Still haven't been diagnosed, Going to give Mayo Clinic a try...

Discussion in 'Fibromyalgia Main Forum' started by Trevor1, Oct 6, 2005.

  1. Trevor1

    Trevor1 New Member

    Hello all,

    Im still dieing from whatever I have, still hoping it isn't CFS or FM. But chances are it is, since ive ruled out damn near everything. The frustration is unbelievable since im currently going to college and can't focus for anything. My brain fog is horrible, I feel detached from my body. I have a 24/7 out of body expierence going on. And I can't concentrate to save my life. My ankle joints hurt most of the time, and my fatiuge is terrible.

    Ive stumped all my original doctors so far, so my moms sister has arranged me an appt at the Mayo Clinic sometime next week hopefully. The nice thing about Mayo is they have specialized doctors and what not. So hopefully they can get me with one doctor and I can stay with that one doctor till we can get some sign of improvement.

    I had a few questions for those out there who have gone through bad depression and bad depression only, not accompanied by CFS/FM. Does the horrible fog come along with depression? Because if Anti-Deppressants can help in anyway id ask to get prescribed to them. Since ive got nothing helping me out for the time being. And ive had the symptoms for almost 4 months now :(...

    And another thing, has anyone given a Mayo Clinic a try? if so any improvement??

    Just wanted to update you guys on my progress, or lack there of. And ill keep you updated once I go to Mayo.

    Take care,
    Trevor
  2. spasco

    spasco New Member

    I would be very interested in what you find out. THey are supposed to be the best, or at least up there with John's Hopkins. You certainly hsould get some answers there. Please keep us posted.

    God bless! Stephanie
  3. rileyearl

    rileyearl New Member

    Dear Trevor,

    I did have bad depression long before I had clear symptoms of either FM or CFS.

    I thought I was dying, too. I had so many things wrong that I made a long list to take to the doctor because I knew I wouldn't remember any of them. Yes, you get foggy. It feels different from fm fog, though, to me anyway. With depression, it was more like my brain was paralyzed and just wouldn't work. All I wanted to do was sleep and tune out the world.

    It was more than 12 years ago now and I was going to school fulltime, too. Wish I could remember all the physical symptoms I had, but the main one was stomach problems. I had so much pain I was afraid it was an ulcer. But when I showed up with my list in hand, my dear doctor told me that, with the exception of my vision going downhill, everything on my list pointed to depression.

    She put me on Paxil, which made me sleepy all the time, but the depression lifted. It was so wonderful! After a few months, I thought I must be cured, so I stopped taking the Paxil. Guess what? The depression came roaring back worse than ever. When I got back on the Paxil, it no longer worked. So, I had to try others and one did work. I've decided that I will always be on antidepressants. I can't waste anymore time with bad depression.

    Another long post, but I hope it helps somehow.

    Take care!

    Francie
  4. orachel

    orachel New Member

    I'm so sorry to hear your "floaty" feeling is still with you! That is so darn disconcerting! LOL

    I think the opportunity to go to mayo clinic is incredible! I'd be absolutely thrilled to have world reknowned diagnosticians taking a look under my hood to see what the heck is wrong with me!

    I hadn't realized that you and I had been sick about the same length of time also...I'm still so flipped out about this whole thing. Please let me know how it goes...are you local to Mayo? I can't even think of where its located offhand. Is insurance covering extensive diagnostics like that?

    Thanks for the update, and I'll keep my fingers crossed for you. Please let me know how it goes! I'm broke, but I'd sell just about anything I own to figure out whats going on with my body...definitely worth the plane fare.

    Good luck!!!
    Rachel
  5. Windytalker

    Windytalker Member

    I went to the Mayo Clinic for a pain issue. They diagnosed me as having FM, then proceeded to send me to a shrink. No further help was offered...

    My pain issue turned out to be severe adhesions which was diagnosed only a few months later by a surgeon.

    I hope you have better luck!!!!
    [This Message was Edited on 10/06/2005]
  6. FM58

    FM58 New Member

    Hi Trevor,

    Mayo will be extremely thorough. However their philosophy on FMS & other chronic pain issues is to treat with a behavioral exercise program.

