tpapik

f/u yes i have lupus

Okay anyone here have breathing issues that start and you cant seem to get enough air? lasts about 2 weeks then im ok again ( atleast the first time anyway) I am in the middle of breathing issues to the extreme right now. someitmes i just cant get enough air , other times tight chest.

Anyway I believe it is the Nadolol I am on (nonselective betablocker) I did well the first 4 months but then in June hit with breathing issues. I had no idea why as I never EVER had breathing issues in the past . (well before POTS anyway) But I also have Lupus so breathing issues scare me and I had a chest xray, CT chest, and PFTS ( awaiting results of PFTS, but chest and CT good) Anyway I convinced my doctor to switch me from Nadolol (nonselective beta) to Atenolol.

I want to know how everyone does on atenolol? anyone have breathing nissues on it?

I dont even know if the Nadolol is the reaseon

and yes I am aware that if you have breathing issues with betas you shouldnt be on them at all- but im willing to try the selective one that focus's more on Just the heart and doesnt hit the beta receptors of the bronch. Anyway what are all of your thoughts?

and any advice or others with breathing issues I welcome too

Hi. I am from Ohio Yes I have been to cleveland clinic and yes ive seen Jaeger, and shields , anyway a ihave doctors out of university and want to see a POTS speicalist that is out of University Hospitals. had anyone seen Dr. Koontz? do you like him? does he do EKG's and Orthostatics? For those that have a neurologist do they do ekgs and orthos? prescribe your meds?

Also from NE ohio anyone know of any other good POTS doctors that are not out of C.C

I had something called polycolonal gammapathy come back..... sign of lymphoma , and I have 2 swollen nodes...... oncologist apt Thursday at 3

DR said I had polycolonial gammapathy, and now I have to go see an oncologist :'( . I guess it means I could have lymphoma or another type of cancer............can this be over?

my brother in law whos now 19 was diagnosed with severe POTS at 17..... its not that un common as most may think

new symptom

I cant catch my breath! if I lay down I feel a little better- sitting gets worse- standing the worst! ive been to the ER twice in 2 days they look at me like im crazy because all tests came back clean!? ive been under LOTS of stress........ anbody have this or know how I can help myself with it

After a month wait to a wonderful Rheumotology doctor out of University Hospitals. I had a bunch of blood draws on Friday. I just got a message from her; stating this "By the looks of our lab results- I am strongly suggesting you have lupus; and this may be the answer to all the problems you have been having over the last 6 months" here were my symptoms

POTS (obviously)

Back aches - and I do not mean Low back pain. but full out "my spine feels like its inflamed"

pain - achiness in my dominant hand and wrist (tolerable)

pain/achiness in my hips (tolerable)

low grade fevers for unknown reasons . .

flu-like symptoms

swollen lymph nodes in my neck

sore throats

blotchy areas on my skin that didn't itch - they just ..... come and go. especially in heat.

lots of weight loss- IBS symptoms.

Fatigue

I am awaiting a return call from her. As all I know is from my message she gave me, I want to know more obviously and she wants to start me on Plaquenil.

Honestly I am not surprised by the diagnosis. Even though I do not have the typical Rash. Or massive joint pain from the beginning (though I notice more now) . This all started right after pregnancy- Hence the start of the flare where most autoimmune happens.

I just want some input from other Lupus members.

Did you have weight loss as your symptoms prior to your diagnosis no matter what you ate.

did you have the typical "rash" - because I did not.

Doctor wants my to be on Plaquenil - how long did it take to help subside symptoms when you started it (specifically I need my weight back)

The office is closed now - that I got the message from - so im sitting here kind of clueless.

