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Hi there.I am 30 years old and i suffer from hereditary spherocytosis .Last 3.5 years i had my first ms symptoms(diplopia,numbness)Is anybody out there dealing with the same situation ? I am searching for ccsvi therapy,looks promising, cause is the same theory with any type of anemia . Low hemoglobin low hematocrit (anemia),bad flow ,low oxygen in the tissues(ccsvi).
Does anyone have the experience to live with ms and splenectomy for any reason?

Aristarxos wrote:Hi there.I am 30 years old and i suffer from hereditary spherocytosis .Last 3.5 years i had my first ms symptoms(diplopia,numbness)Is anybody out there dealing with the same situation ? I am searching for ccsvi therapy,looks promising, cause is the same theory with any type of anemia . Low hemoglobin low hematocrit (anemia),bad flow ,low oxygen in the tissues(ccsvi).
Does anyone have the experience to live with ms and splenectomy for any reason?

Hi Aristarxos,

An enlarged spleen (splenomegaly) is a symptom of a possible vitamin B12 deficiency. (Vision disturbances, like diplopia, and numbness and anemia are also symptoms of a possible B12 deficiency.)

Nitrous oxide exposure (often used in surgery) can inactivate B12 throughout the body.

Any person, at any age, can develop a B12 deficiency. I am curious to know if you were screened for a possible B12 deficiency at any time before or after your surgery.

I have MS, but have not had a splenectomy; but since you posted in the general discussion, I feel at liberty to comment.

Aristarxos wrote:Hi there.I am 30 years old and i suffer from hereditary spherocytosis .Last 3.5 years i had my first ms symptoms(diplopia,numbness)Is anybody out there dealing with the same situation ? I am searching for ccsvi therapy,looks promising, cause is the same theory with any type of anemia . Low hemoglobin low hematocrit (anemia),bad flow ,low oxygen in the tissues(ccsvi).
Does anyone have the experience to live with ms and splenectomy for any reason?

Hi there.

I had an emergency splenectomy in '96. I was unceremoniously sent home to recover. After one week, my mother took me to our family doctor and then he took one look at me and turned me around to go to the emergency room. I was there for three weeks with various complications including a blood clot, tear in the liver, and pancreatitis.

Fast forward to to 2011 when I was quickly diagnosed for MS after I drove myself to the hospital with a funny tingling and numbness in my right leg. It progressed to include various other symptoms as well but, as of yet, I do not rely on a cane or wheelchair.

I did ask my neurologist (by all accounts the premier MS doctor in central Florida) if there was a connection between my lack of spleen and MS. He shrugged it off. He guided me in a choice of meds and has performed several MRIs only to confirm that there are no significant changes.

I am thankful that there have been no changes but have come to question the need for the test when there are no outward changes. I mean, really? Even if there were changes to the lesions, what would he be able to really do? Put me on different meds that may further damage my liver? I am now exploring the notion that MS really starts in the gut - further more if it starts with a candida infection.

I don't mean anything bad, but I am relieved to see your post. I think the connection is a valid one - even more so after reading your post.

Hi, yes I had a splenectomy for trauma 40 years ago. I've never noticed much difference, although I do get a bit breathless when doing hard exercise until my second wind seems to come into play. Spleens can inject oxygen quickly into the blood stream. Seals and other diving mammals have huge spleens. I get high haemoglobin, haematocrit, white cells, iron and generally thick blood. In the last five years my platelets have risen also, so I have thrombycytosis. Not sure yet if this is from the splenectomy or the bone marrow overproducing. My sister has MS too. I'm just being checked again with MRI as I have only had a one-off event and noticed some new symptoms last week.