results are in

    • Anonymous
      August 19, 2008 at 1:17 am

      Hi everyone,
      Looks like I have missed quite a bit lately. I have been bouncing around Dr. offices all summer. So I thought I would give a quick update. As I posted earlier this summer I was having vision impairment starting in April that has not improved so after seeing my Opthamologist who is one of the best in town, he sent me to an Optho/Neuro Doctor who thought I had an embolism or brain tumor. After MRIs, 16 tubes of blood drawn and several eye exams and vison tests, the results indicate that I am slowly losing vision due to hypoxia caused by the sleep apnea. Bottom line, if I don’t get this apnea under control I will lose my vision completely. Needless to say, while I am thrilled not to have a brain tumor or blood clot, I am so over all of this health stuff. Oh, I also have RLS pretty bad so he wants to put me back on Neurontin which was adding to my fatigue. I tried CPAP for several months with little success so on Friday I am picking up my new mouth appliance that was made to supposedly help open the constricted airway. I saw my primary Doc today who agrees with the Neurontin and wants me to get another sleep study after getting the mouth appliance. 😮 O.K. so the good news besides the no tumor or clot or MS is that none of this is CIDP related. Though I have to wonder if there isn’t some connection between the Apnea and CIDP as I know many of us have both. Any way, I guess this is my job now. Taking care of myself and not feeling guilty for being on disability. By the way, I sold all of my Massage equipment which was a HUGE step for me in this process of losing my old self to the CIDP. But I am living in the now and enjoying what I can. Thanks for listening. I do hope everyone takes good care of themselves and keeps others well being in mind as well.
      All my best,

    • Anonymous
      August 19, 2008 at 1:36 am

      Hi Linda, I’m up a little late tonight too and just wanted to write. We do lose our old lives, to a great extent, to cidp. But you have the best attitude! You are living in the now and enjoying what you can….we were given lemons and we made lemonade..:) Keep up the great attitude. You really got bad news, good news, bad news slung all at you. My girlfriend has macular degeneration and losed most of her vision, but the association for the blind has helped her with the two canes, illuminators, key chains that tell the time outloud, and there is a computer that you can buy special. All through this, she has maintained the same attitude as you-she lives in the now and enjoys what she can everyday.
      All my best wishes to you.
      Take good care.

    • Anonymous
      August 19, 2008 at 7:13 am

      Linda, glad to see you back ! Geez, you’ve had quite the summer. Glad you got some answers and I think it’s awesome you have such a good attitude.

      I never realized that sleep apnea could have so many “side effects”. I sure hope you get things straightened out with that.

      Thank God there was no brain tumor !

      You’re in my thoughts,

    • Anonymous
      August 19, 2008 at 7:56 am

      I have seen how sleep apnea can cause problems and make a person suffer.
      My brother had it and went through the sleep study. He slept with oxygen at night as he stopped breathing so many times through the night Dr. told him he may stop breathing and not start again.
      He had nickel size scar tissue removed from his nasal passage. A few weeks later he had a tonsillectomy, the uvula removed and the soft palate scraped to reduce the size of it. This surgery made his air passage larger with no obstructions. He is now able to sleep without oxygen, does not stop breathing while asleep and his energy level has increased as he gets the sleep and rest he needs.
      All of this sounds drastic and hope you don’t need it but just wanted to let you know that it did work for my brother.
      Take care and good luck

    • Anonymous
      August 19, 2008 at 8:30 am

      Linda, Wow you have had a busy summer. I’m glad to hear they finally found a cause for you now its just getting it under control. You sound like you are doing well with all this. Keep us posted as you are in my thoughts and prayers.

    • Anonymous
      August 19, 2008 at 9:51 am

      Linda, I am so glad you were able to get some answers. Sometimes the not knowing is worse than the knowing. Once we know, we can deal! Keep up your positive attitude. You will/can conquer anything. Best always.

    • Anonymous
      August 19, 2008 at 10:21 am

      Hi! I am Cathy C. & new to the forum. I am sorry you have had such a rough summer. But sounds like things are on th up side now that you know what you are dealing with. I went for a routine eye exam last week & was diag. with early macular degeneration. Sometimes I think what else can I have go array. But you said it, we have to live in the now. Great attitude. I wish you the best

    • Anonymous
      August 19, 2008 at 6:16 pm

      Emma, Stacey, Shirley, Jan, Janet and Cathy,
      Thank you for your responses. Cathy, I am so sorry to hear of your diagnosis. I hope you are getting good care. Stacey, it sounds like you have been having a time of it yourself. You are always in my thoughts. Jan, I have been wondering about you too. Are you healing and strong? Let me know. Janet, Emma and Shirley, I thank you again and Shirley, as far as surgery goes, no one wants to put me through the risk it poses with the CIDP so hopefully a combination of CPAP and mouth appliance will be the answer. I always thought that there was an unspoken rule of one chronic disease per life time, but as it turns out there is no such thing. So many of us get to juggle several at a time. I must say that not having to work while dealing with all of this makes everything so much easier and rest assured this summer is much better than last. I can at least enjoy more good days than bad and am really plugging into my creative side so when I can I am drawing, sewing, doing what I can with my hands when they allow. I have a home, food, friends, love and health care coverage so I feel pretty rich. Thanks to all of you for your support and input. I think of you so often and wish everyone peace and clarity.
      All my best, and remember the KISS principle, Keep It Simple Silly