    An example - If you can do 10 leg lifts, then they start you with 3 leg lifts- So you are successful!! You do your exercise program 2-3x day. Your exercises are adjusted every 3 days or so. Supposedly within 6 weeks - you return to "normal functioning".

    No pain meds allowed either - all can be resolved with this program, haha.

    However, I do know people who have gone to Mayo & have been diagnosed with some unusual syndromes/diseases. They are the place to go for that, they work all together as a team, all different kinds of docs, great communication with each other. If you have an unusual condition, they will be able to pick it up, diagnose it, find a treatment plan for it and work with your local doctor to follow up on your care.

    Do you know how long you will be at Mayo? Usually most programs are only on the weekdays & you have to leave for the weekend. At Mayo, you typically see many different docs- all different specialties. That is the great thing about Mayo, they are all available and communicate well with each other. You will probably have one specific doc assigned as your main doc, or maybe a hospitalist (my memory is fuzzy on this one). Seeing so many different specialists in one stay allows looking at a patient from as many angles as possible.

    Trevor, wishing you the best of luck at your Mayo stay. I hope they are able to come up with something. Please keep us updated.

    Gentle Hugs,
    Patty
  7. lilaclover30

    lilaclover30 New Member

    I had years of depression and flu-like illness. After withdrawal from Nardil (horrid) i lost my ability to focus my eyes well. After an appointment with my eye dr. and with a specialist from Indianapolis and found a "mystery", i asked my PCP to send me to Mayos'. He wasn't too happy and sent me to another specialist just like I saw in Indy. Same answer. After a lot of money and a lot of time, I came home with diagnosis of "extreme anxiety". Great!

    I was put on Effexor which has helped. Also Trazadone for sleep. Marvelous. That was 3 yrs. ago.

    I was finally dx'd with FMS. No, I have no increase in my health. Sorry, it just goes on and on.

    I am going to a Pain Clinic this week as i have also developed Spinal Stenosis and Osteoarthritis. I do so hope I can find some relief.k

    my best to you and good luck. Things may have changed in those 3 years.

    Gentle Hugs

    Joan
  8. twerp

    twerp New Member

    and my experience may not be typical, but all they did for me at the Mayo Clinic in Scottsdale was do a sleep study. Said I was sleeping OK, and that was it.

    Hugs,
    Twerp
  9. elsa

    elsa New Member

    It's not my experience with the Mayo Clinic but my dear friend's. It's true that an entire team is assembled with the lead MD being in the suspected illness/injury specialty. The testing is extensive and the staff is incredible.

    The downside is a concurence to the above poster's experience where FM is concerned.

    My friend has access to the best possible medical care worldwide due to family and husband's connections. She had already been diagnosed with CFS/FM, ... Still had questions and wanted the best possible outcome.

    After testing, they luke warmly agreed with the FM diagnosis, but said she had a slight chiari formation and if they had surgery on it her FM symptoms would more then likely resolve themselves.

    Although her chiari formation wasn't anymore intrusive then the majority of adults walking around with the same thing she opted for the surgery.

    Her surgery went find, but her fibro symptoms have not resolved at all and at times seems worse. She has developed worsening of her headaches after the surgery, but they very well may ease as more time passes.

    Since she still suffers from her fibro, the team at Mayo wanted to start her on that exercise program mention above. They took it a step further saying that she had been in pain for so long that her behavior needed to be adjusted to life without pain.

    Before she totally blew her stack she asked what about her documented sleep disorder (caused by fibro), response was that as she learned not to think like someone in pain her sleep would improve and that in the mean time she could take some tylenol PM.

    HA HA ... this is the part where I wish I was in the room. She is born and bred Texas ... long blonde hair and speaks her mind. In her very Texas Belle accent she calmly turned to her husband and told him to go get her gun because she was going to shoot these arrogent sob's.

    She has since gone back to a neuro. in CA that is treating her similiarly to others here.

    Point here is that the Mayo Clinic is in the top tier in diagnosis but has little respect for FM/CFS.

    If it is comprehensive testing you are looking for I suggest the FFC centers. I am not a patient there, but a center that takes 32 to 40 vials of blood and has tests done more intricate and extensive then the norm is going to get some answers ... including whether lyme and mycoplasms are present.

