The Lupus Forum banner
1 - 6 of 6 Posts

·
Registered
Joined
·
13 Posts
Discussion Starter · #1 ·
I am starting to think so : (
I will tell you all what I am going through and you tell me what it sounds like to you. I am a 32 year old woman.

Started about 4 years ago, I went numb on my right side, with horrible headache, they could not find anything, so they run a LYMES, came back positive, but when they ran the western blot not all bands were positive, so it was a false positive.
Numbness in right hand has never gone away. Right hand is always cold and blue, Symptoms from that point on just start adding and adding. Here's my list w/ dates and possible Diagnosis.

1.Shoulder pain- ongoing and they have no answer for that
2.Back pain- chalked it up to endometriosis- still never got actual answer
3.Endometriosis-had total hysterectomy(january 08) after having abdominal pain for 2 yrs... pain not gone
4.rash on my scalp that comes when shoulder and flanks start hurting
too many uti's and kidney infections to count (3 this year already)
5. round rash on arms that they said was either ringworm or flea bites, nothing took rash away, prednisone put me in hospital with kidney infection after i took it for the rash
6.swollen abdominal lymph nodes and swollen node behind ear
7. purple spots on my back (i googled this it looks like LIVEDO retic) this also is on my legs and upper arms
8. as of recently they are trying to rule out IBD, i also have h. pylori (and gastritis/ulcers)
9. i have gained 12 lbs in less than 2 weeks
10. In the 2weeks, everything has started to swell, i was awakened by my fingers so swollen my ring was turning it purple. My toes look like little sausages, my face and eyes also swollen along with my abdomen, along with constant nausea, low grade fever
11. In the past few days, I have developed a rash (blood looking spots) under my eyes and on my nose, along with bruises on my feet

I feel like someone threw me out of a plane or puhed me down a big hill. Everything hurts constantly and I am just at my wits end, I went to the ER and they act like I am some crazy person who just wants drugs or something. I have been through so much and I hate to be treated like I am crazy or making this up.
I decided this morning to take matters into my own hands, I made an appt with a Rheum. doc, I see her Wednesday.
I just want to start feeling like someone is listening, and that these symptoms mean something.
Any feedback is appreciated.
 

·
Registered
Joined
·
7,800 Posts
HI there Lucy :)

I'm sure that if you were crazy, you wouldn't be aware of it :lol: so that's reassuring!

You have done the right thing in taking an appointment with a rheumy. That does seem an awful lot to be going on. Do be sure to take photos of any rashes or swelling as they are notorious for disappearing just the day that you go to the docs.

Also try and make a list of your symptoms (I think you have already done so) for the rheumy.

If you take a look at the crietria and alternative criteria posted here in the not yet diagnosed section, it might help you to see if anythng fits.

Don't expect too much from a first rheumy appointment. It will mainly be a case of taking history, hopefully listening to you, and ordering a lot of blood work. In such cases diagnosis can take a while as these diseases are very complex.

good luck with that appointment and keep us posted,
Katharine
 

·
Registered
Joined
·
4,444 Posts
Definitely not crazy! Many here have felt that way at times though, or had doctors insinuate that.

Hopefully you've found a good rheumy, be sure to make lists of your past and present symptoms, and what doctors have already done. Take pictures of all that you can, rashes and saugsage fingers, etc. Expect a thorough history, a physical exam of all your joints especially and then a barage of blood tests ;)

As to your Lyme testing - were you ever treated for it? Do you remember what bands were positive? I had lupus first, THEN got Lyme. I believe I had a total of 5 bands test positive, plus 1 or 2 barely positive, and while I didn't meet the official CDC criteria, I was treated for it anyways because the CDC criteria are really for bean counting. I think I was 1 band short of meeting official CDC criteria. They are not for diagnosis and treatment purposes...

A good rheumatologist will be interested to hear about your Lyme testing, so you may want to bring copies of that with you to your appointment, as well as any other testing that was done already.

Best wishes for a great appointment on Wednesday; you probably won't walk out of there with a diagnosis but you will hopefully be on your way to knowing what is wrong with you.
 

·
Registered
Joined
·
13 Posts
Discussion Starter · #4 ·
I believe maybe 1 or 2 of the bands were positive, I did however have to take doxycycline still. I am just hoping that she at least gets the ball rolling on Wednesday because it is horrible to be in pain.
 

·
Registered
Joined
·
7,800 Posts
Hi again,

I just had another thought.

One good way of getting the idea of "pain" across to certain docs is to actually tell them what your symptoms stop you doing.

I am a teacher and, for example, my muscle weakness (from myositis) stops me writing on the board. If I just say my muscles are weak I get very blank looks. If I say how it affects me, they realise "oh, yes, that's not normal".

good luck with it,
Katharine
 

·
Registered
Joined
·
5,267 Posts
When I was reading your post, I was thinking.....hmmm story too familiar but at the end I was cheering that you made that appointment with your rhemo ! Good for you. You should take your health matters into your own hand because no one esle will. I hope that this rhemo is a good one and has some sort of treatment plan for you. Don't leave there without it. If this rhemo cannot help you, ask for somone who can.

Good luck and let us know how you make ou.
 
1 - 6 of 6 Posts
Top