Discussions By Condition: Multiple Sclerosis

Atypical MS or Ischemic Strokes?????

Posted In: Multiple Sclerosis 1 Replies
  • Posted By: Babette
  • July 12, 2010
  • 06:15 PM

Hi, I am 56 year old female. I was 32 (1985) when I was first diagnosed as having MS or small strokes, due to white matter lesions on my MRI. My LP was clean. My symptoms at that time progressed to where I could not walk a block, could not use my eyes to read because of the double vision, could not sign my name because my hands would not stop shaking, my body hurt from spasms and I had constant migraines. My hands and feet had numbess and tingling. This continued for many years, up until 1989, when I was placed on Premarin. I had a hysterectomy in 1978, and had only one ovary left, so the Premarin was to help with my estrogen. Little did I know that Estrogen would later be found to be useful for helping women go into remission.

However, I did go into remission for 14 years (1989 to 2003). During those 14 years I did suffer occasional bouts of headaches, pain and spasms, but they were short lived, and only occurred if I got too hot, or worked too hard.

Then, in or around 2003, I went off my Premarin due to the government's report that Premarin caused cancer of the breast. I had no idea about the link of Premarin to MS. Within a year, I began to start having serious headaches, then dizziness assailed me. I was so dizzy that I could hardly drive, it felt like I was on a boat, going up and down, for over a year and a half. Since then, I have had more MRIs and more white matter lesions appeared. I now have a large array of lesions. However, my lesions are NOT in the area that they should be for MS lesions. Nor do I have a positive LP puncture; I just had a negative LP with the highest overall protein at 46. Also, I do not have optic nerve damage. However, I have severe double vision, and migraines on a 24 hour basis. I had one severe ischemic stroke in March of 2008, and now have small strokes almost once a month; I no longer go into the hospital when I have them, as they are gone within a hour or two. By the time I am in the hospital, and in the CAT scan, it would already be over. If I go in for every problem, then I would worry that the staff would think that I am malingering. In 2006, I had a back surgery, and then it was discovered that I needed oxygen. No understanding as to why I need oxygen. I am overweight, but my lungs are not compressed, as my lung function works well. It appears to be neurological, although I do use a BiPap machine at night to sleep. The CPap caused me to much muscle pain. My oxygen oscillates back and forth, up and down from 94 to 71, up and down, for no obvious reason. It isn't because I am active or not active. It simply oscillates. Yet, no one seems to care, they just plug me with oxygen and say, keep it on, who cares WHY you need it.

I am a thinking person. I am married to a physician, who is as puzzled as I am. He is also a professor and teaches, so he trys to find out what is wrong with me. Together, we try to find someone who will help piece this puzzle of what is wrong with me ... and help put humpty dumpty back together again.

Thanks,

Babette

I have lost so much memory. Sometimes, I don't know who my husband is. I know that he is my husband, but I don't really know who he is. It is scary. My Neurologist now says that I do not have MS. Positive. NO MS. Just like that. No MS. He says it is vascular, but he does nothing for it. Sort of let's just wait and see what happens next.

I feel like I am left on a back burner to simmer without anyone watching me, and I might just simmer away to nothing. Should I not be taking something to prevent further damage??? He says no!! I am on regular meds. Celexa, Topomax, Omeprazole, Lipitor, Estradiol, Cyclobenzaprine, Gabapentin, Propranolol, pain meds, small amount of Diazepam as a muscle relaxer. But ... nothing ... absolutely NOTHING to prevent a further attack. NEVER have I ever been given anything to PREVENT an attack. Isn't this rather strange? Or, is it norm?? I would just like to know if this is all normal, and I am in good hands. I know no one can tell me for sure. But, does this sound normal to you doctors out there?? Just a quick note would be nice. Thanks.