    • Anonymous
      August 19, 2008 at 7:51 pm

      Linda-about that unspoken rule-I too have learned that we can be given more than one chronic illness, but I truly believe God sent me new really special friends to help me endure.
      So many of you have become so close and yet we have never met, and we give each other support through words-encourage and listen and everything God intended for us to be.
      I pray Linda that the new mouth appliance will work better for you–you better get all that art work and crafty stuff ready to roll, give you a couple good night’s sleep, and think how creative your mind will get.:)

    • Anonymous
      August 19, 2008 at 7:56 pm

      Linda, I’m curious about your statement that you tried CPAP for several months with little success. I also have sleep apnea and I’ve been sleeping with a CPAP for about 5 years now. It has made a huge difference for me. Would you mind elaborating on your statement and telling us why you had little success with the CPAP?

    • Anonymous
      August 19, 2008 at 10:06 pm

      [FONT=Georgia]I just wanted to add something here in regards to the CPAP machine, not everyone can benefit from them. My wife had one & everytime she tried to put the thing on she panicked, & the thing literally took her breath away. Regardless some people can not use one of them, I don’t want to hear a sermon or whatever on this I know what happened with my wife. Not every person is the same, what works for one person may not work for the next.[/FONT]

    • Anonymous
      August 20, 2008 at 2:58 am

      Hi Linda! I am a Linda too! Your summer sounds like mine. But I am glad that your finally are on the road now to recovery. Good luck and I wish you well!

    • Anonymous
      August 25, 2008 at 12:23 pm

      Hello all,
      In response to the question of why cpap didn’t work for me, it was a combination of the mask(s) (I tried several) not staying in place, not being able to sleep comfortably on my back and simply not being able to sleep because I felt like someone was smothering me so I would end up getting less rest than before. I know there are a milliion differant masks and apparatuses but (a. my insurance would only cover one per year and (b. I tried for for about 4 months with little success. The new mouth appliance is giving me about 3-4 hours of uninterrupted sleep and I will be getting a sleep study done in 3 months to see if its giving me enough oxygenation. I may have to return to cpap if needed and will if I have to but if this thing gives me comparable results then I will be happy.

    • Anonymous
      August 25, 2008 at 1:34 pm

      I am a little confused. WHY do yall need c-pap to sleep? Did the GBS ruin your resp. system or what? I give you cuddos for wearing that thing at night because I am so clostrophobic that would prob. kill me! 😮
      Good luck & take care.

    • Anonymous
      August 25, 2008 at 6:40 pm

      For I too have the sleep apnea but also suffer insomnia. I like sleeping on my stomach and hope the mask they give me isn’t one that looks like an airplane mask. My father had one of those and I tried it out and could not tolerate that mask. I have CIDP too but undiagnosed as to what the cause is. But suffer dearly with sleep problems. And since you mentioned CIDP caused by Sleep Apnea. hmm! I have never heard of this before but would like to look into it further. That is something for me to check out since I have both problems and my body is going nuts. Very interesting hearing this.

    • Anonymous
      August 29, 2008 at 12:34 pm

      I just want to clarify in case I misspoke. I didn’t mean to say that CIDP caused the sleep apnea. But the CIDP which can affect the nerves that conrtol respiration can exacerbate the Sleep apnea. As we all know, this chronic autonomic stuff starts becomeing the “chicken or egg” riddle. One never really knows which came first. All I know for me is I have among other challanges, CIDP and sleep apnea whos treatments can be contraindicated. All my best to everyone.

    • Anonymous
      August 29, 2008 at 6:45 pm

      Hi LCala! I sure hope that you get much bette sleep soon. This stuff with CIDP I think can cause our nerve do so many things. Even many sleepless nights. Good luck L Cala! I wish you my best!

    • Anonymous
      August 30, 2008 at 7:14 am

      Hey Linda,
      Glad to see you are back, I’ve missed you! Sorry to hear your summer was a bummer. I know how disappointed you must have been to have to sell your equipment – hang in there, maybe something good will come of it in some way you aren’t expecting.

      I’m also sorry to hear about the sleep apnea and you losing your vision. That is a very frightening thing! I am fairly certain my husband has sleep apnea too and since we think it might be contributing to his current problems he is scheduled for a sleep study next week. Sadly, I’m thinking I might need to get one too as I’ve had trouble getting enough oxygen while I’m sleeping. I know I shouldn’t but I’m going to put it off for a few more weeks until my husband is better, then we will tackle my sleep problems.

      So glad you are back Linda, take care of yourself!


    • Anonymous
      September 3, 2008 at 11:08 pm

      Julie and Linda-Just got off the phone with one of my best friends that uses CPAP for sleep apnea. I wanted to make sure I had the right info before I wrote anything. Suzie tried all the sizes of masks and she has the clostrophobic issues and the therapist changed her over to the nasal prongs that just go into her nose and that has worked so much better for her and she is getting 6+ hours sleep. Just input-hope it helps.