another wacked out theory

    • Anonymous
      January 6, 2010 at 11:40 pm

      wacked out theories have become a hobby of mine so dont knock it. I know by saying this I will loose any credibility I have left but here it goes…
      ok so I am doing my usual obsessive looking up old labs to see what they mean and cross referencing them with other stuff . I still believe the last one was caused by a bactrim reaction I look at my family history, three generations dominated by neurological defects. my sister, my dad and his sister and aunt have scizophrenia, his uncle had MS but was diagnosed before MRIs and never had one later. my sister and I both were diagnosed with petite mal seizures at the onset of puberty and it eventually went away in months.

      together with my bactrim reacting, sun sensative, alchohol intolerant, menstrally agrovated muscle condition that has a tendency to spontainiously remiss for years at a time. what if I have individual catalysts. what if this is metabolic meaning I have some sort of inherited inability to metabolize weird stuff I come in contact with. I read that it is estimated that up to 40% of scizophrenia is actually caused by pyroluria. scizophrenic porphyria. what if I have porphyria?

    • Anonymous
      January 7, 2010 at 12:27 am

      Dear Sweet Tara,
      I think you need to stop googling. We all do it a bit, but I think it isn’t healthy for you to wade into it as deeply as you do. Listen to your new doctor in San Francisco and quit straining your brain so much. This is posted with thoughts of only wanting the very best for you.
      Laurel

    • January 7, 2010 at 3:49 pm

      Tara,

      I am an infrequent visitor here so I have not read all of your previous posts. However I would like to reassure you that there is at least one other person who has investigated her medical history and symptoms to the point of obsession.

      There were others too who used to post here who tried convoluted paths to get a grip on their rare disease. I remember a thread here that went on for weeks about CIDP being caused by childhood exposure to large bodies of water. Ten years ago there were also exaustive threads about the benefits of food additives and vitamins. My personal favorite conspiracy therory is that CIDP was caused by Chinese germ warfare.

      I think you should ask your phsyician to tell you why you do NOT have porphyria. Or leaky gut syndrome. Or a yeast infection. Or the ever sneaky low B12 damage. These are all culprits I investigated in the last 10 years.

      It took literally years for me to accept that CIDP is just plain bad luck – like being run over by a bus. I was helped by a few visits with a mental health clinic and long term low dosage antidepressants (nortriptalin). I started a new hobby – quilting – and now spend most of my waking time obsessively reasearching patterns and fabrics. Lots more fun than medical sites.

      You know your own body best and deserve answers to your questions and fears. However once your doctor has given you a thoughtful, respectful and complete response you need to accept his medical knowledge. Of course if you don’t trust your doctor I think you should find another medical team.

      I hope you can find some mental rest. I am an advocate of getting guidance from a mental health professional and using appropriate mood leveling drugs. You have a rare disease with no known cause or cure. That’s not an easy thing and that’s why it’s helpful and important to get emotional support from the forum.

      Gentle hugs,
      Flossie

    • Anonymous
      January 7, 2010 at 4:48 pm

      [QUOTE=Flossie]Tara,

      I am an infrequent visitor here so I have not read all of your previous posts. However I would like to reassure you that there is at least one other person who has investigated her medical history and symptoms to the point of obsession.

      There were others too who used to post here who tried convoluted paths to get a grip on their rare disease. I remember a thread here that went on for weeks about CIDP being caused by childhood exposure to large bodies of water. Ten years ago there were also exaustive threads about the benefits of food additives and vitamins. My personal favorite conspiracy therory is that CIDP was caused by Chinese germ warfare.

      I think you should ask your phsyician to tell you why you do NOT have porphyria. Or leaky gut syndrome. Or a yeast infection. Or the ever sneaky low B12 damage. These are all culprits I investigated in the last 10 years.

      It took literally years for me to accept that CIDP is just plain bad luck – like being run over by a bus. I was helped by a few visits with a mental health clinic and long term low dosage antidepressants (nortriptalin). I started a new hobby – quilting – and now spend most of my waking time obsessively reasearching patterns and fabrics. Lots more fun than medical sites.

      You know your own body best and deserve answers to your questions and fears. However once your doctor has given you a thoughtful, respectful and complete response you need to accept his medical knowledge. Of course if you don’t trust your doctor I think you should find another medical team.

