Possible Sjogrens Disease

I would pay out of pocket and use goodrx. My thyroid med isn’t covered under my insurance and I pay a lot for Tirosint. I have many allergies to fillers in meds.

so, u said Tues ur big day-good luck!

Thank you!

@mothermary1 Good for you for walking out and reporting him! I had tinnitus in my left ear from an air blast to my ear about 27 years ago . Now in both ears, I notice mine gets louder when my necks flared. I got hearing aids last year and was told they won’t help with tinnitus well they were wrong when I have them in I don’t hear the tinnitus. I wish doctors would listen to us I had a lumbar fusion 2 years ago 4 weeks later someone twisted me, then the next week his NP said it might be a set back but you can lift , bend, and twist so I went home and bent down to dry my lower legs and got a burning sensation that never went away. My pain got worse so I went back to the surgeon being pushed in a wheelchair because I couldn’t walk that far. I told him I could rub my tailbone and the pain goes to my testicles and also the inner thighs are supposedly danger zone if they get tender all he says is no you don’t have that ( never got me out of the wheelchair or touched me to see) I’ll be 53 next month and have been disabled because of the jerk not further checking me for over 2 years. All he said was get a spine stimulator . I seen 2 other surgeons whom looked at the same MRI he did same thing get a stimulator. I finally went to Mayo Clinic and found out I had a screw loose in my back not my head but told to leave it alone .

Had my appt yesterday with a new Rheumatologist.
Ordered new bloodwork at a different lab.
So nothing new at thos point.

I had tubes in my eyes to hold tears. Every 6 months, Medicare covers. I use prescription toothpaste and dry mouth mouthwash. Nothing works.
I’m a very rare case. I think this is partly the reason everyone hesitates.
June 2020 in Boston by a very reputable neurosurgeon I had a 3 fusion cervical spine surgery. It took 7 hours. My bowels never woke up from that surgery. I have tried every prescription on the market because they were hoping a med or combo would work. The last to be made is called IBSrella, it also didn’t work. I was scheduled twice for a total colectomy but backed out and here I am almost 5 years later with a colon but living on 20 OTC laxatives, enemas and suppositories and if I’m lucky I might pass unusual looking stool 2 maybe 3 times a week. I just think the anesthesia killed my bowels never which can happen but rare.
I have a lot of other health issues as well.

I'm negative for Sjogrens but kept getting scratched corneas and scleritis. My eye specialist put me on Vevye (immune suppressant drop) and Miebo, a prescription treatment for dry eye, and I think that combo is really working for me. No more scratched corneas and my eyes don't feel like there's sand in them now.

Extreme weakness in the hips is often seen with myopathies (polymyositis, myositis, and dermamyositis). Two weeks ago I had a severe flare when I tried to taper from Medrol and wasn't able to walk (back on Medrol now and my legs have resumed cooperating). I'm still waiting for a myopathy panel to come back from the lab, but meanwhile my new rheumatologist has me seeing a neurologist in a couple of weeks to rule out anything neurological. I understand an EMG will be done. Perhaps your doctor might refer you for a neurology consult given your extreme weakness. That might help rule some things out or shed more light on what's going on. I'm so sorry, it's hard when you want answers and don't have any.

tx 4 keeping us posted. my labs usually back in bout wk. let us know about them

Yes I do for many meds. I don’t mind. I can only take Tirosint. My Endo sent a letter to Medicare to say it’s the only one I could take due to side effects of others and they still denied it.
I’ve been paying for 5 years.

For my constipation, specifically, I take one Linzess 290 mcg (prescription), 2 gelcaps of stool softener [Bisocodyl] (otc) and one extra-strength gas-X with breakfast. At lunch, I take one more stool softener. If I go for more than 5 days without a b.m., I force myself to have diarreah by taking 10 mg Colace (otc) with my other breakfast meds. This causes about 6 days of multiple but quick attacks of diarreah, but not enough to empty out. If it doesn't work, I up it to 1 Colace at Breakfast and 1 at bedtime. And I wear a pull-up, and put a pad on the mattress. Once I've suffered thru the 6 days, I drop the colace, and my body will switch back to my happy normal of 3 days constipation, 3 days diarreah, until everything stops up again. Don't give up! And your GI has, I hope, sent you for a Motility test???? Good luck.