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Pretending everything is fine...

New diagnosis and before diagnosis
#1

Hello everyone, I’m new to the website after being told to sign up by my very understanding boss.

I will try to keep this as short as possible!

About 6 years ago now, a work colleague was diagnosed with MS. Her symptoms came on reasonably suddenly and quite dramatically. It was awful to watch her deteriorate.

Fast forward 5 years and there’s me, for the 100th time, at the doctors for various symptoms. From bowel pain, weight loss to dodgy joints and UTI’s. The doctor always treated everything separately - there was never a link made.

Fast forward to about 1 month ago and I appeared to have almost all of the initial signs of MS. I tried to put that thought to the back of my mind, thinking that it’s impossible for me to have it if I knew someone else who has it.

The last straw for me happened about 2 weeks ago, when I went to the opticians for double vision. The optometrist said my eyes are healthy, but the muscles aren’t working together - I needed glasses with prism. I knew then that I wasn’t right and that I needed to push my doctor again for a referral (I had previously brought it up, but was ignored).

I saw the doctor and, although she was convinced it wasn’t MS and more likely to be psoriatic arthritis, she referred me to Neurology - warning it could take up to 18 weeks to see someone.

Since then my back is in chronic pain and I can’t walk without looking vaguely drunk! I was also convinced that my mattress was broken because I’ve been waking up in more pain than when I went to sleep.

I also (in the last 3 days) have new tingly sensations in my hands and face that feel like a loose hair tickling the skin.

I’m not sure if I need to speak with anyone again about new symptoms, or if I simply need to wait for my referral appointment?

I guess I’m just looking for some guidance or advice really - I just feel a bit lost.

#2

Hi,

If you feel that you cannot wait for an NHS appointment you can always arrange to see a neurologist privately. They can always refer you back to the NHS system for the appropriate treatment.

There are many conditions that present in the same way that MS does so don’t get fixated on MS in particular.

Best wishes,

Anthony

#3

Thanks Anthony, unfortunately I cannot afford any sort of private treatment - or I would certainly jump on it!

#4

hi jade

anthony has given you good advice.

i’d like to add that keeping a diary of your symptoms will come in very handy.

you can use it to make a timeline of how your symptoms have been which could help the neuro in his or her investigations.

carole x

#5

Hello Jade

If your GP thinks your symptoms are more likely to be psoriatic arthritis, I assume you already have psoriasis? Has your GP referred you to a rheumatologist as well as a neurologist? Or prescribed you a painkiller to see if it helps the symptoms?

If you are just waiting for a neurologist appointment, you could be delaying the correct diagnosis if your GP is indeed right.

Otherwise, Anthony is quite right, if you can’t wait for an NHS neurology appointment, and can afford an initial private appointment, try to find a local private neurologist who also has an NHS practice. That way, if the neurologist wants you to have tests, possibly including an MRI, they can refer you back to their own NHS practice. It’s the tests that really cost very large amounts of money. An initial private appointment is likely to cost something between £200 and £300.

Best of luck.

Sue

#6

Hi Carole, that’s actually not a bad shout! I’ll start doing a diary from today - thank you!

#7

Hi Sue,

I am currently under investigation for it, awaiting MRI results on my knee for PA. Rhematology won’t book me another appointment without another referral from my GP. They did give me painkillers but they barely touch the surface and they refuse to give me anything stronger without MRI reasults.

This is where it all started - I’ve had psoriasis on my scalp for 10 years, but has been 100 times worse over the last year. I don’t think however it could be linked to some of the symptoms I have (such as wee leakage and double vision).

I wish I had any money to put towards this, but I don’t even have a fiver! Thank you for your help though, it’s very helpful :slight_smile:

#8

jade

the wee leakage is easy to start fixing.

get your gp to refer you, or you can self refer, to the bladder and bowel clinic.

they taught me how to self catheterise which has saved me from many an embarrassing moment!

1 Like
#9

I get tingliness too, almost like a fly has landed in your skin. I also get a feeling in patches a skin that feel like your face feels after you have had an injection in your mouth at the dentist. The doctors call both altered sensation. It is dead scary to start with. Go to your doctors and ask for an mri. They told me I had had a mini stroke (which I knew wasn’t true) but it got me the mri very quickly ( next day).

As for your friend (my heart goes out to her) there are lots of forms of ms, not all life altering and lots of new treatments.

#10

Hi D9nicola, that’s exactly how it feels! It comes and goes randomly and it’s so irritating.

That might be worth a shot to be fair, I’d get the MRI quicker than the neurology appointment…

Yeah she has to have chemotherapy to keep on top of it bless her socks :frowning: