need advice tonight...please

Discussion in 'Fibromyalgia Main Forum' started by Saul, Sep 29, 2008.

  1. Saul

    Saul New Member

    Hi everyone,

    A few weeks ago I posted on my severe cognitive dysfunction and brain fog issues. Thank you for all the replies!

    Here is my issue tonight...

    Very brief history: I became sick back in 1988. It was a sudden onset of symptoms (like overnight), primarily fatigue and cognitive issues. I was forced to drop out of college and was more or less bed ridden for 3 months. I gradually gained enough strength to return to school and graduate.

    Ever since, my symptoms have waxed and waned. I have never even been close to 100% but have managed to work full-time as a teacher and pass as "healthy" to most of my friends and family. I am the master of disguises as far as I'm concerned and can look/play the part when I need to. When I'm alone, I crash hard and rest as much as possible.

    However, over the last 3 years, and more specifically 3 months, my cognitive abilities have diminished to the point that I feel as though I have dementia. I have never had swollen glands, sweats, or any other symptoms associated with CFS. Fatigue and cognitive difficulties only.

    Like many of you, I have been to countless docs and even took a trip to the FFC in Philadelphia two years ago. I did their regime for over a year with no benefit. According to all tests performed over the years, there is nothing glaringly abnormal.

    This leads me to believe that it is all in my head/neck...literally. I have had 2 neck surgeries over the past 5 years and have a long standing history of neck problems from playing football in high school and college. Chiari Malformation has been ruled out.

    I am going to my 3rd neurologist tomorrow in many years and need some answers. I'm not sure how to approach this appointment and am wondering if anyone can offer me advice or may know of an ailment that might mimic CFS given what I have just explained. I am going to demand a SPECT scan to look at decreased cerebral blood flow as well as any other abnormalities that may be present in my brain. This is about the only test that I have not had over the years.

    Well, I'm surprised I could even put together this explanation given how my head feels right now. Hopefully some of this makes sense. Any suggestions or comments are greatly appreciated!

    God Bless
  2. ladybugmandy

    ladybugmandy Member

    hi saul. i also suffer from extreme cognitive impairment and it is the most distressing thing i can imagine. i am sorry you are going through this.

    i had a SPECT scan about 2 years ago but it was normal. i think there is a type of SPECT scans where they measure blood flow while you complete certain tasks. i think this is more often abnormal in CFS than the resting SPECT scans.

    may i ask which treatments they tried at the FCC?

    thank you
  3. Nanie46

    Nanie46 Moderator

    Hi Saul,

    I was wondering if you ever had delayed food allergy testing (sensitivities)? I am treated by Dr Dantini who uses antivirals and delayed food allergy testing followed by an elimination diet for FM and CFS.

    I have FM and I had the testing in 2007. 10 days into the food elimination I noticed dramatic improvement. One of the things I noticed is that I felt like I came out of the fog.

    He has an office website...4fibromyalgia dot com. I have posted alot of info on this in the past.

    Hope you gets some answers soon and get better.
  4. momblue

    momblue New Member

    Hello Saul. I have had fibro for just over 2 years now. Its my mind that has suffered more than my body. I do understand your problem. I have no advice to offer to you, just a kind thought and a quick prayer for you.
    Warm regards,
  5. pepper

    pepper New Member

    for dystonia? A friend of mine also suffers from severe CFIDS and FM and always put her back/neck pain down to the FM. An observant doctor sent her for testing and treatment for dystonia and her pain is incredibly better.

    She is having other things done by a doctor in the Berkshires including Mg IV's which also help. But she claims that the Botox injections she has regularly for dystonia in her neck are saving her from so much pain.

    Good luck tomorrow.

  6. luvdogs

    luvdogs New Member

    I once had an attack of cognitive dysfunction that was so severe I had to be hospitalized. I couldn't drive, I couldn't read, and I could barely talk. To this day, nobody knows what happened. My neuro thought I was on too many medicines, so she tried changing my medicines. I had had such severe insomnia that one of my docs had put me on 20 mgs. Ambien. She took me off the Ambien, and gave me Rozerem and Depakote instead. Then I couldn't sleep, period.

    Now I'm on 10 mgs Ambien, and I find that it helps to be on less Ambien. The other thing that helped, was that they checked my thyroid, and at that time, found it was low. The thyroid meds definitely helped. So you may want to get your thyroid checked.

    I gradually gradually got better, and now can drive again etc. The cognitive problems come and go. I still have a great deal of problems with word loss, word reversal, etc.