Multiple Sclerosis (MS) Support Group
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Hello everyone.
I am an active duty Naval Officer stationed in California who was recently (last six months) told that I have "probable MS". I have seven small lesions on my brain in the right spots, two on my spine and oligoclonal bands in my CSF. I had several months of no symptoms after a small exacerbation in February, but recently have been having more severe difficulties, specifically with regard to vision.
I have had occular migraines every other day for nearly two weeks as well as odd visual difficulties that range from blurriness to blind spots separate from the occular migraine occurance.
My question for everyone is what your visual symptoms are day to day or during attacks. It is quite disconcerting and would love to hear how everyone deals with it.
I am not on any sort of medication since I was scheduled for a bone marrow transplant for Chronic Eosinophilic Leukemia. That transplant has been delayed while we try one more targeted drug. The lack of medication for MS is transplant protocol as well as my neurologist saying that the transplant, if successful, would likely cure my MS as well. This particular exacerbation started just a few days after I started on a bridging chemotherapy drug called hydroxyurea.
Any advice would be greatly appreciated.
V.r
John
I am an active duty Naval Officer stationed in California who was recently (last six months) told that I have "probable MS". I have seven small lesions on my brain in the right spots, two on my spine and oligoclonal bands in my CSF. I had several months of no symptoms after a small exacerbation in February, but recently have been having more severe difficulties, specifically with regard to vision.
I have had occular migraines every other day for nearly two weeks as well as odd visual difficulties that range from blurriness to blind spots separate from the occular migraine occurance.
My question for everyone is what your visual symptoms are day to day or during attacks. It is quite disconcerting and would love to hear how everyone deals with it.
I am not on any sort of medication since I was scheduled for a bone marrow transplant for Chronic Eosinophilic Leukemia. That transplant has been delayed while we try one more targeted drug. The lack of medication for MS is transplant protocol as well as my neurologist saying that the transplant, if successful, would likely cure my MS as well. This particular exacerbation started just a few days after I started on a bridging chemotherapy drug called hydroxyurea.
Any advice would be greatly appreciated.
V.r
John
I have NEVER heard a Dr say that something will CURE MS. Unfortunately there is no cure for MS, only medications that can slow down the disability process.
I read your comment, on another thread, that you are on the Wahls Diet. That diet has shone great results for many.
Best of luck in your process.
Chrissy
Thank you for the input on the visual portion of the disease. Do you ever have groups of migraines at all that accompany the neuritis?
Regarding the cure...see below. Never give up! I would not consider a bone marrow transplant if it wasn't for the leukemia.
My leukemia requires a allogenic transplant. The study linked below is a study with a autologous transplant. There is hope and clinical proof that a cure could exist with transplant.
That being said, the doctor looked me in the eye and told me I had a 1 in 5 chance of dying due to the transplant. The risk is high, but the reward could be a cure.
http://www.healthline.com/health-news/ms-patients-who-received-stem-cell-transplants-still-in-remission-010715#4
http://www.ncbi.nlm.nih.gov/pubmed/18541311
In regarded to never finding a cure, sorry I was a bit harsh/negative. The last time I saw my Neurologist, 2 months ago, we talked about stem cell transplants. I was warned to not go out of the country for one. She is aware of patients that have had outstanding results, but knows also about many that have have had horrific results.
I don't really know about much about bone marrow transplants. I will never give up hope. I'm researching remylination studies for me, but I hope there is a cure in the future incase, heaven forbid, I passed this on to my kids.
Thoughts & prayers that your transplant will be successful.
No need to apologize. You weren't harsh at all. Reality is never something that I will argue with. I just wanted to let you know that for some people there has been a cure.
Two more migraines today...hardly any pain with them. Also weird visual stuff. Almost as if the imagine is slightly shifting as I look at it from time to time.
Vr.
John
So far as a cure for MS, I believe we can change the outcome based on clinical trials and research not only done by Terry Wahls, MD but also many researchers that have come before her. There is evidence that so much can be done and this is why I keep on the exercise and diet.
I don't take any MS "modifying" drug as I don't believe in them for me. This helps me to feel better from day to day so I think that's the better alternative right now.
Glad you posted the transplant info so we could see what this is about. All the best to you.
I have had arcs of light on the outside edge of each eye, separate occasions. Neuro-ophthalmologist said my optic nerve looked fine and that my eyes were healthy.
I still occasionally get double vision, and sometimes my vision is blurry. That happens more often when I am tired or have used my eyes excessively. Alas, 20 minutes of needlework and I'm done for the day. Just one more thing that MS has taken from me.