[diannachi]

Hello All,

I am new to this site & glad to be here. Hope someone can help. I went to GP w/sever upper back/neck pain, rt wrist/hip pain, heart palpitations, dizziness to the point that I felt like I was going to pass out, unable to sleep & kind of an "out of control" feeling, legs sometimes shaking etc. He thought maybe anxiety, prescribed lexapro(my body didn't tolerate this & vomitted all night). Then klonopin which is helping w/the strange feeling but not pain, etc. He ordered ANA (my mother has lupus). It was + & he referrred me to phys therapy & rheumatologist. Rheumatologist results were ANA+ 1:1280 anti-centromere pattern, dsDNA-indeterminate, ssa-negative, ssb-negative. He offered no further explanation, plan of action or plan to follow up. He called it my "dianna syndrome" & that was it!!! Phys therapy Dr. thought fibromyalgia. GP is now referring me to new Rheumatologist & does not want to give anything for pain or sleep until final diagnosis/decision. What now??? I still feel horrible, am drugged on klonopin & don't know what to do ??? Any thoughts??

 

[lazylegs]

Hello and Welcome.

You definitely need a second opinion. With your family history, joint pain, and positive ANA your case deserves further investigation. It may or may not be Lupus but you should keep pushing until you get an answer.

Did your GP order any X-rays of your neck, back, wrist or hip? Has your thyroid been tested? Were any tests done to rule out heart problems? Did the Physical Therapist check your pressure points to come to the possibility of Fibromyalgia? Sorry for all the questions, I just wanted to make sure each symptom is being checked on its own merit.

Take care,
Lazylegs

 

[diannachi]

Thanks Lazylegs

Dear Lazylegs,

Thank you so much for your reply. The physical therapist did test the pressure points & that's in part the reason that he thinks I have fibromyalgia & he prescribed Lyrica. GP wants to wait until rhema can thoroughly evaluate before I start taking this. I have not had any x-rays or tests to rule out heart problems. Do they do EEG's???? I really feel like I'm in a fog sometimes. He did thyroid & liver function tests & they were fine. I actually have an appt. w/another rheuma next Thursday, so hopefully he'll provide some more insight. I'm young & I just don't want to wait around & get sicker when I can possibly do something about it now. Any suggestions or possible questions to ask before the visit with the new rheuma?? Thanks again so much & I'm really glad to be here.

 

[Lily]

Hi Dianna and welcome Sorry for what brings you here though

With an ANA that high most Rheumatologists would have no doubt there is some sort of disease process going on. The key is finding a Rheumy with some knowledge of the connective tissue diseases. They should take a complete history, ask lots of questions about symptoms you have experienced now or in the past (they are all significant), a brief family history (yours is significant) and do a thorough physical exam and run a lot of further blood tests.

Make sure that you have a copy of your positive ANA result to take along to the new Rheumy.

The next step is to make sure you do have a brief history of symptoms, mention your mother has lupus etc etc. Any other abnormal blood test results in the past will be helpful to him too, along with any abnormal urinalysis findings.

If you take a look at this link : http://www.thelupussite.com/forum/showthread.php?t=33123 it takes you to a page that explains common symptoms and other classification criteria. If you have any of these and he doesn't ask about them make sure you mention them during the consultation. However don't say you think you might have lupus, docs hate people second guessing them. Just feed him the facts and if he is any sort of doc he will do the rest.

Good luck and if there's anything else we can help with don't hesitate to ask

love
Lily

 

[diannachi]

Neurological Symptoms??

Dear Lily & Lazylegs,

Thanks so much for all of the info. New rheumy is supposed to be the best in NY/NJ area. I am a microbiologist by profession so it's hard for me to accept some of the "generic" "dumbed down" answers some docs give. We are all "experts" when it comes to our own bodies.

Just wondering if some of the neurological symptoms I'm having are related?? Very dizzy, sometimes disoriented & just "spaced out". I've never been this way.....have always been "super together". Now I just feel helpless, like my body is betraying me. I still have the desire to do things.....just scared sometimes because I never know when this feeling is going to come on. Any experience with this??

 

[Lily]

Hi Dianna,

Yes it's possible they are related. You can get that sort of spaced out feeling with either Fibromyalgia or Lupus - we call it "brain fog". The dizziness could be for lots of reasons but it too could be part of it depending on what your CBC is like and other factors.

Also I can identify with the feeling your body is betraying you, I think with any chronic illness it's very hard to accept and get your confidence back, set limits for yourself etc. But that will come in time, it's a learned process. Once you know what you are dealing with it will help that process too.

The waiting is the hardest............but it sounds like you will at least get though investigation with this guy. Good luck :luck:

 

[diannachi]

Thank You

Dearest Lily,

Thanks so much for the info. I've never dealt with anything like this before. If I've ever been sick....it's been a cold for a couple of days. Ear or throat infection you take a few antibiotics and BOOM in a couple of days all's well. Now this. I think I've been to the Dr. maybe twice in the last 5 yrs. Now, it really feels like I'm having to fight for my life. I don't think anyone from GP (who I love & have know personally for years), rheumy, or phys therapist knows what I'm feeling. It feels like they think you want the worse diagnosis possible. When all I really want is to feel better. Forget feeling like I did 5 years ago. I'll settle for feeling the same two days in a row!! Can't wait until Thursday! I never thought I'd hear myself "excited" by a Dr.s appt. Also, my poor, dear husband doesn't know what to do. I really think I've become a "B%*ch on Wheels". I know he's worried, but I just don't know what to tell him.

 

[lazylegs]

Hi Dianna,

When you say dizzy do you mean room spinning or are you faint, lightheaded and unsteady? I happen to get both kinds but the two types are very different.

Chronic disease is difficult on both you and your spouse. Quite a few adjustments need to be made. Open and honest communication is a must. No matter what you are finally diagnosed with both of you have to realize that on some days you will have limitations.

Good luck with your appointment on Thursday. Let us know what happens.

Take care,
Lazylegs

 

[diannachi]

Faintness

Hi Lazylegs,

The faintness is not room spinning. It's like I'm not getting enough oxygen & my head gets dizzy. I get a nauseated feeling & I feel that I have to sit down immediately or I'll pass out. I feel like something is wrong in my brain & I have no control over it. I never know when it's going to come but the klonopin does help keep it under control. Before, my legs & arms would tremble & my hands & feet would sweat. It's like a seizure without loss of consciousness. No one has offered any explanation of this other than maybe panic attack?? I don't feel that it's that because it's not triggered by anything. And I'm not under stress or depressed.......other than I'm just frustrated at feeling this way. I just really feel like it's my brain or heart. I've not had a CT or MRI although I feel that this could be helpful. What do you think??