View Full Version : Running around in Circles- What do I have??????

04-21-2010, 04:34 PM
I am completely lost at this point. I feel like I have been running around in circles just to finally figure out that I am going no where fast.

I have felt bad for a long time but back in Nov. things went downhill fast and I went to the ER thinking I was having a heart attack. 1 Cardiologist, 1 Pulmonologist, 1GP later and I was told to go see a Rheumatologist because my ANA was positive. I go to the Rheumy (covered in rashes BTW) who says that I had Lupus before taking a test one. “Classic Lupus” was his term. So after I begin to breathe because, although I didn’t want Lupus at least I knew what is wrong (I thought). I head out to give blood (again). I start the Plaquenil twice a day and head back to see him in 2 weeks. While I am waiting to go back I continue to get worse. I hurt, I can’t breathe, I can’t move. I can’t remember anything. I get lost and confused. I am not myself.

When I go back to his office he says that I don’t have SLE but that I do have SCLE Lupus which is really just the skin and not the organs. He also said that I have Fibromyalgia. I then ask why I can’t breathe and why my joints hurt and why I can’t remember things if this is just a “skin thing”. He said that the joints and such would be from the SCLE. SCLE could have all the symptoms of Lupus except those that affect major organs. Well this is good news! If you have to have a Lupus this is the kind to have! He put me on 5 mil of prednisone every day and sent me on my way. My meds (at this time) are Pred. Plaq. Lisinopril, Protonix, Flonaze, Singular, Advaire, and Albuteral. In November I took none.

I continued to get worse. I begin to smell things. Strange things. I would smell burning rubber out of no where. I would start asking people around me “can you smell that?”. No one ever could. Other, very embarrassing things began to happen and I called my GP who sent me to a neurologist. MRI was done and the test for neuropathy (I forgot to mention all of the numbness and tingling). Everything seemed OK. We talked about doing a test for seizures but how do you test for that? How would I know when one would come on? I went back to work even more frustrated.

When I got back to work my boss said to me “Seizures? I wonder if that is what those things are when you kind of zone out on me and can’t talk”. HA probably so but again I said “ I don’t know when they are going to happen so they can catch one and they don’t seem that worried”. Then it happened. Major seizure on my office floor. EMS called. Taken to the hospital. On Seizure meds. DL suspended. Rhumy has now taken second fiddle to my Neuro. GP and Rhumy says “I think you need to talk to the Neuro about going on perm. Disability. *sighs*. Then I ask some question that I can’t remember now and the Rhymy says “Oh, these things aren’t related”. EXCUSE ME? The fact that most of my symptoms are the same just more extreme as when this started and the fact that I have 9 of the 11 criteria for SLE have nothing to do with my seizures? I have 9 of the criteria but my blood work isn’t showing the things they should although I have all the rashes (discoid and butterfly) as well as the entire list NOW including seizures and you want to say the two things are not related? Can someone explain this to me, please?

I am lost. I am confused and I am really tired. I want to be pissed but with the bronchitis I don’t have the energy.

04-21-2010, 09:25 PM
I'm sorry that you're getting the run around from your medical "team". Your rheumy sounds uninformed. Perhaps you should try to get a second opinion.

I hope you feel better soon and get the treatment that you need.

04-22-2010, 07:32 AM
Please try to find a more compitent doctor who will listen to you and have compassion and understanding. It is tough when you think that maybe it is all in your head and no one listens to you or takes you seriously. I am very thankfull i have a wondefull rhumetologist. Hang in there and we are here for support. Bonita

04-22-2010, 10:29 AM
Hugs and Good thoughts.

They are right. Find a new Rheumy.

We are here for you when you need us.


04-23-2010, 11:50 AM
The only way that we can explain it is..Get a Rheumy who knows what the H#@! he is doing. Seizures are one of the most common signs of CNS involvement with Lupus!!! So, as you said, the are ALL related!!

You appear to be pretty informed about Lupus and its symptoms. Stick to your guns, do no let these uninformed doctors dismiss you and insist that they see that all of these symptoms are related (in spite of the blood tests that they are relying too heavily upon).

I wish you the very best and keep up the fight. We are here for you!