Thanks

Tiffany

<3 praying for you

i know many of you have gone longer than I have. with POTS. I was diagnosed in November im 26. Last May I found out I was pregnant- June i started bleeding - it didn't stop- admitted to hospital after water broke docs freaked out gave me Vancomycin, Zosyn, and Zyvox bc they thought i had an infection I did NOT! (i swear this is where the belly problems started) October Nora was born- End of October Nora died- 2nd week of November POTS diagnosis- Seen Dr. Jaeger - negative skin biopsy negative TST negative vasvular test. Negetive Neuro exam. Negetive MRI. Negetive CT angiogram. Negetive Pancreatitis Negetive colonoscopy - Gastritis in stomach - confirmed with EGD. Negetive paraneoplastic autoantibodies. IGG a little High, Tryptase- normal..

Now. I eat- im hungry - i eat im hungry lost 19 lbs since November

Strep throat- had antibiotic- still sore- now cold sore- swollem lymphnodes in neck, doc says im OK. put me on steroid for a few days suppose to start today

Just found out my work wont allow me intermittent FMLA- its a long story- but im 2 days of calling off away from being fired as a RN.

- found that out today

More testing- sugar normal thru hemoglobin A1C panel

Thyroid- had nodule - biopsy normal- retest ultrasound and thyroid levels in May

antithyroid antibodies - Negetive

ANA 1:80 speckeled rheumo doc apt finally on Friday- im freaken out.

Found out I had milk Allergy- Okay?! thanks?

Now on Wellbutrin, Nadolol

Intragrative Doc puts me on a very high dose of probitoics and enzymes

GI doc has no idea whats wrong with me

wont order hydrogen breath test.- wants to do a test he hasn't don't in "15 years" but cant find a lab that will do it.

Sick of the throat problem

Sick of always feeling hungry

I don't want to keep losing weight

I want answers

I am not nauseated I don't feel FULL - im just the opposite of gastoparesis

I hate my life officially :-( I want to give up.

- I want my baby back........

..and I want my baby back.

just venting

Tpapik, Some of the symptoms you've listed are concerning. The fever, weight loss and the sterratorha. Have they checked you "total quantitative immunoglobulins"? With the sterra is that just fatty stool that is associated with celiac disease or are you have symptoms of pancreatitis? In your other post you said you were in the hospital, is that because of these symptoms.

You may be fighting some kind of infection or autoimmune disease. What are you docs looking at.

I can't believe your having to deal with all this after such a difficult loss. I pray they will get to the bottom of this for you and you feel better physically. I know from my own experience the emotional stuff will take longer.

That's why I am in the Hospital- im a nurse so - I understand most of it. no I don't have pancreatitis no I don't have celiac disease they don't know what I have- as for the fever I had strep throat- its slowely going away. I have weight Loss BECAUSE of sterrahorea. that means my body isn't digesting fats- im going for a second colonoscopy today. I am being followed by what I believe is good doctors- ive lost a total 19 lbs in 4 months - some takes part in that was baby fat some is I was nausteaed when I was first diagnosed some was well my underlying unknown cause- I had an ANA 1:80 speckeled- I see rheumo soon- My Cardio things my dismobility in my bowels secondary to POTS causing malabsorption. Another thinks Small bowel overgroweth. we don't know. I was tested for all the IGG's so far and those are all normal, not IGE yet. I have had many a tests. RUQ ultrasound CT abdomen/pelvis, echo, EGD, colonoscopy, MRI brain, CT angiogram chest, many blood works, tryptsase, Xray of belly Xray of spine, thyroid biopsy, - been tested out of mastocytosis, thyroid cancer, adrenal tumors, there is no pancreatic masses; so no I don't know whats going on. I also had labs drawn for paraneoplastic auto antibodies, negative, I have had skin biopsys and thermoregulatory sweat test that was negative for any neuropathys. so this is where we stand- I am not ignoring my symptoms I promise if you have any other ideas it is appreciated im not scared

shakingtheowl- I also had a placental abruption- I lost her at 6 months prego- she lived a week. but I bled my whole pregnancy- had a subchrionic hemmorage that turned into an abruption and emergency c-section

I dont know how to do the polls really. I was jut trying, im stuck in the hospital right now so it will only let me do so much intereaction via dinet for some reason

my pots started after birth- baby passed away 2 weeks later POTS for this girl. BUT I have other symptoms. low fever, anxiety, cant sleep , fatigue, weight loss, steratorrhea, TSH T7 T3 T4 levels all checked right after pregnancy and were normal. Had a benign nodule. Can I still have hyperthyroidism?? can levels change post pregnancy?

