An update and learned a lot at my specialist appointment yesterday

[summerluvr]

For those who are not familiar with my story, I have multiple myeloma, not MS, but for two years had progressive MS type symptoms.

So we met the Myeloma specialist yesterday to talk about my stem cell transplant.

She was extremely knowledgeable and spent an hour talking with us, and really explained Myeloma, and my treatment.

She said I have had Myeloma for at least 2 years, and all my symptoms including my foggy vision, numb hands, Trigeminal Nerve issues, and bladder issues were from it.  (just to let you know I have had my eyes checked about 10 times, and saw at least 5 ophthalmologists who could not explain why my eyesight was foggy).

I have one of the rarer issues from Myeloma which is thick blood, or hyperviscosity.  Because the blood is thick, it does not make it to all the small veins such as those that supply the eyes.  And also leads to things Raynauds and other issues like nerve issues. With treatment this should improve!

I am doing ok, but find it hard to think about my future as so much is not known about curing Myeloma and the stem cell transplant would likely get my 5 years remission

Stay positive

Alyssa

[summerluvr]

thanks everyone for the warm thoughts!

[summerluvr]

No the doctor didn't mention that.  I should ask.  This appointment was with the top Doctor in Canada for Myeloma who coordinates stem cell transplants, so she was able to confidently say my symptoms were Myeloma (the foggy vision) where as my other doctor didn't think the vision was related, and she hadn't talked to me about the hyperviscositywhich is not that common only 5% of people with MM have it.

We talked about what is Myeloma, what plasma is supposed to do and what goes wrong.  The doctor uses the analogy of a light switch turning off and on but in my case it go left on so the plasma keeps making antibodies but they are not for a specific illness. Many patients  presentation is bone pain, fractures which I don't really have it, but how my presentation is not that uncommon with various general symptoms.

We talked about some of the other issues, including anemia and infections.

[Quixotic1]

Thank you so much for the update.  I have been worrying about you!  But, I see that you are in good hands.  We are staying-tuned.

Did they explain that the MM was causing a paraneoplastic syndrone which had attacked your nervous system?

{{{HUGS}}}

Mama Quix

[PastorDan]

Best wishes.

[HVAC]

Alyssa,

  I will be thinking of you. My husband and I have participated in the MM charity ride for Duke Hospital for the past two years. You take care of yourself.

Alex

[essdipity]

Sending good wishes to you for successful treatment and quick remission. Please keep us posted at each step.

ess

[supermum_ms]

Thanks for giving an update, i'm pleased you've got someone who knows their stuff and you sound confident in the direction your headed with their advice.

Stay true and head for remission!

Cheers.......JJ

[rendean]

Thank you for the update. I'm glad you have a knowledgeable and caring oncologists that seems to be a good fit for you.

Please keep us updated here. We still care about you and what curve-balls get thrown your way.

As for thinking about the future, just think about one day at a time. That strategy has worked for me for decades through family illnesses and crises. One day at  at time....

Hugs!!

Ren

[DawnYM]

I have thought about you often!!! sending prayers to you always!!!

[Lulu54]

Alyssa,

Thanks for the update.  We have been wondering about your treatment plan.  It sounds like you are comfortable with this oncologist and are in good hands.

Please stay with us here - it may not be MS but we all have an interest in your health.

hugs to you,
Lulu