      I hope you can find some mental rest. I am an advocate of getting guidance from a mental health professional and using appropriate mood leveling drugs. You have a rare disease with no known cause or cure. That’s not an easy thing and that’s why it’s helpful and important to get emotional support from the forum.

      Gentle hugs,
      Flossie[/QUOTE]
      dear flossie, i agree and disagree w/you. think its important to research what is happening to your body, but also, have to have balance. i never have had total trust in any of my doctors, have gone back to the books, etc. after each appointment, and between what i find out and his knowledge, hope i’m getting the best care i can. my neuro wants me to have ivig infusions, take prednisone, and take imuran…too much for me. if i did as he said, the side effects from the above could very well be worse than the illness. i think any autoimmune disease has many causes; our bodies contain the history of our entire lives, so its pretty impossible to pick out a trigger; instead i think its an accumluation of events and a genetic predisposition. i tried quilting about 20 yrs ago and wasn’t that good at it, thank god i love to read and have pets that keep me busy:p

    • January 7, 2010 at 5:37 pm

      Patty,

      Trusting the doctors can be hard these days when there are restrictions on our choices. You are absolutely correct that we are ultimately responsible for supervising our own health care. I have been wonderfully lucky on my whole medical team – including my dentist who first noticed my gums were getting unhealthy.

      I really miss my Husky and our walks. He’s been gone three years and I have gained 30 pounds and my blood pressure has gone up 30 points. There are days now that I literally don’t step off the front porch.

      I have a lot of fun quilting. I am not especially good at it but it does let me play with color. My thumbs are not very useful so it is nice that the actual work of quilting these days is usually done by the sewing machine. Any activity that makes you forget your symptoms – reading, quilting, organizing the spice shelf -is a godsend.

      Flossie

    • Anonymous
      January 7, 2010 at 7:06 pm

      As soon as you said Eosinophils, my ears perked up.

      Have sinus problems, too?

      Google “Churg Strauss Syndrome”…I think you’ll be interested. I have all the symptoms except the elevated eosinophils.

      Elmo

    • Anonymous
      January 8, 2010 at 12:31 am

      I agree with both Flossie & Patty as to what causes CIDP, or most illnesses for that matter. When I came down with CIDP almost 8 years ago (a very severe case, leaving me with some severe residuals), I was at first told it was caused by walking pneumonia that I had battled all winter. I knew I had a cough, the result of a cold I picked up from a student 4 months before. But many people in MN battle colds all winter & never come down with such a severe illness as CIDP. Then I decided it was just “bad luck” & that since I was physically in shape, slept well, ate well, etc. that there was nothing I could have done to prevent it. I still believe that…

      But when visiting my dermatologist a few years ago, he mentioned that he had 6 other patients with CIDP, but none as severe as mine. I live in a small town, so I was surprised to hear this. Then he asked me if I had had ecsema as a child; now I had severe ecsema until the age of 21 from birth. Then he asked if I had had allergies. Again I had severe allergies from birth to my late 20s. Both autoimmune, CIDP autoimmune. I now believe that I was born with the prediposition to another autoimmune illness, & all I needed was a trigger to come down with this, which happened to be a bad cold to set off my immune system.

      Maybe it was the timing of the cold, maybe it was just all bad luck. But I am way past wondering how I got it, still learning to deal with it, however. I try not to let CIDP dominate my life, try as hard as I can to still enjoy the simple things I can still do. I can walk again with AFOs & a cane. I do take a transport chair when we travel by airplane. We try to spend as much time in the summer at our isolated rustic cabin. I might only be able to get down to the dock twice a day, but swim, fish & boat ride while I am down there. I had to give up skiing, skating & tennis, but we still snowmobile as much as we can. The hardest part is still the fatigue, I find I must sleep almost 12 hours a day to enjoy myself & feel halfway normal.

      So, it is good to research the illness, get the best treatments available, etc. But to let CIDP dominate every aspect of one’s life is a waste of your time. Life is short, & I hope someday we will all learn the answers to our questions. In the meantime, live life & enjoy whatever you are able to do! This weekend we will travel to our daughter’s home 3 hours away to help put my soon to be granddaughter’s nursery together. I can sit while I iron the valances, the crib bedskirt & quilt to hang. Our son is gettin another chocolate lab this month, we will help out with the puppy as much as we can. Then we will leave this arctic tundra & spend 2 months in Naples, Florida. I cannot play tennis or golf( never did do that one, anyways), but I can swim in the pool, enjoy the ocean & go to a few MN Twins games. We will fly & rent a car again, as I decided that 4 days of driving 8 hours each day was too much for me!
      Pam