    It would be some answers at least. I know many object to the "no insurance accepted" policy, but that isn't quite correct. The office visit is done like the days of old or like car insurance where you file on your own.

    By not filing themselves they are free to diagnose and treat as they see fit and not have to toe any "insurance line". I actually like that.

    Apparent by our member's here experience, they on average have their insurance cover 60%-80% of office visits. The lab work is filed by the onsite lab.

    Good luck to you. I hope you get answers soon. It seemed to me that I started feeling better after learning what was wrong and that it wasn't going to kill me. Let us know how things are going.

    Elsa
  10. Trevor1

    Trevor1 New Member

    Hello all,

    First off thanks for all the comments and mayo experiences. Very appreciated, I had my appointment on Monday 10/10. And it went well, I felt good about it. My doctor is very kind and very thourough and went over many scenarious with me of what could be causing my symptoms. And since I had ruled out so many she contacted the infectious specialist at Mayo. With help from the infectioius specialist, we decided to do a Hepatitis blood test just to rule it out. And finally I may be getting prescribed something, even though its anti-depressants. Its something to help me get some sleep, since my insomnia has been awful. All my symptoms are still hanging out and killing me, but the good thing about Mayo is they are not letting me go till they see some improvement and thats comforting to hear from them. Also they have so many different doctors there, I can get alot of opinions.

    Anyway, I haven't gotten the Hepatitis results back, I also had a chest Xray, because ive been having sharp chest pains every now and then. So once I get these results back, I will update you guys. Im sure the xray will be fine and the hepatitis will be negative. And we will be back to running more tests, but im always up for ruling out stuff. And looking forward to getting some depressants to help me get some solid sleep. Ive been taking over the counter sleep aids quite often, and they leave you feeling dried out.

    Well thanks again for your responses, they mean alot. And I will get back to you guys on further Mayo Appts.

    Take Care,
    Trevor
  11. elsa

    elsa New Member

    Thanks for getting back and letting us know how things are going with you. How nice it is to feel like you'll be getting some answers soon and ,in the mean time, getting some relief for your sleep problems.

    I'll keep positive thoughts for you. Looking forward to hearing from you in the future.

    Take care,

    Elsa
  12. pirtpain

    pirtpain New Member

    Trevor, to the best of my knowledge, the Mayo Clinic is known for the in depth research of whatever health problems come there way. Fibromyalgia can't be diagnosed by the conventional methods, i.e. blood work, xrays etc. Maybe there testing will find something that your other Drs. have not found. I hope that you have good medical insurance
    because it will be very expense. Have you seen a rheumatologist? Depression is a major part of FM and it sounds as though you need to be on anti depressants but that is only my opinion. I had to see a phychiatrist for anti-depressants. I hope all goes well for you. It sounds like you are carrying a busy load and it may be making your symptoms worse. Keep us posted! PIRT



  13. Trevor1

    Trevor1 New Member

    Hello everyone,

    Sorry it took me a while to update ive been busssy. My little brother has been through hell and back. He broke his leg in a soccer game close to a month ago and ended up getting compartment syndrome and had to spend close to 3 weeks in the hospital and go through 8 surgeries. But hes home now and ive been spending alot of time taking care of him, and trying to do college with the fog. So ive been going insane lately.

    Anyway on to my problems hah. Doc at Mayo clinic finally prescribed me some depressants. She started me on 50mg of Trazodone. Ive been taking it since monday, and this coming monday Im going to get bigger dosage. 100mg or 150mg I think. I haven't noticed a difference, my fog is still horrbile and the fatiuge is still horrible. I was wondering if anyone had taken Trazodone before, because I wake up with horrible headaches and a stuffy nose, every morning. I know its because of the Trazodone because it started when I started taking it. Im going to explain that one to my doctor see what she has to say.

    But thats pretty much it, she thinks I need to sleep better so hopefully a bigger dosage of Trazodone overtime will help me do that. Id give anything to feel "like im here" as weird as that sounds. Almost starting to think its in my head its been going on for almost 4 months. I feel like im going more and more insane as the days pass.