Sooooooooo I had an abnormal Qsart (which btw my docs tell me is not very good (docs at cleveland clinic- but wont say who) . Then I did a skin biopsy -NEGETIVE I was very excited about that - but still waiating for the thermo sweat test... anyone have a negetive skinbiopsy but + sweat test.. curious.

Sooooooooo I had an abnormal Qsart (which btw my docs tell me is not very good (docs at cleveland clinic- but wont say who) . Then I did a skin biopsy -NEGETIVE I was very excited about that - but still waiating for the thermo sweat test... anyone have a negetive skinbiopsy but + sweat test.. curious.

thats the question of the day..... if POTS gets better- can Gastroparesis get better too?

1. I think I atleast have Alkalizing Spondolitis, I fit it to the key the Chondoritis (sp) and the back feel inflamed sometimes so bad!

2. Abominal cramping/pain , fat malabsoprtion lost 16 lbs - had every gasto test under the sun wiht nothing diagnosed except gastritis. BAD IBS symptoms

3. im sick of this I was normal till I gav birth Rheumo doc appt april 12.

so ive had a positive ANA 1:80 speckeled. AND high sed rate at 29..... doctors dont seem concerned? should I further investigate?

so. tryptase levels as told in other post were 3.3- good.

I havent physically gotten the results of the "basic immunology panel" - but she told me it all came back "very normal" - so thats good i think.

thyroid autoantibodies- negetive- so thats good

But this is where I stand I have a GI doctor thats done so many tests-colonoscopys EGD's with biopsies right upper quad ultrasound. HIDA scan, Lipase, Amylase levels, SGOT levels, pancreatic antibody levels stool for blood , WBC, Parasites and Ova. ALL negetive

BUT came back positive for FAT malabsorption in my stool.

so question- can fat malabsorption be linked to MCAD even though tryptase and immunology labs and everything else are normal? I do not get flushing, raised hives, wheezing, anaphalaxsis, swelling anywhere, I am very sensitive to adhesive and will get a speckeled rash sometimes on my arm but doesnt itch...

but still possibly could Fat malabsorption be linked to MCAD?

if so what cna i do about it - im from ohio any mCAD Docs around ? that believe in MCAD other than just a tryptase level...

and diet MCAD'ers on?

the fat malabsorption is WHY im losing weight and the doc wants me to start an pancreatic enzyme ..... anyone else take these?

how does one get diagnosed with MCAS? ? ? I never had any anaphalactic schock problems breathing... flushing. just a rash here and there mostly from tegederms.......

no masyocytosis/or mast cell leukemia like the silly doc tried to tell me- my Tryptase levels came back 3.3. Also all my immunology levels came back normal and there were no autoantibody thyroids that came back so thats good news on that end. I am also starting Dr. Blackburns cardio rehab at the cleveland clinic monday he stated that 80% of his patients are no longer "Potsies criteria" after 3 months , 10% show improvement of symptoms and 10% show no improvement (but stated those 10% most do not follow program, cut corners go to fast thru it wiwthout following directions). Oh and I had the thermoregulatory sweat test today :-/ I hated that test just as much as I hated the Echo

So I saw an illumonologist today, and because of my stomach issues and having an adverse reaction to morphine (a nice rash) she came out and told me this "I think you have mast cell leukemia" we are going to check your Tryptase levels" and if you have mast cell leukemia- that is a poor prognosis to live...]

... can you say

im crying like crazy ?!

wtheck

and chest x rays x 3 and a chest cardiogram

Racer- I have ahd about 30 EKG[s blood volume test Echo stress test. Halter monitors all came out normal- not sure if theres any other cardio tests to do.