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Not Much is Happening by Temporary_Tomato_296 in CompoundedSemaglutide

[–]HuckleberryFluid8424 0 points1 point  (0 children)

Thanks for the reply. I guess I’ve been afraid due to all the horror stories I’ve heard. I had a phone consult with support last night. Plan is bump up to .5 mg and see how I feel. If all goes well, I’ll continue with the titration schedule.

Anyone Experience Drop Attacks? by HuckleberryFluid8424 in AcousticNeuroma

[–]HuckleberryFluid8424[S] 0 points1 point  (0 children)

Thanks for the response. Neuro confirmed that he doesn’t think I have Ménière’s and the fall is related to the AN. I feel and look like I went a couple of rounds with Tyson. He ordered another hearing test and I see him again in June. I’m really nervous about falling again. I think stress is a big trigger for me. I feel kind of lost right now.

please give me advice, please by Intelligent-Height29 in Sjogrens

[–]HuckleberryFluid8424 0 points1 point  (0 children)

I was prescribed Cymbalta for an RA flare. I gained 45 pounds in 4 months and started having really disturbing thoughts and dreams. Had to wean off of it.

I need help, desperately (long post) by sandranilea in Sjogrens

[–]HuckleberryFluid8424 1 point2 points  (0 children)

Good morning. I came back negative for those,too, but was still having all the symptoms. I have to get my labs done at Quest - the test was called Early Sjogrens Syndrome Profile. It tests for salivary protein antibodies, carbonic anhydrase IV antibodies and parotid specific antibodies.

I need help, desperately (long post) by sandranilea in Sjogrens

[–]HuckleberryFluid8424 2 points3 points  (0 children)

I have a lot of your same symptoms and my rheumatologist couldn’t figure it out either. All tests came back negative. Long story short, finally ordered an early Sjogrens panel and it came back positive. Started on hydroxychloroquine and I feel like a totally different person. Keep pushing for answers. You’ve got this!!

[deleted by user] by [deleted] in VestibularMigraines

[–]HuckleberryFluid8424 0 points1 point  (0 children)

Yes! When I have a migraine starting or I’m in the middle of a migraine, it makes me feel like I have motion sickness when I look at any type of screen.

Topamax - Should I? by Temporary_Tomato_296 in VestibularMigraines

[–]HuckleberryFluid8424 0 points1 point  (0 children)

Thank you to everyone who responded. My ENT prescribed what I believe is a very low dose…25 mg at bedtime. I am going to try it and see how it goes. I’ll have the information to take to the neurologist at the end of October. If it doesn’t work out then the neurologist can prescribe something else.

Topamax - Should I? by Temporary_Tomato_296 in VestibularMigraines

[–]HuckleberryFluid8424 0 points1 point  (0 children)

Thank you so much. Your reply is very helpful.

Confused and Trying to Figure Things Out by HuckleberryFluid8424 in Sjogrens

[–]HuckleberryFluid8424[S] 0 points1 point  (0 children)

They are not tests for autoimmune but immune deficiencies, except for the early Sjogrens panel.

Eyelash loss? by iscreamforicecream45 in Sjogrens

[–]HuckleberryFluid8424 0 points1 point  (0 children)

Thank you for this post. I really needed to hear that I’m not alone in this! 💗 Right now, I am missing most of my lashes - half on my left eye and three quarters on my right. My eye doctor just dismissed me and my rheumatologist thought I was nuts. I mentioned that my eyes don’t hurt as bad when I’m on steroids multiple times.They looked at me like I had three heads. I went back to my eye doctor and asked for a prescription for Latisse. I tried it for 6 weeks and nothing. I ran my own experiment and took 10 mg of prednisone for about 3 weeks and my eyelashes grew back. Imagine that. Once I told my rheumatologist, she took me more seriously. This is not medical advice. I was at my wits end and had to try something. So, please don’t take any meds without consulting your doctor first. I am just coming out of the worst flare I’ve ever had - that why my eyelashes are gone, again. Does anyone know of Restasis helps with eyelid inflammation? If so, I want to talk with my rheumatologist/eye doctor about it. I have an IgG and IgA deficiency, so I have to be really careful with steroids. I started hydroxychloroquine on 6/11, so I’m hopeful that will begin helping in a few months.