Babette

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  • Hi, I am 56 year old female. I was 32 (1985) when I was first diagnosed as having MS or small strokes, due to white matter lesions on my MRI. My LP was clean. My symptoms at that time progressed to where I could not walk a block, could not use my eyes to read because of the double vision, could not sign my name because my hands would not stop shaking, my body hurt from spasms and I had constant migraines. My hands and feet had numbess and tingling. This continued for many years, up until 1989, when I was placed on Premarin. I had a hysterectomy in 1978, and had only one ovary left, so the Premarin was to help with my estrogen. Little did I know that Estrogen would later be found to be useful for helping women go into remission. However, I did go into remission for 14 years (1989 to 2003). During those 14 years I did suffer occasional bouts of headaches, pain and spasms, but they were short lived, and only occurred if I got too hot, or worked too hard. Then, in or around 2003, I went off my Premarin due to the government's report that Premarin caused cancer of the breast. I had no idea about the link of Premarin to MS. Within a year, I began to start having serious headaches, then dizziness assailed me. I was so dizzy that I could hardly drive, it felt like I was on a boat, going up and down, for over a year and a half. Since then, I have had more MRIs and more white matter lesions appeared. I now have a large array of lesions. However, my lesions are NOT in the area that they should be for MS lesions. Nor do I have a positive LP puncture; I just had a negative LP with the highest overall protein at 46. Also, I do not have optic nerve damage. However, I have severe double vision, and migraines on a 24 hour basis. I had one severe ischemic stroke in March of 2008, and now have small strokes almost once a month; I no longer go into the hospital when I have them, as they are gone within a hour or two. By the time I am in the hospital, and in the CAT scan, it would already be over. If I go in for every problem, then I would worry that the staff would think that I am malingering. In 2006, I had a back surgery, and then it was discovered that I needed oxygen. No understanding as to why I need oxygen. I am overweight, but my lungs are not compressed, as my lung function works well. It appears to be neurological, although I do use a BiPap machine at night to sleep. The CPap caused me to much muscle pain. My oxygen oscillates back and forth, up and down from 94 to 71, up and down, for no obvious reason. It isn't because I am active or not active. It simply oscillates. Yet, no one seems to care, they just plug me with oxygen and say, keep it on, who cares WHY you need it. I am a thinking person. I am married to a physician, who is as puzzled as I am. He is also a professor and teaches, so he trys to find out what is wrong with me. Together, we try to find someone who will help piece this puzzle of what is wrong with me ... and help put humpty dumpty back together again. Thanks, Babette I have lost so much memory. Sometimes, I don't know who my husband is. I know that he is my husband, but I don't really know who he is. It is scary. My Neurologist now says that I do not have MS. Positive. NO MS. Just like that. No MS. He says it is vascular, but he does nothing for it. Sort of let's just wait and see what happens next. I feel like I am left on a back burner to simmer without anyone watching me, and I might just simmer away to nothing. Should I not be taking something to prevent further damage??? He says no!! I am on regular meds. Celexa, Topomax, Omeprazole, Lipitor, Estradiol, Cyclobenzaprine, Gabapentin, Propranolol, pain meds, small amount of Diazepam as a muscle relaxer. But ... nothing ... absolutely NOTHING to prevent a further attack. NEVER have I ever been given anything to PREVENT an attack. Isn't this rather strange? Or, is it norm?? I would just like to know if this is all normal, and I am in good hands. I know no one can tell me for sure. But, does this sound normal to you doctors out there?? Just a quick note would be nice. Thanks. BabetteYou might want to check whether you have spongiform encephalitis from glutamate toxicity problems, which can be caused by too little BH4 to excrete the amount of protein you get in your diet or genetic limitations in making BH4 (MTHFR 1298 mutation and/or CBS 699 mutation) or simply from not enough magnesium (it requires BH4 and magnesium to excrete ammonia, a build up of ammonia depolarizes the NMDA receptors so the magnesium ion gating them falls off and calcium is allowed into intracellular space which damages neurons). The result is vacoules in brain tissue which get larger over time as more insult occurs. You can try methylfolate, vitamin C, and niacin/niacinamide, to raise BH4, a low protein diet to spare BH4, magnesium to help excrete ammonia from protein breakdown, and magnesium to refill the NMDA channels to protect your brain. Also you need active B vitamins for your methyl cycle to work and the urea cycle needs methyls to work (inadequate methylation will cause ammonia buildup). I suggest you check into this because estrogen is an NMDA antagonist - so that would explain why estrogen is helping you. You can get a serum ammonia test pretty cheap, for instance at www.prepaidlabs.com. But unless you are doing something really obviously wrong, like eating a high protein diet or a high blood sugar diet (which also lowers BH4), which young people can get away with in SPITE of its being wrong (because their hormones help them out), you might have a genetic problem. You can get a comprehensive genetic test at www.heartfixers.com, which tests 30 genes related to heart, blood pressure, neurotransmitter production, and urea cycle. I think you will find you are having these problems due to - probably many - genetic mutations in the methyl cycle, BH4 production, urea cycle, and neurotransmitter production. This is an expensive test but IMHO opinion it is worth it because your genes never change so over time as new studies are made, more info will be available at no extra cost to you (just an internet search). However it may not be necessary to take this test -- you could just go here to follow the protocol to correct methyl cycle issues (plus following the above to correct BH4 issues): http://forums.wrongdiagnosis.com/showthread.php?p=241778&posted=1#post241778When you get there, register, then enter a note telling your story. Someone will direct you to the protocol, whose core is active B vitamins, already in the form the body needs in order to get around any genetic enzyme problems you may have in making these vitamins usable. It works for most people. There is an interrelation between these cycles and thyroid conditions so if you have a thyroid problem you might need to straighten that out before you can see benefits from the above. Tell your doctor husband to go to the heartfixers website for sure since they have the biochemistry all laid out and it will help you understand what might be wrong and what you would be trying to do to correct it.
    Anonymous 42789 Replies
    • September 23, 2010
    • 04:26 PM
    • 0
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