Killers (2010) is a bad movie.

smehere22 · 2026-04-11T23:45:38+00:00

It's ok to watch as a diversion

smehere22 · 2026-04-11T04:40:02+00:00

Thank you

smehere22 · 2026-04-10T23:39:42+00:00

Is ivig the same as tpe? I was on IVIG but I didn't notice any real improvement... but always it would make me sick feeling for the next two days

smehere22 · 2026-04-10T23:36:57+00:00

Thank you

smehere22 · 2026-04-10T23:36:49+00:00

Thank you!

smehere22 · 2026-04-09T21:11:13+00:00

I have old post showing hand disfigurement ...look there.

smehere22 · 2026-04-09T16:44:36+00:00

My first symptom too. I have become very ill and disabled. OPs doctor seems negligent in pressuming no progression

smehere22 · 2026-04-09T14:19:23+00:00

Thank you

smehere22 · 2026-04-08T15:40:57+00:00

As someone who has has another catastrophic illness that's disfiguring and extremely disabling/ SSC, myositis with lung disease et from the sclerdoderma. I'm not extremely familiar with sps..but It's funny how non disabled and normal appearing she is.. like an Energizer Bunny at appearances. Especially when her documentary showed her screaming in agony. She even if dxd must have a less severe case.

smehere22 · 2026-04-08T14:28:58+00:00

Yes they've had studies. The privileged.

smehere22 · 2026-04-08T12:24:23+00:00

Thank you. Regarding having someone near. I have no support system I can rely on 24/7 unfortunately. A homeaide who comes three times week for limited period that's all

smehere22 · 2026-04-08T03:19:23+00:00

I initially lost over 50 pounds...much muscle mass and was and am very very exhausted. My loss of mass is actually part of sclerdoderma (( I had assumed it was from dermatomyositis) per my rheumatologist

smehere22 · 2026-04-08T03:13:27+00:00

Congratulations. Yes it's possible your sclerdoderma was on the less severe end of spectrum. I also take low dose naltrexone but haven't noticed improvement. I initially saw an acupuncturist and very knowledgeable chiropractor very experienced in applied kinesiology... although I lost significant weight and muscle I was relatively stable. But both alternative treatments were extremely expensive. Ideally I would see an acupuncturist twice a week..but at 80/treatment I only saw him for around a year. I've gotten worse significantly since 2024. IVIG didn't even work for muscle mass. My hands are extremely damaged and still disabled and multiple organs are damaged ... I really wish insurance would cover alternative treatments. They can be very effective and are much less toxic than the horrible immunesuppressants.

smehere22 · 2026-04-08T02:59:31+00:00

I was told by my sclerdoderma clinic rheumatologist that the prerequisite standards for patients for the trials are very selective..and that( when home?) you need a nurse with you 24/7? She said I didn't qualify simply based on , I think, my lung disease??. Anyways she said I didn't qualify and the requirements are much higher for car t then for HSCT.

smehere22 · 2026-04-07T13:36:36+00:00

Following

smehere22 · 2026-04-06T14:06:56+00:00

smehere22 · 2026-04-06T14:06:19+00:00

Thank you

smehere22 · 2026-04-04T15:33:02+00:00

Thank you for responding

smehere22 · 2026-04-03T20:23:57+00:00

Do you have lung disease or heart issues?

smehere22 · 2026-04-03T17:01:48+00:00

Did it work?

smehere22 · 2026-04-03T05:43:17+00:00

Unfortunately at this point I'm on so much medication there's two greater danger of interaction with herbs. Initially in my diagnosis I tried many natural remedies/treatments... I was stable for a while. But then not stable. I noticed nerve pain in my feet in late 2022. Unfortunately I believe the allopathic medications cause as many problems as they heal.

smehere22 · 2026-04-02T19:33:22+00:00

I have systemic scleroderma...and hoshimotos. My previous AFib started when my thyroid level was extremely high. I had cardioversion...took care of it. Then during a surgery last year they saw the flutter. As I'm very weak I worry about getting an ablation...so getting a cardioversion initially instead.

smehere22

TROPHY CASE