[Cheryl59]

Re: Autoimmune multiple myeloma?

by Cheryl59 on Thu Sep 28, 2017 3:09 pm

Hi Jane,

I am still new to this site. I recently had blood test immunofixation ELP which came back abnormal. Pathology report: Paraprotein IgG kappa.

I have had thyroid problems for years. My brain says let's have fun and enjoy life, I wanted to do it, my body poopered out. I forced myself to go on vacations, outings, etc. Wondering, why don't I feel well, where is my energy. Once in a great while, I would get it back. I noticed I would feel my energy returning after being treated with antibiotics and steroids for a severe sinus or upper respiratory infection. Within 2 weeks, gone again.

I have had blood work that shows either: hypothyroid or hyperthyroid along with symptoms, several nodules, TSH gradually going lower, in 2016 below normal, along with elevated TPO antibodies. 2016 2x nodules tested 6 months apart, negative for cancer. My symptoms are real, but doctors have only tested thyroid antibodies 2x in 10 years.

I recently saw a movement neurologist at Stanford for head tremors, cognitive and memory problems. I had blood work, neurological and cognitive testing done. Outcome - thyroid related. He believes based on my health and symptoms, and, previous tests performed over the years that I may have one of these that I need to be followed up for:

Anti-TPO syndrome or SREAT (Hashimoto’s encephalopathy)

My new primary care physician believes that whatever is going on with my neurological issues is related to thyroid and my abnormal paraprotein. I have my first hematology-oncology appoint­ment tomorrow (September 29. 2017).

[Jellitot]

Re: Autoimmune multiple myeloma?

by Jellitot on Sun Oct 01, 2017 8:03 am

Hi Cheryl,

How did you get on with your haema­tology­/ oncology appoint­ment?

I agree, people don’t realise how debilitating thyroid problems can be. Another symptom of this auto­immune myeloma is unnatural tiredness that I have experienced for years. Your thyroid problems certainly sound auto­immune.

Jane

[Cheryl59]

Re: Autoimmune multiple myeloma?

by Cheryl59 on Fri Oct 06, 2017 4:00 pm

Hi Jane,

In regards to your question,'had I seen the oncologist/hematologist yet', Yes, I have. I was seen on September 29th. More blood work completed, skeletal scan, and upcoming bone marrow biopsy next week.. The doctor seemed disinterested in my thyroid issue (in which my new primary care had redirected me to the oncologist / hematologist). In the meantime, I am waiting to be seen by someone at Stanford Endocrinology. I will keep keep you up to date as I learn anything.

Take care,
Cheryl