I finally saw a Dr. that believes

Discussion in 'Fibromyalgia Main Forum' started by sapphire, Feb 12, 2003.

  1. sapphire

    sapphire New Member

    He actually believes in CFS and doesn't think it's all depression. We had to drive 8 hours to see him but it was worth it.
    He's actually a Cardiologist that specializes in POTS and other forms of dysautonomia. I was so impressed with him. He spent about 2 hours with me. Could have had something to do with me passing out when he stood me up to check my BP.LOL I'm just glad my hubby was there, he saw it coming and they both caught me. I was so embarrassed. I should be getting used to it by now.LOL That's 5 times in the last 9 days.
    Anyway, he wants me to see Dr. Heffez in Chicago for my stenosis. He says the POTS probably won't get better unless I have the surgery which he said is risky. I don't know what he means by that. I was too sick to ask questions at the time. The POTS is secondary to the stenosis.
    He also seemed to think that the CFS could be as a result of the stenosis. I don't know what to think about this. He's not saying that is the case with everyone but that's what he thinks in my case.
    I went to a Neurosurgeon in Louisville and he just made me worse. Sent me to PT which made me worse and then put me on zanaflex which can affect blood pressure. I got worse after I started taking it. I just didn't connect it. He knew I had POTS but maybe he didn't know about the side effect.
    Anyway, I just wanted yall to know that I finally had a good Dr. experience. I've sure had my share of bad ones, like I'm sure most of you have.
    Sorry this is so long. I guess I'm just so excited to have a Dr actually listen to me.

  2. sofy

    sofy New Member

    When I first started looking on the net for info. I read several accounts of people who had that surgery and were completely cured because their problem was the narrowing which the surgery took care of. So while scary this is also very hopeful. No one wants surgery but we all want a reason for what is wrong with us. I'm soooooooo glad you have found competent medical help.
  3. DC77OI

    DC77OI New Member

    Hi. I have NMH, OI and postural orthostatic tachycardia. Have you read the paper that Dr. DAvid S. Bell wrote on it? It's at the pediatric network.org site. I'd highly recommend yo u reading that. It explains everything to a T. I used to be completely bedbound until I found a dr who figured out the problem (llike you!)

    Most doctors are unaware this is what causes cognitive difficulties, fatige, etc.. The root of a lot of the problems. i'm fallin asleep as it's 449AM! so i gotta get some sleep. my email address is kbkswgdc@yahoo I hope you are OK sweetie !
  4. DC77OI

    DC77OI New Member

    I hope you aren't talking about Chiari Malformations?! No, no no! Those are only for people who definitely have this, which is in less than 1% of CFS patients. I know of around 7 people who had it through DR. Milhorat and 2 other doctors. Some were unnecessary. All of them have had under 5 repair surgeries. They're all under 25. That's an ONLY in a life threatening situation. The people I know are in wheelchairs, not in school, & have not really had any sort of functioning life.
  5. Carlacat

    Carlacat New Member

    and I have POTS also. It makes ya wonder if this is a spin off from the FM. I had FM first then a yr later DX with Pots.
  6. sapphire

    sapphire New Member

    No, it's not good about the POTS but it sure does explain alot of things. I just hope I get to feeling better. Today is a rough day. I'm not able to be up but about 2 minutes at a time. I don't know if I could laugh all the way to the floor, today. Maybe tomorrow I'll be able to.LOL
    Thank you both for your concern. I hope you are having a good day today.

  7. sapphire

    sapphire New Member

    Hi there,
    Thanks for the article. I read it and it does explain alot. It explains why my BP was 102/90 and the nurse kept checking it saying that was weird. This was at Dr. Grubb's office so I would think they see that alot but evidently not. That also explains why I passed out in the Dr's. office. I wasn't getting enough blood to my brain.
    It also explains the cognitive problems, too. Dr. Grubb saw them right off. I didn't even mention them. I had been trying to convince my Neurologist that I had problems but he just blew me off like so many do.
    As for the surgery, it isn't for chiari. I don't have that. I thought I did because the symptoms are so similar. But I understand that stenosis can produce almost identical symptoms.
    I have scoliosis, which is slight but enough to have caused the stenosis. So I guess the spinal fluid is partially blocked which has caused the POTS and maybe the CFS.
    At this point, surgery is my only hope, I guess. I definitely cannot live like this. As Dr. Grubb put it, "This ain't no life". He's absolutely right.
    I appreciate your concern and help. I saved the article for future reference. I'm sorry you have so many orthastatic problems. They are very difficult to live with.

  8. sapphire

    sapphire New Member

    How are you doing with the POTS? Have you improved any?
    I was going to go to Cleveland Clinic but I heard so much about Dr. Grubb. He was excellent and seems to know alot about these conditions.
    His receptionist jokingly told me to stay off the internet. They are being bombarded with new patients. That's why it takes 6 months to get an appointment.
    I don't know if you have been reading the dysautonomia board or not but someone was cancelling an appt. for Mar. 20th so I called to try to get it. They said I had it but then called right back and said 2 people had called at the same time. Fortunately, they had a cancellation for Tuesday. Of course, I jumped on it. I was getting scared because I was passing out so much. I didn't know what to think. At least now, when it happens, I don't worry about it.
    I hope you are doing OK. This is such a difficult illness and I feel for anyone that has it.
    I also want to thank you for answering my post when I first got sick with this. Of course, I had no idea what it was till you replied to my post so I am very greatful to you for that. You were the only one that knew what it was. So
    thanks again.

    Take care,