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Update and scared

Started by Lost163, August 01, 2014, 12:10:24 PM

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Lost163

So after test after test it seems that I may have pulmonary hypertension. I have to have a heart side catherization. I'm waiting to get a name for someone at U Penn.

anita

I'm sorry to hear this.  I was afraid to even suggest it the times I did, but I'm glad they are going to check for it properly and this way you can get a jump on treatment sooner.  I'm not up on all the latest treatments, but maybe there is something they can do to help improve your quality of life.

Please keep us posted and know that we are all thinking of you.

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

wildforwater

My thoughts and prayers are with you.

Please keep us posted.

Hugs,

Maria
Sjogren's; Hashimoto's Thyroiditis; Raynaud's Syndrome; GERD; Barrett's Esophagus; Gilbert's Syndrome; Tremors; SFN; Osteoporosis; Osteoarthritis; Lyme 2003 & Lyme/Babesiosis 2010; OB; Plaquenil; Evoxac; Restasis; Prevacid; Synthroid; Prozac;Estrace Cream; Vitamin D.

Jasper

I hope that when they get a definite diagnosis that they will be able to offer you some treatments that will help you.

Keep us posted. Thinking of you and sending wishes for the best for you.

ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

susanep

Praying for you. I was told this not too long ago, but after some tests with my cardiologist it turned out I didn't. I pray the same for you. They did tell me though that if I did there is more treatment for it than there use to be.

Hugs,
susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

finallyadx

Sending positive thoughts and prayers your way.

keep us posted.

Hugs

Kim
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Carolina

Dearest Lost,

You will carry on.

Life isn't easy, and you will figure out what to do.

Hugs,  Elaine
Female-Elaine,83-CVID-pSJS-WMD (Eylea)-COPD-Inter. Cys-PN-CAD-Osteoarth-SFN-Erythromelalgia-SIBO-PMR-Adrenal Insufficiency-Hearing Loss-Achalasia-Bacteriurea-Power Chair-IVIG Gamunex 50 gm-Medrol-Wellbutrin-Buspar-Gabapentin-Atenolol-Salagen-LDN-Lipitor-Premarin-Nexium-Om.3-Repatha-KLOR-CON-Maxide

Thea

Well, I hope not. But it if it is, I understand there is a fair bit they can do to improve your quality of life these days. Got my fingers crossed for you.
Inflammatory osteoarthritis, dx Nov 2013, Secondary SS (sero-neg) dx Feb 2013, Type 2 Diabetes (diet controlled), Post-Viral Syndrome (lungs); Hydroxychloroquine, Restassis, Omega 3 oils, Optive Advanced, Biotene, fluoride gel, MI Paste