    But just wanted to update you guys. My little brother is home now and doing good, getting around on crutches and he should be fine. Took a good amount of time away from my problems but I had to do, what i had to do. Lets just say my family's medical bill is outrageous, but my mom is very helpful in figuring out what I have so everything should work out.

    Take care,
    Trevor
  14. elsa

    elsa New Member



    I'm sorry to hear about your brother, but glad he is finally on the mend. How scary to have a broken bone turn into life threatening situation ...

    I tried trazadone a long time ago for sleep difficulties. I didn't do well on it. At first I did sleep ... like a rock, but it totally ruined how I was able to function the following day.

    In all honestly most AD's effected me that way especially the older tricyclic anti-depressants which trazadone is.

    I know funds have to be real tight with your family's medical events, but if possible, try to have a sleep study done. After mine was done, we learned that certain treatments/meds actually made my sleep disorder worse.

    Have you heard from your 10/10 Mayo Clinic appointment? I'm wondering how your hepatitis blood tests came out. Let us know if you can.

    I still echo the thought of a work up at FFC .... if the Mayo comes up empty handed.

    Thank's for checking in with us. You have so much on your plate and I'll keep all positive thoughts for you and your family.

    Take care,

    Elsa
  15. redmag1

    redmag1 New Member

    Good luck Trevor but I have been to the Mayo Clinc for this disease and they are not the best. Try the Fibro and Cronic Fatique centers in Detroit MI. You will have better luck there.
  16. Trevor1

    Trevor1 New Member

    Cant believe I forgot to mention the tests. All my tests came back negative along with the chest xray. So no chest problems and no Hepatitis :). I almost wanted to hear I had hepatitis you know just to get diagnosed and treated haha. How bad does that sound. Thanks for your posts guys ill keep you updated.

    Take care,
    Trevor
  17. rileyearl

    rileyearl New Member

    Did they test you for Epstein-Barr Virus?

    I tried trazodone once, but it made me tired and I kept listing so far over that I went down a couple of times.

    The antidepressants that work for me are Cymbalta 60mg and Wellbutrin 300XR.

    Take care!

    Francie
  18. bpmwriter

    bpmwriter New Member


    if the trazodone continues to give you problems, ask the doc about an ssri like lexapro. it has the least troublesome side effects profile of the anti-depressants and a small dose (5-10mg) can work wonders helping you sleep. i'm also a huge advocate of acupuncture. if you have access to an acupuncturist at the mayo clinic, you might try a few sessions to see if it helps. the best i've felt was on a low dose of lexapro and acupuncture 2x a week.

    hang in there,
    eddie
  19. beth0818

    beth0818 New Member

    i was diagnosed with depressiona t age 12. i have been battling what i now know is scs since i was in college (10 years ago). ti feel like my brain as been fogged for so long that i don't know if it is the drepressionnor the cfs. they seem to go hand in hand now. when my cfs gets worse, me mppd swings get worse and vice versa.
  20. Trevor1

    Trevor1 New Member

    I should have given you all my full information, I have another thread on here. Anyway I have been tested for everything in the book. Lyme, WestNile, Hepatits, etc. Ive had them all. I tested positive for epstien barr virus a while ago. Thats mainly what my Mayo doctor is trying to "cure" even thought I gurantee its not EBV causing my symptoms. But if it is its been killing me for 4 months...So i dont think EBV is the culprit. The trazodone has been helping me sleep, so ill probably stick with it. The side effects are tollerable, but I will talk to doc about another depressant. I know how you feel about the fog just constanlty being there. Ive been fogged for 4 months now and it still weirds me out everyday. I constanltly feel like im not here, and I wonder if ill ever feel like im here again =/ very strange.

    Anyway ive been tested for everything possible, hence why im at the Mayo clinic because I still have yet to be diagnosed. My doc is hoping the trazodone will help me get lots more deep sleep, and maybe I will "overcome" whatever I have. Its hard to believe that just sleep is going to help, but you never know. Anyway ill keep you guys updated I should be getting a higher dosage of Trazodone tommorow, so maybe ill start seeing some serious changes.

    Thanks again for your posts and support.

    Take care,
    Trevor