How to get diagnosed and where to start (to get better :))

Discussion in 'Fibromyalgia Main Forum' started by sunnysideliving, Apr 7, 2003.

  1. sunnysideliving

    sunnysideliving New Member

    Hello,

    I am new to this message board, but very happy to find you! It seems a lot of people have similar symptomps as me.

    Although, my symptomps are varying, recently I have:
    -headache
    -mind fog
    -slight fever (37.1 C)
    -short of breath
    -tiredness/fatigue
    -blurring eyes
    -muscle pains (started again in the last three days)

    Some strange things I recognized:
    - my coffee consumption raised
    - my weight went up (in quite short period of time)
    - sometimes getting impatient (totally different as before)
    - hypertensive
    - not focused
    - caring less about my environment (flat, office, etc)

    I have been having these problems for 2.5 years now (I am 30 yo.). I visited doctors from the very beginning, but mostly without any result.
    All the big examinations:
    - CT (whole body)
    - MRI
    - more than 200 hundred blood tests
    - x-ray of sinuses
    - x-ray of lung
    - ultrasound of liver, spleen
    - sample of spinal fluid (actually, I do not know the english name of it)
    - EEG
    - ECG
    are negative.

    During the blood tests, three things were found:
    - Epstein-Barr antitests (indicating an EBV infection, but the correct time could not be defined)
    - (continously) elevated liver values (ASAT, ALAT)
    - previous infection of toxoplasma virus

    One doctor believes that EBV infection may led to mononucleosis. Although, he can not offer any treatment.

    All the other doctors believe that I have headache and mind-fog becasue of stress and/or "subconcious" depression.
    Just for the fact, I am not a depressious person and always try to look at the bright side.

    First of all, I would like to get diagnosed. Is this CFS or not? Is my immune system down? And so on. Could you recommend some articles about what tests are used to identify CFS (I know it can not be done for sure)? What tests are used for immune system? I read about a kind of yeast test...

    Secondly, what treatments ar recommended to easy my symptomps. Also read about, Cavemen diets as a good try. Anyone who experienced this?

    Last but not least, how can I find a specialist in a specific country. Is there a list of MDs in this specific area? Actually, I live in Finland.

    I do appreciate all of you giving hand!
    Cheers,
    Andras

    PS: I will feel better!
    WebMaster: Quite a nice message board! Keep up your good work!
  2. Bellesmom

    Bellesmom New Member

    Am bumping up
  3. sunnysideliving

    sunnysideliving New Member

    As I said I have some kind of mind/brain fog, so now here are some additional symptomps :

    - sore throat
    - tinnitus (left ear)
    - muscle twitch (not so often)
    - joint problems
    - difficulty to remember (as you noticed :)


    Today I have strong pain in both of my legs, but my head is almost clear. Is this a pattern? :O

    I spent one week in a hospital to figure out what is the problem with me. It was strange that I had no slight temperature (~37 C) but quite normal (36,4 C). Of course, I rest there a lot. Are these connected?

    I do hope you answer soon!
    At Friday I have to go back to my doctor and after spend week in the hospital she thinks I just made up all these things. (temperature, headache, brain fog, pain)

    What tests should I suggest to figure out if I suffer from CFS or not? Even better if we can find out what causes these symptomps.

    Thank you all in advance!

    Cheers,
    Andras
  4. kgg

    kgg New Member

    I checked the good doctor list on this site and it doesn't include Finland. I would do a google search for chronic fatigue syndrome and Finland or functional medicine and Finland. Or search for support groups in your area for CFS/FMS and get in contact with people in the group. Who do they use for a doc? This is not in your head, and don't let the doc tell you otherwise. They just function in a small box.

    Don't know if these suggestions will help, but it is where I would start.

    Is there anyone else from Finland on this board?
  5. sunnysideliving

    sunnysideliving New Member

    Hi,

    Really thanx for the answer. I was worried to be not seen. :)

    I will try to find some specialist here in Finland. Although, this is not too easy for me. Actually, I am not Finnish, but Hungarian. In addition, I do not speak the language so well to make searches on this topic.

    However, your suggestion reassured me to not let this just go. I will ask my finnish friends for help and will find a specialist.

    I read all the way that people are diagnosed with CFS, FM. Do you know how can it be done? I will get my doctors to do any test I need to reassure that I am not a hypochondric.

    Thanks again!
    Take care,
    Andras
  6. mlw

    mlw New Member

    Daer Andras:
    All these symptoms sound like Chronic Fatigue Immune Dysfunction. I had the same thing about 3 years ago and my doctor found elevated titres of EBV(Epstein Barr virus). This virus causes mono. It is in the herpes family and is similar to CMV (cytomegalor virus). I am not sure if I spelled it correctly. Anyway, I recommend you contact either an immunlogist or an infectious disease doctor. They can run many tests-herpes, mycoplasma, etc. As you know virus cannot be killed by antibiotics, they just go dormant. You must take mega supplements such as COQ10, whey protein, multivitamins, perhaps B12 injections, etc, and above all plenty of rest and no stress. The doctor will provide all the information. Hopefully in Finland there must be good doctors. Good luck and I hope you feel better! MLW
  7. layinglow

    layinglow New Member

    Good Answers in the post above. Another route I have found successful in finding someone to diagnose and treat Chronic Fatigue Syndrome is to go to one of the internet search engines and type in "Chronic Fatigue Specialist Finland". I just did so on Yahoo's Search Engine, and found 1500 "hits". You will need to sort through them, and note Drs. and Hospitals with Specialist and Treatment available.