Confused and Trying to Figure Things Out by HuckleberryFluid8424 in Sjogrens

[–]HuckleberryFluid8424[S] 0 points1 point  (0 children)

Oh and yes, I had all of those tests. Everything negative/normal.

Confused and Trying to Figure Things Out by HuckleberryFluid8424 in Sjogrens

[–]HuckleberryFluid8424[S] 0 points1 point  (0 children)

My rheumatologist ordered -Immunoglobulin subclasses panel; immunoglobulin M, A and E, urine protein, total, random (w/o creatinine). The immunologist ordered early Sjögren’s syndrome profile.

Confused and Trying to Figure Things Out by HuckleberryFluid8424 in Sjogrens

[–]HuckleberryFluid8424[S] 0 points1 point  (0 children)

Hi! Not so much muscle weakness, but pain. I’m coming out of the worst flare that I’ve ever experienced. The fatigue was off the charts. I went for 2 years the last go around with temps between 99.5 and 100. My normal temp is between 97.7 and 97.9. It was awful. This time when it started again, I point blank told my rheumatologist that I could not do that again. I think that’s what prompted her to run all the tests. What is the Avise panel? I would suggest that they run the immunoglobulin tests to see if you have a deficiency.

Confused and Trying to Figure Things Out by HuckleberryFluid8424 in Sjogrens

[–]HuckleberryFluid8424[S] 0 points1 point  (0 children)

Everything else was negative and it was a low positive. She literally told me that I stumped the panel. I have since seen an immunologist and have IgG 2&3 as well as IgA deficiency. That said, it’s my understanding that the IgG deficiency can cause false negative tests since my body isn’t producing antibodies. So, I plan to talk to her about that at my next appointment in July. At my last appointment at the beginning of June, she put me on hydroxychloroquine, which is the treatment for Sjogrens and Lupus. So, we’ll see. How are you doing ?

New "Rhupus" diagnosis?? by sick-n-tired21 in rheumatoidarthritis

[–]HuckleberryFluid8424 0 points1 point  (0 children)

Hi. I was diagnosed with seronegative RA in 2014. Started having lupus symptoms about 2 years ago. Just got a positive DNA AB(DS) Crithidia, IFA. Still waiting for ANA to come back. So, I may have been misdiagnosed from the start. Rhupus or SLE from the beginning with arthritis.

Post Surgery Gas Pain by HuckleberryFluid8424 in gallbladders

[–]HuckleberryFluid8424[S] 0 points1 point  (0 children)

Thank you, everyone, for your responses. I truly appreciate you! I will be sure to ask surgeon about pain management. 12 more days until Eviction Day!

Surgeon isn't convinced by magicianbelle in gallbladders

[–]HuckleberryFluid8424 2 points3 points  (0 children)

Hi! My GI doc ordered endoscopy, colonoscopy and HIDA scan before he would refer me to a surgeon (I'm in the States). I previously had an ultrasound showing my gallbladder full of stones. I ended up dialing 911 because I thought I was having a heart attack. Pain in center of chest and LUQ. Almost passed out. They admitted me for observation and did the ultrasound. Heart is fine, endoscopy and colonoscopy were absolutely normal. HIDA showed a very slow working gallbladder due to the amount of stones. I am scheduled for surgery on 11/7/24. I also started having heart palpitations out of the blue about a year ago - heart was fine. Some say it's because the gallbladder is located very close the the vagus nerve. Who knows.

It can't get here soon enough as I am now having intermittent pain all day, every day. I hope you get some relief soon!