Karina's story, still looking for answers

[Karina C]

I was diagnosed with multiple sclerosis in 1998 and thought the disorder would be my challenge in life. This blood disorder is challenging on a whole new level. In January 2014 I became ill with a virus that I couldn't seem to shake. I started having significant muscle weakness, more difficulty walking and increased muscle pain. I thought this was an MS exacerbation, so after consulting with my neurologist I did a prednisone tapper. I felt a bit better while on the meds, however as soon as I finished, I began having shortness of breath, rapid heart beat and felt like I couldn't breath. I tried to push through, as most things are a struggle with MS and I figured I'd just have to deal. Things kept getting worse, until the point that I had to lay down in bed to allow my heart to calm down between brushing my teeth and my hair. I went to my GP who found my HgB to be 5.9. I was sent for a 2 units of PRBCs. A few days later my HgB was up to 7.6. My doc sent me for another 2 units the next week. When I went to his office 3 days later my HgB was down to 7.4. And so began the referral to hematology. Since February 21st I've been to the hematologist several times a week. I've had every blood test that could be done as well as a bone marrow biopsy. Things have not improved. I have been transfusion dependent since the very beginning, receiving 2 units every 10-14 days with no definitive diagnosis. My bone marrow biopsy showed hypercellularity in March, however I've shown no recovery. I was referred last week to a specialist at Northwestern University who will be repeating my BMB next week. My reticulocyte count has dropped to .2% and based on the other tests she believes the new BMB will indicate AA or MDS. In the mean time, I have been taken off of my MS meds, as the Tecfidera that I was on can cause decreased white blood counts (which have fluctuated between 3.4-5.9 over the past 5 months). I'm so nervous about a new diagnosis, and I'm not sure how to manage both (a lot of MS meds are immunosuppressants, however they don't react well in the presence of other immunosuppressants, which my newest hematologist is talking about). I'm looking forward to a definitive answer on what has been so destructive to my bone marrow as well as some idea of how to live as well as possible, but I am so very nervous reading about the likely treatments and how they will affect my MS. I'm so happy to have found this site, and look forward to reading about other folks journeys as well as having other people who have been where I am. All the best to all.

[Chirley]

Hi Karina..I'm sorry you've had to find this site but on the other hand, just this morning I was talking to myself and having a small moan about how I wish I knew someone else with a Neuro disease and bone marrow problems and voila....here you are!

I don't have any answers for you and I just want to lend a shoulder to lean on while you are waiting for answers. My problems occurred in the opposite order. Bone marrow failure, then Myelodysplasia, then, neuro degeneration. Now I have both together.

Please keep us informed on how you're going and I wish you all the best.

[Karina C]

Hi Chirley,

Thanks for your reply. I'm glad to be in touch with someone struggling with the same issues (not that I wish it for either of us)! Hopefully I'll find some answers soon. If you don't mind me asking, what treatments have you been on? Thanks again,

Karina

[Chirley]

Where to start, it's a long story over many years.

I've had iron injections, iron infusions, then progressed to occasional blood transfusions which increased over the years to blood transfusions every two weeks. I've had infections from low white cell counts. That was when I was started on chemo (Vidaza) but that didn't work and I was being worked up for a bone marrow transplant when I started having Neuro problems and I was found to have dead nerve cells in my spinal fluid. Then I was diagnosed with copper deficiency myelopathy and bone marrow failure. I currently have 5 days of intravenous copper sulphate every 6 weeks as an admitted patient. This keeps my bone marrow functioning well (but not normally) and is slowing (but not stopping) my Neuro deterioration.

I am disabled, can't work, need a motorised wheelchair for mobility outside the house and a walker inside the house. I suffer bouts of generalised dystonia, chronic spasticity, neuralgia, intermittent loss of vision, ataxia, loss of balance and periodic episodes of being non verbal.

It's not much fun!

Hopefully your MS hasn't caused this much trouble.

[Cheryl C]

Hi Karina - are you aware that Vitamin D3 supplementation is very important for people with MS and also for bone marrow diseases?

All the very best with your next BMB!

[sbk007]

2 different Hematologists and 1 General practitioner told me that Vitamin D
is not a factor in MDS. I don't know what to believe about vitamin D but I take it for good measure.