Wasatch, ATTN: want your opinion? MS VERSES CFIDS

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Feb 26, 2007.

  1. karinaxx

    karinaxx New Member

    i am just making an appointment with the Neurologist and got the usual reply about CFIDS not beeing diagnosed and beeing a collection of different D.
    it made me mad and i have to hold myslef back, not to start a war of words, followed with hundreds of research papers thrown into his direction.

    what is your opinion, do you have both or have you been miss diagnosed?

    if i should indeed be diagnosed with MS too (have been diagnosed with CFIDS and a son with CFIDS) than i am sure that i am suffering of both, since i do have the typical symptoms of both! Which would confirm my theory that we all have clusters of Autoimmune D.

    Just interested in your opinion on that, since you have been diagnosed with both.

    karina

  2. karinaxx

    karinaxx New Member

    my brain is very bad these days, so bear with me , if i dont make sense.
    First of all, i dont think this is what he ment.He said in german, so i have to translate and what he said was more like: it is a desease which can not be diagnosed and it is a mish mash of not clear symptoms and deseases.

    The later can be understood in many ways......but the first is unacceptable.
    You say, you think the same way, well, in a way i agree, but still disagree. There are very clear compostion of symptoms over a time period and with the recent added different possible tests, i think it is much clearer than ever before, a distinct illness, with a set of possible biological and clinical abnormalities.(puh,spelling???)

    What makes it look like different deseases, is the fact , that most of us have several undiagnosed or diagnosed autoimmune deseases and they come in clusters in family or even the same person. You find many here, which have been diagnosed with cfids and Lupus, or FM and CFS, or one of the many other autoimmune deseases.
    Or we have a set of different Phathogens.
    The main point is, we ALL are not reacting to these Enviromental Factors as we should.In MS as in other autoimmune deseases,it is common idear now, that whatever Virus or other Phatogen attacks us, part of our immune system attacks our own cells, instead of the pathogen. The common factor is most problably the CNS, though that is still disputed and open for a lot of research.

    That is why i am so interested in hearing from people who have been diagnosed with CFIDS and MS, because most of us here are so knowledgeable and sensitized to our own symptoms and bodys, that we are often the better judge of what is realy going on, than any other doctor.

    Those who have kids and family members with CFIDS and live under the same roof, all make the same observation: one healthy one gets the flu and all the others with CFIDS or FM start having a FLARE!(or vice versa) The same observation has been made in MS patients.

    I can see it happening all the time in my house with my son and the others under our roof.

    If you want to know about my symptoms, than you can read it up under my post about Adverse Drug Reaction in FM/ME/CFIDS/MS. I wrote about the changes in my symptom pattern there.

    I hope it makes a bit of sense and i did not make to many spelling mistakes; it makes me allways feel like a fool, when i read my posts full of mistakes after. Cant help it, on a day like this my brain is just doing strange stuff.

    karina

    p.s. actually i have written allready once on wasatch post about this and about my symptoms.
    what i really want to know from wasatch or others, what do you FEEL is going on, not what we think......as i said above.







    [This Message was Edited on 02/27/2007]
  3. karinaxx

    karinaxx New Member

  4. karinaxx

    karinaxx New Member

    yes , your right, we can adress these subgroups better if we are able to seperate the symptoms and D.
    i just ask myself many times, what use is it to treat the Pathogens, if they turn up again and again? It is somehow not adressing the real issue, the underlying problem.
    just a thought ..... sure many of us have this doupts.

    hope wasatch sees this, would realy like to hear from her.
    by take care
    karina

  5. karinaxx

    karinaxx New Member

  6. karinaxx

    karinaxx New Member