Vasculitis UK

Need avice please

Hi, I have been diagnosed with multiple sclerosis and Hughes syndrome after many DVT's and pulmonary embolism, I have been on long term Warfarin for which I self test

About 2 mths ago I started suffering vertigo

over the last 2 wks I developed a sharp never ending pain in back left of head made worse by chewing on left side and under chin, feeling unwell like Flu without the runny nose

I waited to see if it would clear up on its own but after a particularly bad night (can't lie on left side of head) I rang the Doctors

As there were no appointments with the doctor he rang me at home and arranged for me to see a physio next day and to have a CRP test with the nurse

Physio confirmed definitely not a muscular problem( after a good pummeling) Also seemed concerned I couldn't see a Doctor

Rang for CRP results which are apparently normal

I can't discuss this with doctor no appointments for 2wks Secretary said she would get him to ring me which he didn't of course

As the CRP test is negative , He thinks 'job done' no need to worry

However head pain still really bad, vertigo blurry vision

So what's my next move, Not had a consultant for last 5yrs GP is responsible for my care

I go to the Doctors perhaps once a year, dealing with things myself but this time I feel out of my depth

Has anyone any Idea what this could be?

Thankyou for taking the time to read my post


3 Replies

Hi mully, I don't know if you have looked up GCA, as some of the symptoms are similar it is also another autoimmune disease. I may be totally wrong, but you may like to check.


Hi Mully, GCA is a possibility although crp would normally be very high. The jaw pain it causes is cramping of the muscles when chewing hard foods.

Who diagnosed the MS and Hughes disease? Surely you are under the care of a neurologist or Rheumatologist. If so it may be worth contacting them instead of GP. You shouldn't be feeling unsupported and managing this on your own. Good luck, Runrig x

1 like

You could write to John, he maybe able to help. or maybe you could contact the Hughes Foundation at Guys and Thomas, they maybe able to help with some advice too.



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