Been so sick! This stuff is nasty!

    • Anonymous
      August 9, 2008 at 7:37 pm

      I went to the eye doctors on Thursday and had my eyes dilated. After I got home my body became all numb and tingly and it’s driving me nuts. Last night I slept pretty good but woke up really not wanting to get up. I feel so sleepy. Strange but after the doctor placed that stuff in my eyes it was like this CIDP stuff reacted to it causing more numbness and tingling.
      My husband and I decided to take a quick dip in our cheapy pool and after I got out, my legs and body felt like I was going to collaspe. And I was only in the pool for 15 minutes.
      Neruologist called on Friday and they are going to schedule me for Duke instead of doing a nerve biopsy in my town. 🙁 I was hoping the biopsy was going to have the answers without me having to travel to Duke. 3 hours away!
      Just don’t know when just yet! I hope they take me in soon. I have heard they have a 6 month waiting list. If I wait that long, no telling what I will be like then. I’m getting worse each day and seeing it and don’t know how much longer I can take.
      This stuff is nasty. If it effected my eyes like this, I wonder what a tooth being pulled will do! And I need one pulled but am scared chicken now! So it’s being a bad weekend here and I hope tomorrow is better!

    • Anonymous
      August 9, 2008 at 10:54 pm

      I am so sorry you are having such a bad time since the eye drops. You might want to ask the eye Dr. if he used a different kind of drops than on previous visits. Inform him that they adversely affected you and ask them to put that into your records. What I wanted mostly to say was that I was sent to Duke several years ago, and it was NOT six months to get the appointment. I am sure it was not more than a month or six weeks. I will pray that you get a quick appointment and that they find the cause of very adverse reaction.
      Mary Ann

    • August 9, 2008 at 11:07 pm

      Hope you feel better tommorrow Linda!!!
      Dawn Kevies mom

    • Anonymous
      August 10, 2008 at 12:13 am

      I am up again at mid-night! What a bummer!:mad: Well, I plan on asking my doctor if he will write me an RX for a hospital bed. This couch in my den is really not a good place to sleep everynight.
      I did ask about a waiting list and they go by the most severe cases first. The bad thing is my neurologist was supposed to do this 3 weeks ago and has not done it yet. He’s taking his time calling me in and I don’t know why! So I have already waited 3 weeks. Hopefully it will be this week of getting me in. And I pray I don’t have a 6 month wait. Probably 2 months but hopefully much sooner.
      I think they go by the case history and the persons health at the time they see them. It took my mother 3 months to get into Chapel Hill. So I will probably be going on the same time frame as her. Maybe I will get lucky and get seen ASAP!
      I have a Colonoscopy on the 20th and see my regular doctor on the 26th and then the gas doctor on the 28 and my neurologist has me seeing him again in September 23.
      Tonight my right leg is drawing in causing my big toe to pop up and then the bad nasty cramp comes in. Ouchie! My feet feel like I am standing on hot coals and burn like fire. I call it torture night! Going to lay on sofa and turn on Tv and maybe if I am lucky I will fall asleep.
      I was told that Duke was pretty darn good and sure hope so. I don’t know what I will do if they can’t figure me out! Already depressed and know it will make that depression worse. Think I will go online shopping for a while.

    • Anonymous
      August 10, 2008 at 2:45 am


      Who are you going to see at Duke?

      Send me private if you want to.

      I see one there.

      Dick S

    • Anonymous
      August 10, 2008 at 5:40 am

      I hope that life starts getting easier today for you, Linda. Do you think the sensitivity after swimming was due to the temperature changes, maybe? It is hard on a lot of us to be hot or to be cold.
      The interpretation of nerve biopsies by the pathologist is the hardest part and I have been told that lots of places do not do this as well because they do not have as much experience. I was told that if ever a nerve biopsy was done to make sure to go to the most experienced place you can–because there are some challenges to do them that does not lead to longer term side effects at the biopsy site, but mostly because you want experienced pathologists looking at the slide so that the best information possible can be extracted from the biopsy. I am glad you are going to go to Duke for the biopsy–it may save time in the long run.
      WithHope for a cure of these diseases

    • Anonymous
      August 10, 2008 at 7:10 am

      Hi Dick S! Not really sure whom the doctor will be at Duke. They have not gotten me scheduled yet. But my Neuro did say that I was going to the MDA/ALS Clinic there. And will be seen by a specialist that deals with rare diseases. I hope this specialist is good. That is my biggest fear! Getting a non listening doctor. I have had motor nerve damage and sensory nerve damage and can tell when a motor nerve gets attacked. Right not my left leg nerve is acting up bad. The Sciatic Nerve feels like it’s inflammed and causing bad weakness. The right leg is also trying to do the same thing.This disease whatever it is stinks! Really stinks! This morning I had to use my walker and unless this improves it looks like I will see the walker a while. I am on prednisone but only 10 mgs. It’s too low a dose and not working good at all. So this stuff is progressing at a rapid pace. I may have to get worse before I get better. That is what this is beginning to look like!

    • Anonymous
      August 11, 2008 at 7:56 am

      I get exhausted after only a few minutes in the pool – I need a crane to get me back out again. As for the eye drops I had that problem too, I’m not sure if it’s the same reason but my eyes are extremely light sensitive – dialiting them makes it worse… It was a very bright day so I was miserable, squinting, tensed up trying to hide from the sun, the doctor put my eyes through an hour of torturous tests, followed by another long ride in the searing sunlight – by the time I got home I was exhausted from the tension of the visit and ride home. Little things make a difference – the tension of squinting etc. pressed on the nerves, made that area numb etc. eventually the muscles worse themselves out and the pressure released the nerves… things got better. The car ride can do that to me too – its different when you are driving and can anticipate things, when you are a passenger you have to spend more energy attempting to remain in position, correcting for turns etc. that you may not anticipate, thus you get more tired.

      Please make sure your hubby is around when you get in the pool, it’s hard to tell when you are actually in the pool how tired you are until you try to get out and gravity takes ahold of you. 😮