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  • Snowden1
    replied
    Hi, most people don't ever drain it all out. That really a good amount. I am sorry the instils stopped working, I had the same thing happen with my first one. I thought they were goin to be the cure for me. Then I did them a long time and noticed they were making me worse. What to do, what to do??

    I was so hoping those would work for you. What are you thinking of trying next? Has your doctor recommended anything?

    Leave a comment:


  • sshannon74074
    replied
    I did notice something strange during my instills. Although I had just gone to the bathroom, when the catheter was inserted the nurse was able to drain 50 mls of urine each time. Granted 50 mls is not that much but I was incapable of draining that naturally.

    Leave a comment:


  • sshannon74074
    replied
    gave up on the instills. after the third, they were not helping

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  • healingthoughts
    replied
    Colleen,

    That is very interesting. My IC symptoms started in November 2009 a few weeks after I got my seasonal flu shot. I never had any surgeries or accidents or any health issues prior to this. And it was the first time in my life that I had the flu shot. Needless to say, I did not get it again this year.
    I have asked my doctors about this and they say there is no connection between IC and the flu shot. However, it does make you think.

    Anyone else whose IC symptoms started after a flu shot?

    Leave a comment:


  • Snowden1
    replied
    It does make perfect sense that when our bodies are weakened (by sugery, flu, etc) viruses and bacterias have a perfect opportunity to enter and start causing problems that lead to autoimmune disorders. I know after I had surgery and I was given (tons) of antibiotics to rid infections my body was so bad. I couldn't take the antibiotics without Zofran and another expensive drug for nausea they give to chemo patients. I think antibiotics break down our bodies natural defenses - especially in the gastro area. When this happens I think we are open to anything.

    Leave a comment:


  • cosake
    replied
    It's interesting because I don't recall having any viruses or illnesses immediately before my MS or IC diagnoses. I suppose it's possible that I came in contact with a virus but didn't get any symptoms from it ?

    The one thing that I did have in the weeks before my MS symptoms that led to diagnosis, however, was the seasonal flu shot and swine flu shot.

    But, I've had the seasonal flu shot every year for quite some time due to my autoimmune blood disorder and the swine flu shot is very similar to the seasonal flu shot and both use inactivated virus.

    It certainly makes you think.

    Leave a comment:


  • cmclien
    replied
    Shannon - I wanted to mention one more thing. I think you're on track as far as possibly a virus starting IC, that is if its actually autoimmune. They don't know how or why autoimmune conditions start but the theory is that a virus starts most of them, though it doesn't have to be epstein barr. For example my niece developed juvenile diabetes when she was around 12. This happened within about 6 weeks of having a really bad flu virus that kept her out of school. The specialists have told my sister that this kind of the working theory on why and when people develop autoimmune disease but they don't know for sure. After my second child was born and my immune system was down I came down with a bad case of strepp. After that I soon developed hashimotos thyroiditis which is also autoimmune. I'm sure alot of people can point to an illness in their life before they developed an autoimmune disease.

    Leave a comment:


  • cosake
    replied
    @ sshannon74074 - Eppstein Barr is thought to be a possible trigger for MS as well even though it wasn't mentioned in this blog. It could explain my MS and IC diagnoses. I had a bad case of mono when I was 16. Didn't get the MS or IC diagnoses until age 38, but if I think back, I believe that I've had mild symptoms of both MS and IC for a number of years.

    I had the autoimmune blood disorder long before I ever got mono; however the trigger for the blood disorder was attributed to a virus I picked up at a girlfriend's house.

    Autoimmune diseases are certainly fascinating to learn about and how they link together, etc. I can't wait until we learn more about autoimmune problems in general - even if not specific to a diagnosis.

    Leave a comment:


  • sshannon74074
    replied
    Thanks Teresa, god bless you too!

    Leave a comment:


  • Snowden1
    replied
    sshannon,

    That is great that the instil was a help to you today. I pray that this continues to work for you!:woohoo:

    Leave a comment:


  • cmclien
    replied
    P.S. Glad you found some relief today!

    Leave a comment:


  • cmclien
    replied
    Though it is suspected, I don't think that its been proven that it is autoimmune but it would sure be nice to have an actual known "cause" because then perhaps treatment could become more specific. It would of course be nice to know the "why" of why it is happening to us. Of course there are no cures for the other autoimmune diseases, only treatment.

    Leave a comment:


  • sshannon74074
    replied
    thanks for the kind words Bob's wife. I agree that it probably some type of autoimmune link but I've been reading a lot about how the epstein barr virus can cause this. there's all sort of stuff on the web. check it out.

    http://www-epsteinbarrvirus.com/blog...mmune-disease/

    I just had my first bladder instillation today. It was a cocktail of sodium bicarb/lidocaine/elmiron. It gave me instant relief and is continuing an hour later. We'll see how long it lasts and I plan to try this 2 times a week for a while.

    Leave a comment:


  • cosake
    replied
    I would hope to see an answer to this in my lifetime, but I don't expect it.

    I got ITP when I was 6 years old. Autoimmune blood disorder. May be genetic -they don't know why it happens.

    I got MS last year (38 yo). Another autoimmune disorder. They don't know what triggers the MS either.

    I got IC last year (38 yo). A 3rd autoimmune disorder that they don't know why it happens.

    It's the story of my life - I'd really like to find out so that I know if I need to worry about my boys or not, or if there are extra precautions or tests they should have, etc.

    Leave a comment:


  • cmclien
    replied
    Teresa,
    They are both autoimmune diseases. People with sjogrens and/or lupus often have alot of pain, sjogrens especially can give muscle/joint/chest pain. Most people just think of sjogrens as a disease that causes dry eyes and mouth but it can cause many other symptoms and not always those. They are often screened by a simple blood test that your pcp can do but a rheumatologist is the better one to see about these as the blood tests are not the only factors to consider.

    Leave a comment:

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