[sneaky]

Hi I'm new here & not yet diagnosed not really sure where to start so I guess the beginning is best so I'll apologise in advance if this goes on.

I was diagnosed 10 years ago with Raynauds & rheumatiod arthritis, saw I rheumatologist who thought the rheumatiod arthritis was incorrect diagnosis which at the time made me feel like a hyprocondriac.
so whenever I was experiencing joint or muscle pain I tried to ignore it & didn't return to the doctors with any symptoms that presented over the years & kept things to myself, apart from servere chest pains which put me in hospital on several occasions & to get antibiotics (not penicillin as I'm allegergic) for recurring kidney infections


I had to change doctors with a house move who didn't know much about Raynauds but showed concerns about some blood tests that were taken but never shared the info??? Changed doctors about 2 years ago. I'm 32 now nearly 33. Although I'm happy with the doctors I have now you never seem to see the same doctors twice which means different doctors see different symptoms & nothing seems to get linked together.

that was until Nov 06 when a number of symptoms presented at the same time. I could barely even get out of bed & I felt like I'd got the flu. I was so tired, no energy but also the muscle & joint pain & swelling aswell as headches, blood disorder presenting itself visably by brusing on my arms & legs. my Raynaud attacks were now more frequent & more prolonged & I was also experiencing horrible facial blisters.
My doctor immediately diagnosed auto immune problem & sent me for blood tests & results have concerned the doctor. something is very high?? & she has referrred me to a rheumatologist but after my last experience I am very reluctant to go as these symptoms come & go & I haven't had them all at once again .

Knowing that it's an auto immune problem thats how I came across this site & Lupus seems to fit, so before going to the rheumatologist I revisted my doctor just to see what they thought but yet again saw a different doctor he said he could find no correlation between my syptoms & Lupus so I was wondering what you folks thought.
Oh & my face blisters in the sun so I never go out with out make up

 

[Katharine]

Hello Sneaky and welcome,

It certainly sounds like seeing a rheumy is a good idea. From what you say you do have many symptoms which could be significant for an auto-immune disease.

Lupus is a very complex disease and is the disease of 1000 faces. The symptoms can vary so much from one person to another. It is very difficult for us to see any link between symptoms to start with. Writing a list of your symptoms, even those that seem unrelated, is a good idea as it helps you not to forget things when you see the rheumy.

If you look at the top of this section (not yet diagnosed) you'll find the criteria and alternative criteria for lupus. That may help you to see if your symptoms fit.

Sorry if this is a bit unstitched, I'm having trouble concentrating this evening :hehe:

I hope it goes well for you, keep us posted,
Katharine

 

[heavenly]

sneaky

Sorry for the confusing & tough time you're going thru. Sounds like you're in the common vicious cycle of the rotating diagnosis. :umm:

Hope your Rheumy appt. goes well.

 

[raggedyann1]

Hi Sneaky,

Welcome to the Lupus Site. I am sorry to hear about your bad experience with a rheumatologist. Unfortunately that is not new around here. It seems some of us get diagnosed very quickly and others that take months and months if not years. I would encourage you to see a rheumatologist. My guess is that it is your ana that is so high, it is one of the standard screening blood tests used by doctors to see if a connective tissue disease is the culprit. Google the Rheumatologist before you go see him. That way you will find out if he has written any medical papers and/or participated in research.

I am not sure where you live so it is difficult to help guide you in the right direction to find a rheumatologist that is a lupus specialist. We come from all over the world here.

Let us know what you find out.

Take care,
Karen

 

[sneaky]

Thankyou so much for your responses there really is a lovely community spirit here very friendly & supportive

I've postponed going to see the Rhuemy at the moment one reason being I'm not too bad at the moment I'm coping & also don't really want to admit I'm ill the other is I really couldn't handle it if they say again that nothings wrong as I'm not going mad but sometimes I feel that way!! One minute I feel fine & the next I take to my bed because I feel so ill & I'm in so much pain but sometimes within a space of 6-8 hours I'm fine again other times it can be days & weeks

I live in the UK West Midlands