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Neurology (Expert Forum)
Re: Hemolytic Anemia, Cold Agglutinin, IgM, Entire Left Side is Numb/Burning Tingles
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Re: Hemolytic Anemia, Cold Agglutinin, IgM, Entire Left Side is Numb/Burning Tingles
by CCF Neuro, Jan 01, 1995 12:00AM
Posted By CCF Neuro on November 21, 1998 at 11:41:37:
In Reply to: Hemolytic Anemia, Cold Agglutinin, IgM, Entire Left Side is Numb/Burning Tingles posted by Judy Hubbard on November 20, 1998 at 13:18:11:
Hi, I'm not sure if this is the correct forum, but I am certainly glad to have found you! This past labor day I went to the ER for a virus that included the worst sore throat I ever had and very watery/swollen eyes with floaters. I was told I had an unidentifed virus (not strep) and given amoxylin. I noticed some abdominal pain around the same time but thought it was probably related to the mystery virus. During the next week I began having daily migraines, trigeminal neuralgia, and optical neuritis (I.D.'d by my Dr.).
Then one night I had an incredibly painful shooting sensation from the back of my head and it seemed to shoot straight through my middle down to my waist. During this time the abdominal pain was also getting much worse. A trip to my internist left him puzzled by my symptoms. A CT scan revealed splenic infarct &splenomegaly. I was not treated because I was referred to a hematologist. Three nights later I had what seemed to be a horrific migraine in the right side of my brain with tons of flashing lights, nausea, etc. I woke up the next morning with terrible visual distortion and my entire left side was extremely numb and tingling. It's as if you could draw a straight line down my body from the top of my scalp to my feet with the numbness entirely on my left side. My internist thought it might be a mild stroke event. By the time I got to the hematologist a couple of days later, my hemoglobins had dropped to 6.8 and I was hospitalized for hemolytic anemia. Further testing and elimination brought me to the diagnosis of Cold Agglutinin Disease, probably related to the aforementioned "mystery disease" because no other causative reason was found. As of yesterday my hemoglobins were back up to 11.7 and I was warned about keeping warm (Yuck!). Also Prednisone was prescribed ( to be taken for the next month.
The numbness continues as does much of the optical neuritis. No one is sure what to make of these symptoms. I suggested that I could go to a neurologist but was told to wait and see what happens with the prednisone (just started it yesterday). A web search revealed a couple of references about IgM antibodies and their effect on myelin. Albeit they were rather technical for me, I noticed that prednisone was also the first-line treatment for this problem as well but am wondering about the prognosis. Will the current numbness go away likely? I read somwhere that prednisone wasn't that effective in suppressing Cold Agglutinin Disease, inasmuch as recurrences are concerned. So, if there is a relation, will the numbness recur as well? Should I be seen by a neurologist? (I don't want to waste time if there is something I should be doing). I am rather certain my hematologist is not aware of any connection between IgM and demyelination. Could this be causing my numbness and visual problems? If so, why just on my left side? Could it have a relation to the headaches I experienced on the right side of my brain? Sorry for so many questions, it just seems that I'm improving in some ways and not at all with the numbness and neuritis (although the headaches did go away). Your thoughts on this are greatly appreciated! Judith Hubbard
P.S., with this numb left hand, typing this novella was quite a feat!
answered
In Reply to: Hemolytic Anemia, Cold Agglutinin, IgM, Entire Left Side is Numb/Burning Tingles posted by Judy Hubbard on November 20, 1998 at 13:18:11:
Hi, I'm not sure if this is the correct forum, but I am certainly glad to have found you! This past labor day I went to the ER for a virus that included the worst sore throat I ever had and very watery/swollen eyes with floaters. I was told I had an unidentifed virus (not strep) and given amoxylin. I noticed some abdominal pain around the same time but thought it was probably related to the mystery virus. During the next week I began having daily migraines, trigeminal neuralgia, and optical neuritis (I.D.'d by my Dr.).
Then one night I had an incredibly painful shooting sensation from the back of my head and it seemed to shoot straight through my middle down to my waist. During this time the abdominal pain was also getting much worse. A trip to my internist left him puzzled by my symptoms. A CT scan revealed splenic infarct &splenomegaly. I was not treated because I was referred to a hematologist. Three nights later I had what seemed to be a horrific migraine in the right side of my brain with tons of flashing lights, nausea, etc. I woke up the next morning with terrible visual distortion and my entire left side was extremely numb and tingling. It's as if you could draw a straight line down my body from the top of my scalp to my feet with the numbness entirely on my left side. My internist thought it might be a mild stroke event. By the time I got to the hematologist a couple of days later, my hemoglobins had dropped to 6.8 and I was hospitalized for hemolytic anemia. Further testing and elimination brought me to the diagnosis of Cold Agglutinin Disease, probably related to the aforementioned "mystery disease" because no other causative reason was found. As of yesterday my hemoglobins were back up to 11.7 and I was warned about keeping warm (Yuck!). Also Prednisone was prescribed ( to be taken for the next month.
The numbness continues as does much of the optical neuritis. No one is sure what to make of these symptoms. I suggested that I could go to a neurologist but was told to wait and see what happens with the prednisone (just started it yesterday). A web search revealed a couple of references about IgM antibodies and their effect on myelin. Albeit they were rather technical for me, I noticed that prednisone was also the first-line treatment for this problem as well but am wondering about the prognosis. Will the current numbness go away likely? I read somwhere that prednisone wasn't that effective in suppressing Cold Agglutinin Disease, inasmuch as recurrences are concerned. So, if there is a relation, will the numbness recur as well? Should I be seen by a neurologist? (I don't want to waste time if there is something I should be doing). I am rather certain my hematologist is not aware of any connection between IgM and demyelination. Could this be causing my numbness and visual problems? If so, why just on my left side? Could it have a relation to the headaches I experienced on the right side of my brain? Sorry for so many questions, it just seems that I'm improving in some ways and not at all with the numbness and neuritis (although the headaches did go away). Your thoughts on this are greatly appreciated! Judith Hubbard
P.S., with this numb left hand, typing this novella was quite a feat!
answered
