MS/Fibromyelia/Refractory Anemia/Early MDS (Myelod
 

Hello,

I'm Tiffaney and have been dx with MS for 10 yrs/Fibromyelia....I know, I didn't spell that right...but, its ok...one of those moments...

I would like to know, a little information...

I'm on Tysarbi...have been for over 7 yrs....Oh gosh, over the last couple of months, I've been going through alot...being anemia, and so, so tired...more so, than ever..

I had a bone marrow biopsy, done, last month, because, the oncologist, stated, my blood levels were up and down, red blood cells and to see actually, what's going on...so, he told me, I didn't have cancer, leukemia, or lupus....I was dx with Refractory Anemia/Early MDS (Myelodysplastic Syndrome) on Wednesday.

I've been researching and all, since Wednesday....I'm just curious..does anyone else have this and does anyone live in Virginia, in which, I would like to change neurologist, like ASAP and a dr, who specializes in MDS.

If anyone, watch ABC in the morning...anchor Robin Roberts, has this disease as well, short for MDS.

I'm sorry, for venting and all....


Thanks,

Tiffaney

P.S. I've been off Tysarbi for 2 months..

Tiffaney,

Since you are in the Virginia area,I would get a second opinion at Johns Hopkins or the NIH in Bethesda. Your meds can cause bone marrow problems as well nutritional insufficiencies.

Make sure your B12 is in the mid to high range, and have them check your iron, folate, copper, vitamin D3, b6 and zinc. All of these are needed to make blood. Make sure they checked these and get the results

My husband was treated at Hopkins in 2002 for Severe Aplastic Anemia. It was the high dose cytoxan clinical trial which has also been used for some forms of MS. He has a local hematologist also.

You need to start tracking your blood tests and BMB's. So get copies of all your test. You want to see first hand what's going on.

You should also look at this site. There's a lot of good info on blood and bone marrow disorders. http://www.marrowforums.org/index.html

AA/MDS Foundation is helpful also.
http://www.aamds.org/

Both of these are a good place to start getting familiar with blood disorders.

My mother had MDS. You need an oncologist asap. MDS is a cancer, its cancer of the blood. Early onset is best. This can be cured, but you need the right doctor. Second opinions are always a great idea. We did 3 opinions for my mother. If I remember correctly, the only cure is a bone marrow transplant, but it is age sensitive. She was 64 at the time, and considered to old for the procedure. Good luck to you and God speed.

I'm not sure (hard to believe, since I've read a lot) whether MDS is related to Myeloproliferative, which I have in addition to an MS dx and Porphyria. I have had Polycythemia Vera ( a myeloproliferative disorder) for about 7 years. I have phlebotomies for reducing red cells, and had p32 (Radioactive Phosphorus) at Mayo Scottsdale in March, which reduced platelets to almost normal.
I have been to Hopkins as well, years ago, and they certainly are a good place to go, as Marlene suggests. But they were not "up" on the use of p32--I've called my doctor there, and they do not use it.
So I would also recommend Mayo Clinic for your disease. You are closer to Mayo Rochester than to Mayo Scottsdale.
When I first got VP (my myeloproliferative disease) I was told it was not cancer, but since then the World Health Org. reclassified it as cancer. the cells are not malignant, but proliferate too much. As I say, do not know if that is related to what you have.
And as KittyLady said, "God speed."

Mariel,

My family doctor recommend me to see oncologist drs...because, every month, I was catching colds, sinus infections, etc.

The oncologist is really nice and he wasn't detailed, because on Wednesday, I was so blown away...I told him to write it down...

I will get a second opinion, definitely and check out the names you have given me...

Thank you for the valuable information...

I will keep you posted...

Have a great weekend..

Tiffaney

KittyLady...

I was referred to an oncologist...he was very puzzled, because my levels were up and down...They even gave me a vitamin infusion and Vitamin D 50,000 units....

You are definitely right about....catching everything early...I'm on a strong mission for a 2nd opinion.. I'm also, sorry to hear about you mother...

Thank you, for the information, and I will definitely keep you posted..

Have an awesome weekend..

Tiffaney

Marlene,

I thank you so much for this information.

A good friend of mine, also, mention John Hopkins.....

Again...greatly appreciated...so new to me...

I keep positive spirits as always....I'm just on a mission to do, what I have to do...

Thanks, and I will keep you posted...

Have a nice weekend...

Tiffaney

The Tysarbi suppresses the immune system. All monoclonal antibody drugs do that. So risk of infection is greater. Monoclonal antibodies are also used in the treatment in some types of MDS and SAA with varied success.

It's important to get a good diagnosis and proper classification of your MDS. Since you are now off the Ty, you may see it reverse. But you also need to make sure your B12, along with the other nutrients, is optimal. There are studies proving low normal b12 and low copper can be the cause of MDS and if corrected, can reverse it.

MDS has many classifications. Some are not treated because they are low-risk and not causing problems. They use different treatments depending on the type. So an accurate diagnosis is key in treating blood disorders.

I suggest UNC-Chap. Hill system or if you want somewhere in VA going to the Tidewater area (Sentara Norfolk or Princess Anne hospitals or Chesapeake Reg Med Ctr Hosp), which have an enxcellent reputations for all forms of cancer and precancers. I do not reccomend MCV system in Richmond as I just dont like the way that treat patients as "billing accounts" (my opinion)

Johns Hopkins and NIH are also excellent suggestions. :hug:

Good luck and in my prayers!

*love my neuro (in Chesapeake) and hated my last one (inNorfolk). I mention this only in case you need to have someone handle the MS stuff while you get the blood issue dealt with. am happy to give you his name and number.

Hi Jane
 

How are you? I'm thinking about John Hopkins hospital.....I'm very much interested in your neurologist in Chesapeake...What's his name/number and how long have you been going there?

Thank you, for this information..I'll keep you posted..

Have a nice day and stay cool...

Hugs

Tiffaney :)