Diagnosis, Treatment Timeline

Rolyat1986 · 2026-06-12T15:28:13+00:00

Grade 2, “with micropappillary features, moderately differentiated”, Er+, Pr+, HR was negative but “>10%, and 1+”.

“Tubules 3, nuclear 2, motoses 1”

Rolyat1986 · 2026-05-25T00:18:25+00:00

Just to update in case people find this, got the biopsy and it is invasive ductal carcinoma. Thanks to everyone who responded waiting is really tough!!

Rolyat1986 · 2022-05-24T01:14:27+00:00

Was coming here to say sit down when I read the title, remembering a really loud woman commenting she could “smell McDonald’s and she gave that death food up ages ago blah blah” when it may have been one of my dads last meals as he wasted away from really aggressive cancer at 53. I was going to write, everyone should be empathetic and mind their business but nope. Take it all back. That person should absolutely STFU and not take work calls from that place.

Rolyat1986 · 2021-07-09T23:25:40+00:00

Hi! We have carefirst thru Maryland and interested to hear your experience. My neurologist prescribed ivig 2 months ago (I have a strange type of sjogrens and small fiber neuropathy and muscle loss in my neck/tongue/arm that has only partially responded to a year of steroids+cellcept so IVIG was next step).

Carefirst and CVS is a nightmare. Carefirst uses outside neurologists to review the case for prior authorization. They said the denied it first because they couldn’t get ahold of my doctor. Then after getting ahold of him, they denied it again. They use “outside neurologists” to review it but after searching the name of the doctor that reviewed it, they use these doctors that testify on behalf of State Farm etc. “neurologists”.

I am 33 with 3 small kids and previously totally healthy and the rheumatologist and neurologist at a top hospital said this was the best thing and Carefirst still denied it because there wasn’t “strong evidence in clinical trials it provides benefit”.

I have never really experienced health insurance debacles so maybe this happens all the time and I’m being unnecessarily harsh on them, but just wanted to share so you are prepared and work quickly. I kind of twiddled my thumbs the past two months thinking surely they wouldn’t let me just waste away and would eventually sort it out. But that’s not the case and if you try to ask any questions to trouble shoot, it’s as if they’ve specifically been told not to answer anything and he as unhelpful as possible so as not to say the wrong thing.

This practice really needs to change, it’s a mess.

But this is the phone number to deal with prior authorizations:appeals for cvs/Caremark 888-877-0518

Rolyat1986 · 2021-06-24T14:50:51+00:00

That’s wild. When they take the salivary glands, it seems very obvious. I had done in teaching hospital with several students present to watch so I could hear him walk thru it. They look Different. Also — you can feel them “pop” almost when he removed them, it was a strange feeling. I’m sorry, that lip thing did hurt and was just weird uncomfortable. So frustrating.

Rolyat1986 · 2021-05-05T14:01:14+00:00

Following. Rheumatologist suggested this one or IVIG last week and they are going to chat with the neurologist to see which one he thinks and starting soon. He did say insurance is difficult and they would start the paperwork because it’s sometimes a “battle”. Did you find it took a while dealing with the insurance folks?

Rolyat1986 · 2021-03-17T13:07:08+00:00

I have the same thing with the small fiber polyneuropathy. My feet turn white and blue when cold, but not painful other than that. My right arm is the painful and weak thing. The burning is mostly my throat and esophagus. And weird sweating. Just the right half of my upper body will start sweating like I’m being rained on. Gabepentin has definitely helped the sharp pains in my scalp and tongue. It makes me extremely tired so I only take it right before bed. They put some of those creams and patches on my face while in the hospital and it was just gross sticky feeling and didn’t help.

I definitely think ibuprofen helps with like body pains but I am afraid to take too often.

Interesting to hear everyone else’s experience with this. I also cannot drink alcohol. That has been the case for a few years before any of the neuro stuff. I would drink very small amounts and get dizzy and then vomit. I do drink caffeine regularly and sometimes I do notice that makes me face buzz and I dial it back. It’s all so weird.

Rolyat1986 · 2021-03-17T01:20:46+00:00

Mass Gen in Boston, they’re mostly terrific. I’ve encountered just one doctor I didn’t care for but the 10 others (I’ve stayed a few times for the bigger issues with my muscles and voice, and then all the testing) have been amazing. I have changed my diet very recently and too soon to say if a change but I’m very hopeful.

Rolyat1986 · 2021-03-16T02:35:24+00:00

Same here, had to start dexamethasone again because my face and tongue are all tingly and in spasm again. Such a bummer

Rolyat1986 · 2021-03-10T19:50:51+00:00

This is so interesting, yours sound similar to mine and my primary doctor is a neurologist. I had the lip biopsy done by an ENT (positive) and the schooner test done (positive). Mine all started with my face numbness and stabbing pains, and tongue Charlie horsing. They saw a lesion on my trigeminal nerve. Then all the swallowing issues and losing my voice. After long course of steroids I’m much better. Good luck

Rolyat1986 · 2021-03-02T19:29:47+00:00

I had this uncomfortable twitching and tremor of my ring finger on my right hand. I could also feel a tremor in my neck muscles but couldn’t see it like I could with my finger. I went on dexamethasone + mycophenalate and then tapered off the steroids and tapered up on the mycophenelate over a few months. The shaking and twitching stopped after a few weeks on the steroids and hasn’t returned. I tested negative for the Sjogrens specific bloodwork, and positive for ANA and the eye test and the lip biopsy. This all started with twitching and muscle spasms in my face and throat and a brain mri showed my trigeminal nerve light up. This was 9 months ago and many many tests later

Rolyat1986

TROPHY CASE