    I did find one reference to FM/CFS treatment here at immune support.
    There is an article on this site that mentions the Finnish Rheumatism Association, in Kangasala, Finland. You might look them up.
    Jorma Viitanen, MD, is Rheumatologist and Chief Physician, Sisko Ronni, MD, is Specialist in Physical Therapy and Rehabilitation, Sirkku Ala-Peijari is Physiotherapist, and Kirsti Uoti-Reilama, MD, is Rheumatologist, Rehabilitation Institute of the Finnish Rheumatism Association, Kangasala, Finland.
    Hannu Kautiainen is Statistician, Rheumatism Foundation Hospital, Heinola, Finland.

    Address correspondence to: Jorma Viitanen, MD, Reumaliiton Kuntoutumislaitos, FIN-36200 Kangasala, Finland.


    Another suggestion would be to start a new topic....I know there are some here from Finland. You might title it..
    "Help--Doctor Needed in Finland".

    Best wishes,
    LL


  8. sunnysideliving

    sunnysideliving New Member

    Hello Mlw and Layinglow,

    Thanks for the giving hands! I will search the internet and call those doctors to get an appointment.
    I was just disappointed (NOT depressed as some doctors suggest ;) that I am treated as a hypo.

    It is a great news that there are so many specialists here in Finland. Actually I live quite close to the capital, so I can not imagine to not to find someone here.

    Yes, I was also afraid of these symptomps similar to CFS.
    As I wrote I was diagnosed with EBV (but forgot to mention CMV - cytomegalo virus).
    Even the one doctor believes in Mononucleosis as being my case, refuse the existence of CFS.

    Hey, I just read a post about problems with spelling. I do have problem with writing (both hand and typing), because of lot of errors. (However, I am trying to fix them systematically.)
    Also, having problem to try the correct words. Until now, I thought it is just the normal memory problem I have, but now I doubt. I speak here English, that is a second language for me. Tough, I believed I am just getting to forget these words. However, as you mention now I have same problems with Hungarian. (Also explained as coming from not used too much.)

    Anyway thanks for the answers.
    I will keep you posted.

    Did I already mentioned how happy I am today? I have very slight mind fog. (Although, I have severe muscle pain in my legs, but I rather suffer from this!)

    All the best for you!
    Cheers,
    Andras
  9. Tibbiecow

    Tibbiecow New Member

    Hello Andras,
    Best to you getting diagnosed and getting medicated properly. If you do indeed have fibromyalgia I might suggest the guaifenesin protocol. Point your search engine to guaidoc, and also post the topic here, lots of us here have found relief this way.
    Anyway, I was thought a hypochondriac, with a few more legitimate health problems than the usual person, though, for the past 25 years until I figured out for myself that I have fibromyalgia. Quite a relief to know that this is not all in my head and all of these strange things about me are real an not unusual for someone with fibromyalgia! Now I am properly diagnosed and treated well by a rheumatologist and also a neurologist because I have migraines.
    My best advice to is, if you do have fibromyalgia, is to get a good rheumatologist to treat you. This is not in your head!
    Love,
    Tibbie
  10. sunnysideliving

    sunnysideliving New Member

    Hi All,

    First of all, Tibbie thanx for the information! I do appreciate your help.

    Unfortunately, I am back to the stage. Most of my muscle pain went away, but my mind covered with fog again. :(
    I am a bit sad about this. I rather suffer muscle pains with clean head, however it seems it is not my choice.

    Does anyone has the same experience? Having muscle pain clears one's head. :O


    "I will be diagnosed and feel better!"
    Cheers,
    Andras
  11. anngee59

    anngee59 New Member

    what a laughed, you have all these symptoms, so you know you have fms. the problem is to find a doctor that will take it serious, ya need to interview them. i just fired a rheumy because in attitude was disgusting about fms. so i going back to the first one i went to 8yrs ago who told me i had fms but there was no cure so now im hoping shes educated herself, her recepionist says she has fms patiences.
    as far as cfs/cmv/ebstein-barr - i came up with the anitbodie in my blood and i never had or got mono - its just a link - most people who have had mono have a chance of getting cfs. its also assoc with the herpes virus, but i never had that either.

    in short we have cfids cronic fatigue immune deficiancies syndrome or also auto immune dyfunction. go to cfids.com or cfids association of america
    and read all about it. when your immune system is depleted you are tired, confused, cant sleep, have sore thoats, swollen glands, earaches, low-grade fevers, night sweats,.
    and than comes fms, pain pain pain. our bodies are attacking themselves - cure no
    treatment - water theraphy, pain meds, mega doses of immune building vitamins. and maybe you will go into remission. i did for about 3 yrs. but guess what stress triggers it to come back so unless you can live in a box, it will come back. i also have had so much weight gain, it not funny, so now depression is here. the doctors have it all backwards they want to treat the depression first, well if we werent in so much pain we would not be depressed.

    i know i am bandstanding but i too am sick of all this, so on a more uplifting note GOOD LUCK we all need it here.
    [This Message was Edited on 04/09/2003]