i really dont know whats happening to me - Immune Disorders Message Board

michellemelia · 06-24-2004, 02:47 AM

Hi i really dont know what is happening to me for the last year i have had symptoms that come and go they last a few weeks then vanish ive had various blood tests from thyroid to anemia and i now think my doc feels im a hypercondriach so i really dont like going right symptoms i get very very tired cant even walk up a few steps without getting breathless my asthma gets worse i loose my appetite dont really loose much weight this is the 2nd time ive got these little blister like lumps on my hands i got up to 50 last time ive woke up this morning with 3 they are really quite painful i feel sick although not often being sick this time i also had a vast thirts blood sugar was normal but i was drinking up to 10 times the norm i also have severe headaches which go on for hours even wid meds the doc said it was stress but im not stressed he said oh u will be subconsiously great then a load of glands under my jaw bone swelled up he said it was tonsilitus but my throat and mouth were fine i also have the problem that with any change of temp my fingers swell become red with an itchy burning feeling it happens to my ears aswell ive had problems with my joints and been told i have hypermobility syndrome but that the other symptoms dont go with that oh and also if i blow dry my hair i get red rash type thing over my nose and cheeks and forhead this happens if i go out in the sun also i also get an ache in my kidneys although no kidney infection is detected ive been tested for arthritus but that is negative so i totally have no clue whats happening i am only well for up to a couple of months then it all starts again. ive even been worried incase the symptoms are of hiv im so desperate because i know there is something wrong for the last few times its happened when its gone ive thought oh it was nothing thats ok but it just happens again anyone with any ideas i would be eternily grateful. xxxxxx

lovemythreeguys2002 · 06-25-2004, 09:08 AM

Hi...I suggest you find a good rheumatologist and have some auto immune testing done. also, R.A. can be diagnosed without the blood being positive. I also would get copies of all the labs you have had done, you have the right to them by law.

Let us know....

Hewie · 06-26-2004, 09:51 AM

hi... ditto to lovemythreeguys post..

and has your primary care doctor (you said thinks hypochrondria) run tests like: a comple blood panel (cbc), blood chemistry, urinalysis, tests for mono, epstein barr virus, lyme, ana, etc. -- yet?? Any pcp can order these.

If he/she is not running these routine tests for your stated symptoms, then he/she should be. If not, get another doctor.. a rheumy or another pcp. OH! and I just thought - get a copy of for yourself of the results of these blood tests... Many doctors (my 1st did) just flip through them at your follow-up visit, say there are all ok or normal and then dismiss you... Get a copy for yourself! You have a right to them by law and I've found, often a pcp (I have a new one now!) will "say" all is normal when many things are not and should be followed up on even if they are only low or borderline abnormal and even if the doc is trying to keep you from getting too worried. It's your body and you know how you feel better than they do. It's your health. They are often too busy to care or just plain don't know as they are human and make mistakes just like us... This is maybe a bit long but it's just in case your current doctor has not run the proper readily avialable tests - I just don't like seeing anyone just brushed off like I was.. I learned the hard way! Maybe your doc is caring and already on the ball - just doesn't sound like it from your post...

ditto to keep us posted...=) hope this helps..

luv hewie

lovemythreeguys2002 · 06-26-2004, 10:51 AM

You have a right to them by law and I've found, often a pcp (I have a new one now!) will "say" all is normal when many things are not and should be followed up on even if they are only low or borderline abnormal and even if the doc is trying to keep you from getting too worried.>>>>>>>>>>>

I agree, this has happened to me twice! The first was thyroid testing, they told me I was fine, well, my antibodies were over >1000 and normal is <35, NOT normal.

It also happened with my first ANA, it was 1:80 and they also blew that off. To anyone reading this, get ALL your labs! I recently got every lab since 1996!

californiasunflower · 06-29-2004, 12:01 AM

Lovemythreesons--I noticed you added Lupus dx to your signature--or has that been there all this time and I just overlooked it? Anyway, obviously you were dx'd with regards to the connective tissue disease! I don't know what to say--congrats or what! Anyway, I am glad you know and getting treatment!

Michellemelia, I noticed that your descriptions of symptoms border on lupus, a vasculitis. I agree that you need to seek out a rhuematologist. Let him/her know all the symptoms you described on this board.