bringing up my 11 year old daughter alone since my wife died. Just getting everything done including a full days works is hard work.

I've had to work from home and my BT broadband has been failing constantly and they can't fix it after 4 engineer visits. 

I took a new car for a demo drive and someone drove into the back of me - I was stressed for days and my right-sided headache was bad for days.

We were burgled and had bikes stolen.

There are sudden flashes of loss of concentration when I'm stressed.

I took all this to the GP a few weeks ago.

He said I probably did not have MS because such things normally start earlier in life and that he would expect the symptoms to be more serious like not being able to move my arm in certain ways.

He said he was not dismissing my symptoms but that there probably was not much to be gained from being referred to neurology at this point but that I should come back if things get worse.

I think he pretty much convinced me, with great help from myself, that everything I experience is probably stress related.

The "nothing to sinister worry about" feeling you leave the GP with does not persist for long

 

 

 

 

 

 

I have MS

Hello Banana

Generally, GPs don’t either diagnose nor rule out MS. And your GP is wrong in saying that it can’t be MS because you’re too old (see the thread just below yours to start with - lots of people are diagnosed with MS in their 50s and 60s.)

So, if you have clear neurological symptoms, the expectation would be that your GP would refer you to a neurologist. S/he could then do a full neurological examination and decide whether your symptoms warrant further tests. 

Headaches, vertigo, numbness, tingling, pins ‘n needles etc are all neurological sounding to me. But your GP needs to believe that for you to be referred to a neurologist. I would suggest that if your symptoms persist, never mind getting worse, just if they don’t spontaneously remit on their own, go back to the GP and directly request a referral to a neurologist.

You could have a look at this (admittedly old) report from the MS Trust: https://www.mstrust.org.uk/research/research-updates/update131014-can-ms...

​Best of luck. 

Sue

Hiya,

 

How about having tests for ApS, http://aps-support.org.uk/

 

That's the problem there are a lot of things with similar symptoms.

(I forgot to mention the memory problems and the tinnitus I have).

Thanks for taking the time to reply

Banana65, I just wanted to say hi really.  To post on this forum suggests to me that you really think your symptoms are ms.  

i had a different journey than most who post; I had a rapid progression of symptoms (very scary at the time) and displayed all 

the classic (medical evidence) lesions on my Mri, (in the right! Places) bands in my lumber punter but not in blood, backed up 

by results of evoked potintals.  

 

Having been reading posts for nearly a year now, sometimes I read and think yes that's ms, and then keep reading and find its 

proved not to be.  Other times I read and think, no that is not & that person comes back to say they have been diagnosed with

ms.

 

so although this is a great place to come for company on your journey, with loads of good advice answers to is it or isn't it are 

unlikly to be possible.  

 

My understanding is that getting diagnosed without 'medical' evidence' is very very difficult.

 (Ms like symptoms don't seem to count).

 

sendind big hugs. I really hope your next four years are less challenging than your previous four years.  

If you accept/ belive your gp that all these things have been caused by stress (it is possible) then cool.

 

if you 'feel/think/belive' that it's not a reaction to all the stress but ms you really need to go back and see your gp.  (How 

will you ever relax, if you have not had ms medically ruled out?).

hugs & good luck