Peace and Blessings

04-23-2010, 12:02 PM
I don't know why I am so emotional today but your post made me cry Susie. I KNOW I am not crazy and I know I didn't go to med school but even I know what they are saying isn't making sense. To have people say they understand means the world to me. I really do appreciate it

04-23-2010, 02:54 PM

I feel for you. It's horrible to be at this stage of the medical community's development in their understanding of Lupus. this is the very reason we have to keep pressing forward and get the awareness level to where it is for diseases like Aids. Everyone used to think so many things about Aids that we now kinow are not even remotely true, but, it took a long tmie, and a lot of people raising their voices before the truth was widely understood.

Keep coming back here where we know you aren't crazy.

melly c
04-23-2010, 03:09 PM
Hello sending you warm hugs
so sorry see way your being messed about at your ehalth expense,yes go for 2nd opionion your enititled to best care not slap dash low standard type care.
and your knowledge is great a bonus,hope you feel some imporvemnt. take care let us know how it goes for you.
melly c

04-23-2010, 11:21 PM
I was diagnosed with lupus... to my understanding... only one positive blood result was enough, they dont consider the blood tests to be the main component in diagnosis. Further tests did show positives for something that confirmed lupus, but I was diagnosed on merely facial rash, joint pain, fatigue, sun sensitivity (UV specifically, when I have a flare, an artificial UV light makes me BLACK OUT :( I lose vision, get dizzy and i guess the next response would be completely pass out, but I remove myself before then), anaemia, confusion and ANA. Prior to diagnosis I had had a pulmonary embolism (multiple), tumour and then haemorrhaging. My blood simply isnt stable, but in a fun way :) I never know which way its going, it could be clotting too much or too little, who knows! LOL One day I might get a surprise and drop dead from a fatal embolism... or bleed to death from an internal haemorhage. Its not something that can be predicted or maintained so no point worrying about it.

ANYWAY... my point is, diagnosis for lupus if you have say, a butterfly rash, should be pretty simple. It has to be the most definitive sign.

I wonder if anyone else has noticed... docs just dont seem interested in your nuerological symptoms? They dont care about my headaches, my intense UV swtich off, my confusion... I think its too hard for them so they ignore it.

04-24-2010, 01:47 PM
I"m new to the group, but wanted to voice my concerns. You definitely need a new rheumy. It sounds like SLE to me and not SCLE. Did they ever do a CT scan of your lungs and an echocardiogram on your heart? I think they need to do those to rule out any involvement there since you're having breathing issues. I hope they've ordered those tests on you. If not, find a doc who will order them on you as they need to be done. I too was told I had SCLE by a dermatologist, then the first rheumy said I had features of both Scleroderma and Lupus. I then saw a new specialist who then diagnosed me with SLE and put me on the proper meds. The only odd thing about me is that my labs have never shown an elevated Sed Rate which indicates inflammation......go figure. Anyone else never had an elevated Sed Rate?

04-24-2010, 03:16 PM
I have had all the tests on my heart and lungs but no one seems to know what the issue is with them. I will admit that things were better once I started the steroids until I got bronchitis (sp). Since then it has just been down hill with that.

My sed rate is normal on all my tests. My CRP is VERY high but my Sed is not. I think all of you have convinced me that I am not being silly and I am going to get a new rhyemy

04-25-2010, 03:31 AM
Just wanted to add that for the past forty odd years I've had bronchitis/pneumonia issues; this winter I started plaq and did NOT have my bout. There is always hope.


04-25-2010, 10:07 PM
I have never had an elevated sed rate, its always my CRP that is elevated. My rheumy says that is normal for me. After reading about some of these docs, I am so grateful for mine!

04-26-2010, 05:46 AM
Your sed rate is normal but your CRP is high and your doc is OK with that? I really need to find a new doctor!

04-26-2010, 09:42 AM
hi tgal,

i hope you are feeling better today. I agree with saysusie,,,,,it might be time for you to find another rheumy. When i first got sick, i was seeing "the top rheumy" in atlanta....ha ha ha.....he was a total disaster for me. I ended up taking my files and walking out of his office. He showed no compassion, and we were getting no where fast. I started calling around, asking questions, and found a wonderful rheumy.

Stand your ground....you are absolutely correct in your belief that all of this is related. Whenever i mention CNS issues or any other organ concerns, she quickly sends me to the appropriate specialist so that we can rule out other problems besides Lupus. You need a good dr. on your team, and keep looking until you find him/her.