[lisa292003]

Now I know I must be crazy, I just rang the GP again on my last blood tests all normal..

After my visit to the rheumatologist he mentioned some more blood tests to my GP to try, peeking at the list one was CA125 and creatine I think, in his letter he said I had Livedo reticularis on my legs and a erythematous rash on my cheeks and forehead that looked more like rosacea. He says I had 3/5s weekness in all areas but could detect no localising neurological signs. He goes on to say the situation is far from clear and as Lupus was raised given the negative ANA result and the normality of other blood tests points against Lupus, possibilities here are quiet wide ranging.

My GP said is quite possible ME but he got the glandular fever and Lupus wrong. Perhaps I am imagining all the symptoms. I am worrying that my GP will think I am crazy if I mention any other symptom I dare not tell him I have had sores up my nose and a few mouth ulsers this week.

I have had very little sleep due to itching my scalp is so sore and I have an aching back so much so I feel like it sometimes wont hold me up especially my head. I still cant eat without my tummy swelling up like I am six months pregnant and spend most of my time on the toilet. I get a really horrible sensation when I urinate like a srong achey/burney sensation where my pubic bone is dont think it is infection as it doesnt happen everytime I go.

Sorry bout long post, really, really fed up, what will they do with me now have me commited!
Lisa xxxx

 

[melanie ann]

:there: ((((((((lisa)))))))))

Hang in there, it's hard i know, it can take a while for them to get any dx right.. but you must tell the doctor whats happening to you, otherwise they really can't help...i know it's feels like it's one thing after another, and thats what sometimes makes it the scary part.... the not knowing, but you know your body, whether it's feels right or not....i can't help with medical stuff, new to this all as you know... but just keep pestering the doctor...i got to the point where i felt such a fraud going that i used to write it down and then hand it to the doc (normally in floods of tears) just so i could get everything over to them...
i really hope you start to feel better in yourself soon..... thinking of you
take care... big hugs....keep talking lisa xx

 

[Katharine]

Hello Lisa,

I'm sorry you're having such a hard time of it all. I do really understand what you're going through. I have, like many members here, had similar experiences before diagnosis.

The problem with some symptoms we may have is that they seem to have little or no connection to anything else. I thought I was going mad too but later found that many of my symptoms were quite typical for someone with lupus.

I'm afraid the only thing I can say is don't give up. If you feel ill you need to keep pushing until you find some sort of answers. Have you been to see a dermatologist for those skin issues? He might be able to find some relief for you and possibly order a skin biopsy which can also help determine a diagnosis.

Also, have you mentionned the burning you get when urinating to your GP? Even if you don't think it's an infection it could, potentially, be quite serious so shouldn't be ignored.

Is your GP supportive of you or do you feel he doesn't believe you? I know we can all feel like that at times because we start to doubt ourselves but some GPs don't believe you and that's not good as you need their support. I had one years back who said to me "so, just because your Mum has an auto-immune disease, you think you might have one?" - I changed GP and about 6 years later (including a two year remission) did finally find out what was wrong.

That two year remission was, of course, wonderful but it did make me think I'd lost my marbles. I thought I had completely imagined everything, that I had made myself ill with stress or something like that. Funnily those two years turned out to be the most stressful I have had since I was about 14 but they didn't make me ill again. That just happened, it all crept back up on me and then hit me with a bang.

Don't give up. There is an answer out there somewhere for you, it may just take time,

hugs :hug:
Katharine

 

[Lily]

Hi ((((((((((Lisa))))))))))) :hug:

I just wanted to echo what Melanie said in that you really do have to keep telling your doctor every little thing that is going on. The letter was not dismissive from the Rheumy, to my mind it sends the message across that he has an open mind at this stage and there is just not enough evidence to prove something like Lupus.

That evidence will come in slowly with the bits and pieces you give them during your follow up visit with Rheumy and with your ongoing visits with your GP. Even if there is no follow-up scheduled for the Rheumy if your GP knows that these things are cropping up then he will probably insist you see the Rheumy again anyway for re-evaluation.

It's an all too familiar road that many of us have been down, but hang in there, I know it feels hard to relate lots of little pesky symptoms constantly cropping up, but they all help to join the pieces of the puzzle together. If you don't tell them then they don't get a clear picture of how your day to day life is.

Stay strong, sending hugs,

love
Lily

 

[halfpintfl]

Hi Lisa, I am another one that thought I was really going bonkers in my mind. And it didn't help when I would go from dr. to dr. and all I would get is weird looks from the dr's. It took yrs, and every time I would hand in my list of things that were wrong with me, that hurt, and made sure that it was in my file. Finally, I found a Rheumy that still shook his head and said it was nothing, but if I wanted to return in 3 months, then I could. I did. We kept this every 3 month thing going for a few yrs, as at each appt. he would narrow down the list, and I would go home and keep reading and educating myself. Finally, he narrowed it to the only thing left and said it was Lupus. But making a pest of myself was the only thing that did it. Change dr.s if you are getting nowhere, do whatever you have to, it is your body you are trying to save. Sorry if I sounded like I was preaching, but I hope I helped. Be a pest, and be well.​