    • Anonymous
      January 8, 2010 at 2:40 am

      thanks Pam, you made me feel better today

    • Anonymous
      January 8, 2010 at 10:24 am

      Hi Tara,
      I saw your post, where you said Dr. Sahagian was awesome.
      So what happened with the tests he ordered for you?
      What is the end result?
      Or did you just stop going to him?
      Just when you where finally getting somewhere–did you just stop going to him?
      Ken
      (KEDASO)

    • Anonymous
      January 12, 2010 at 6:37 am

      Keep on truckin Tara,

      you won’t find a cure but you are certainly going to know your body pretty much inside and out. You may even find out things that enrich you life by your research. You may realize that other ailments are in combination and that is what makes your condition as unique as it is. With this will eventually come possibly some relief followed by better living and then acceptance while keeping a watchful eye out for changes.

      I have made huge discoveries I believe in and now have my doctors attention.
      They are phenomenon unexplained but accepted at some point. proven by trial and error. My obsession and push to know more and more trying to put a finger on something b/c it doesn’t make sense all of this. Everyone is different. My wife is an acceptor. I am not. My mind is trained to push and find out more with whatever I do in life. I am a very curious person. With everything.

      I want to know why, how it works, how to make it better. It gives me great satisfaction to do so.
      My being the way I am has saved me time, money and pain in life, in general, and has satified my mind. I have accepted that I will always have my CIDP.
      We are the the Good and the Bad.

      We see you struggle through all of this as we all have for ourselves and loved ones. Keep on Truckin, find out as much as possible. you will benefit in the end.

      My two cents for what its worth.

    • Anonymous
      January 12, 2010 at 7:45 pm

      thank you for your replies. I get in my grandious moods and this is what happens.
      but I am so absolutely tramatized by the fact that I had spent 8 years with no anwsers and the only answers I had were taken away by dr sahagian but some times you have to make a mess to clean it up. I trust him when he said that I never had guillain barre syndrome and therefor blows cidp out of the equation. I still have faith and I hope the skin biopsy and devics result are in tomorrow
      I am tramatized because just to use one example. one year after the big one I had a horrible pain in the back of my neck and head along with severe numbness and weakness. I went to the same ER that saw me paralyzed one year earlier. I told them that it felt like I had been hit in the back of the head with a shovel they gave me adivan and sent me home. I came back a few days later and they gave me delaudid and sent me home I found out recently that my MRI one year later revealed that that was Transverse myelitis. one example of many with being over looked. I will never take a benzodiazapine scipt as treatment again.
      I know how over board I get but I am not traumatized by the reading I have done I feel armed. I get excited and awe struck at how vast the differentials are for my symptoms. I am facinated. Now I know when it happens again that there are other test they can do. One definition of insanity is doing the same thing over and over again expecting to get different results. I have had 5 lumbar punctures and never any elevated protiens. I have been through the MS diagnostic dead horse beating 3 times. there are so many other diseases out there that this could be and dr sahagian has not only opened my eyes to this but he was the one who started with asking me “what have you been exposed to”. I said “isnt that moot?” and he said no. ultimately I will not even show this theory to my doctor as long as he seems to be doing all that he can to figure this out. I know I cant think my way out of this but it is my nature to try. Also it is very important to know if I have catylists that bring me out of complete remission so I can avoid them!!!
      It is also important to note that because i have been diagnosed with nothing I am being treated with nothing so I am growing quite desperate as time passes and more symptoms pile on complicating the possibility of ever being diagnosed

    • Anonymous
      January 13, 2010 at 7:04 am

      Tara,

      List out all of your tests to date. have you had your entire spine MRI’d?
      A thoracic CT as well as head. I know you had alot of bloodwork but how
      about the mechanics of things. Just curious–tim–

    • January 13, 2010 at 8:28 am

      About the CT’s, Lateley there has been MUCH hoopla about how much radiation is emitted from ct’s. Mri’s would be a better choice from a safety standpoint and they are more conclusive. My other son had a sinus ct and the tech mentioned that it would be a good idea NOT to have any more ct’s for at least 2 years. The following day coincidentally, there were news reports that the med prof are reccomending not to get ct’s if you don’t have to, especially the brain. Of course now I am freaked out because besides the ct, we also had 2 panorexes done for his braces:confused:
      Dawn