Results are back

[yorkshiregirl44]

Hi everyones,

I posted a short while ago that i was having tests for a carcinoid tumour, im happy to say that the results i had jave all returned negative.

Moving on iv seen a neurologist who is testing for myositis and he said if the tests come back negative then i have myopathy due to my thyroid disease.

I am wondering if anyone has been diagnosed with either or both of these.

I feel that my problems stem from my OA, the weakness i expereince is often related to the position im in. I also still have the feeling that my muscles do not relax and keep going even when at rest.

Any thought please

Thanks

Christine

[nomoreheels]

I don't know the answer to your questions Christine sorry but wanted to say I'm so pleased the tests are negative, that must be a relief. I hope the next ones show clearly what's going on, everything's crossed for you & again do let us know. x

[yorkshiregirl44 in reply to nomoreheels]

I think the tests for Myositis will be negative which is a good thing. The hardest thing is trying to get my point over that i believe alot of my weakness is coming from my spine, mainly cervical spine.

Thanks

Christine

[hatshepsut]

I have no experience of these problems, just wanted to say how glad I am that the tests came back negative. I hope someone else can be more helpful! M x

[yorkshiregirl44 in reply to hatshepsut]

Thanks.... it was a stressful time waiting for results. i had everyone of the symptoms so it goes to show not to jump the gun.

My daughter made me laugh she said we will just have to be positive folllowed by we should prepare for the worst.

Thanks

Christine

[Hidden]

I did have a look because I know of someone with Myosotis and wanted to learn more. I found this link:

mda.org/sites/default/files...

I wish you best of luck with the results - hope things become clearer to you find you can deal with the outcome. Sometimes the worst is not knowing what is causing symptoms and when you know it's easier to learn and adapt your life accordingly. Take care and please keep us posted. Tx

[yorkshiregirl44 in reply to Hidden]

Yes it is the now knowing...and the endless appointments.

Thanks

Christine

[Hidden]

I fully understand Christine. I'm going through a similar process myself with a very rare form of Vasculitis. I hope it can be ruled out because untreated it is life threatening. If I do turn out to have this then I won't be as stressed out by this discovery as I am presently by not knowing and by the many vague symptoms which are presently falling under the banner of my RA.

So hang in there and I will look out for your future posts - which I hope will report the best outlook or most positive outcome possible. Twitchy x

[yorkshiregirl44 in reply to Hidden]

Hi Twitchy,

The wait can be terrible, suspecting and thinking the worst.

I dont know about you but i loath going to the doctors now as i have so so many symptoms and im sure they feel that i am making them up as i go along.

I was given a fibromyalgia diagnosis a while ago and that seems to block the rheumy from looking for other causes for my problems.

How are we suppossed to discuss all thats going on in an appointment no longer that a few minutes..its so frustrating.

What has been really helpful for me on these sites is that often conditions do overlap and definative diagnosis can take along time.

Iv read a little about vasculitis but dont know alot about the individual types other that blood vessels are affected.

Are they susspecting that the type of vasculitis is part of RA or two separate conditions.?

Christine

[Hidden in reply to yorkshiregirl44]

They don't say - just that I have an autoimmune disease and for now it's called RA. No mention of Vasculitis from my rheumy or GPs ever. But they do all seem baffled because of my high ESR and CRP despite lack of joint pain or swelling - so they can't dismiss as Fibro or ME.

I don't really blame them for not considering Vasculitis as there are many types and most have skin involvement which makes it much easier to identify. However the type I am wanting them to rule out is rare - only 500 a year are diagnosed in the UK so they may never have come across it before.

It would explain many longstanding and recent symptoms and it often masquerades as RA in the early stages. I'm hoping like mad that I don't have it of course and have never broached it with GPs or my rheumy for fear they will think me a bit mad. I give them clues though in form of a bullet point list of symptoms.

But the Dentist and maxillofacial surgeon have been told by me that it's my concern because it usually affects the teeth and jaw and ears before the lungs and kidneys.

Like you I have reached the stage where I'm too embarrassed to mention yet more symptoms to my GP - although it tends to be the same long list of symptoms which just rotate in terms of severity now. Thank heavens for some continuity at least!

I have very recently spent a week in hospital with an acute abdominal sepsis and just before that had flu followed by pneumonia so they can't really tell me, as they've done in the past, that I am just too well to have anything as serious as Vasculitis. Every cloud has a silver lining eh?!

I know it's great news that you don't have a tumour of course - but I think people don't always realise how

many other scary diseases there are to worry about. I do though so you aren't alone. X

[yorkshiregirl44 in reply to Hidden]

Hi,

I know nothing about RA other than the bits a have read on here. Do you feel unwell in general..i had high immflamation markers before i was diagnosed with crohns many years ago and felt poorly..long before i had any bowel problems.

Iv got a doctors appointment in the morning which is a follow up from having the tests for a carcinoid tumour. I dread it and when im feeling really stupid with the endless symptoms i just remind myself that they are real and something is not right even though i dont know what is wrong.

I hope they find out for you what is causing your symptoms and hopefully it will be something with a good outlook.Like you say there are so many conditions many that most of us have never heard of or doctors come to that.

Let me know how things go with you and i will do the same.

Christine

[Hidden in reply to yorkshiregirl44]

Just posted with latest drama Christine. X

[summer32]

pleased to hear it wasnt a tumour!

[yorkshiregirl44 in reply to summer32]

Yes me too...thanks