Advice for new dx MDS

[Jen2012]

Hello,
I have been diagnosed MDS stage 3A intermediate with trisomy +8. My doc has prescribed folic acid 1 mg a day, I am currently taking 5mg a day because I have episodes like seizures. Is this common? My primary doc thinks it is 2 different things.

[milliken2]

Jen;
I am not a physician for sure - but am an RN,BSN. It is my husband who has MDS. To my knowledge and after a lot of research for him - I have not run into any studies where it shows the two are correlated.
Seizures - partial or complex - are a neurological problem - the synapses in the brain misfire - and don't make the correct connection - and a seizure results.
MDS, on the other hand, is a hematologic/oncologic problem, and there are several types of MDS. Most of the people here are very helpful, and a lot more educated than I since most of them have been dealing with it for a while longer than my husband and me.
I would tend to agree with your primary doc and say they are two different but serious things. Good Luck to you.
Beth

[DanL]

Jen,

I don't have any medical training, but it does sound like there are most likely two separate issues that you are working with. Having read just about every article and journal I can get my hand on, Ihave not yet read anything about seizures being associated with MDS. Folic acid deficiency can reduce blood counts and cause cell dysplasia that mimics MDS. Unfortunately, the Trisomy 8 is associated with hematological malignancy like MDS, PMF, and AML. (sorry for the acronym soup).

The members of this site have been fantastic in helping me understand MDS and the impact on my life and the people around me. The knowledge and compassion shared here is great.

[Jen2012]

Thank you guys for the info, this site is very informative. Beth, I am also an RN but am completely lost on these symptoms. Good luck with your husband it is just all new and confusing. @ Dan, I am interested in your treatment and if I need a second opinion?

[Birgitta-A]

Hi Jen,
As several members have written MDS patients don't have episodes like seizures more often than other persons.

Then there is a problem with folic acid - the vitamin is very important for the bone marrow and we need it but the drug is DNA methylating. It means that folic acid can put extra methyl groups to DNA. These methyl groups can increase the risk of cancer.

Vidaza and Dacogen are so called hypometylating drugs - they work by decreasing the mythyl groups.

Perhaps you should take 1 mg of folic acid/day (I do that) and not 5 mg/day.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone.

[Chirley]

I am homozygous for the MTHFR gene (which I only found out by donating my blood to a research study many years ago) and was told to take 5mgs of Folic Acid every day to reduce my homocysteine level.

I did this for years. When I started having bone marrow problems my haematologist recommended that I keep taking it. However, when I saw the Prof of Metabolic Medicine he told me to stop straight away because increased doses have been shown to cause cancer.

The two doctors disagreed with each other and the decision was left to me. I stopped taking it even though the neurologist said that he thought it might improve my spinal cord demyelination.

I no longer take any supplements or drugs and depend solely on a balanced healthy diet.

Regards

Chirley

[SarahL]

If having systemic lupus was not enough = with abnormal labs since February 2011 - and then cbc's were extremely low, and I had trouble breathing, which I attributed to my COPD (my Mom had that), this new illness was diagnosed by a bone marrow aspiration and biopsy. They say I have a "mild MDS." I had a blood transfusion two weeks ago - my hemo was 7.9 and hematocrit 23. Yesterday my hemo was 10.6 and hematocrit 31. So far the red blood cells they gave me are working, I guess. My onc told me I have slight kidney failure which is irreversible, and that Procrit shots will help my condition. I am severely fatigued, headaches, eyes hurt, legs feel like two tons of wood, numb toes, and I can't seem to keep weight on. It was scary until results came in. So far, they call it "mild." If this is mild - I can surely empathize with anyone who does not have "mild." I am 69 years old, active, play tennis 4 times a week, and struggle to do it all. Any input from anyone receiving Procrit injections will be most appreciated! Thank you!