Susann

I have 11 autoimmune diseases which are all severe and have never been in remission. I also have a rare inherited immune deficiency called CVID -Common Variable Immune deficiency.

I am also on three immune suppressants. So my immune system is shot. I had severe reactions to the second and third vaccines so instead of getting another booster one…[Read more]

I have 11 autoimmune diseases and a primary immune deficiency

Nothing has helped most of my diseases including Rituxan for 5 years before it was studied in MG or Lupus

I am also seronegative for MG.

I have never had any of my autoimmune diseases controlled or in remission

I had it March 28 bc I have 11 autoimmune diseases am on three immune suppressants and I have an inherited primary immune deficiency called CVID. I hurt and had increased arm weakness with the first Covid shot but with the second and third shots I had severe flu like symptoms and fever to 104.

The evushield is probably the only med I had…[Read more]

Avoid magnesium. As a doctor I can tell you there is only a paragraph in textbooks about MG. Most non- neurologists don’t know all the meds that can worsen MG. You can print off a list and carry it around with you. When I am hospitalized and my magnesium gets low I speak to the doctor to find out my magnesium level. My neurologist says it is b…[Read more]

As a doctor who also has 11 autoimmune diseases there is no reason it should take a year to wean off steroids. I get IVIg every three weeks and take high dose mestinon I have failed every other treatment. You can actually be on 14 days if 40mg of prednisone without having to wean it. I don’t know what dose you are placed on for flares but you m…[Read more]

I am seronegative which my neurologist said is the hardest to treat. I am a doctor and did research on my own it is the most severe type and hard to treat I’m on high dose mestinon and IVIG for years. I have failed all immune suppressants including four years of Rituxan off label from 2015-2019. I  stage IVb. I’m on oxygen and have a non inva…[Read more]