Lips on fire, nose on fire and feels weird

    • Anonymous
      August 30, 2008 at 7:27 pm

      Geeze! What else am I going to experience here? Just when I think everything is going to be halfway normal, my body today has been going haywire again! My lips are on fire and my nose feels dead! No sun burn either. Just out of the blue started burning like my hands and feet have been. Any of you with CIDP get this?
      You know? I’m begining to wonder if I had maybe a mild attack of GBS in June and it just has not healed yet taking months to heal or get better.
      And then I had that spine surgery to suddenly get extremely ill. Beginning to wonder if my surgeon messed me up or if I developed a problem with that surgery that has not been checked out properly. But something is wrong!
      This crap is driving me nuts nuts nuts! Those with GBS that have that horrible nerve pain. What does it feel like? Just curious!
      Not going to be posting much today because I feel something aweful! I hope I feel better tomorrow.
      Why would my lips and nose be on fire like my hands and feet? This stuff is nasty! Totally nasty!
      I’ll take my systemic lupus anyday if I could get rid of this nasty aggrivating irritating painful nerve damage mess! Arrf! 😡
      Well maybe tomorrow will be a better day! I might go jump in a cold bath tub of water and see if that takes the burning away. Probably not, but if it did, I’d be sitting in a tub getting all pruny! 😀
      Well! I hope we all do okay today! Me! Not a good one! Hugs

    • Anonymous
      August 30, 2008 at 9:43 pm

      hi linda,

      Hopin this calms down for ya. Give that canning a break.
      Sounds like you got too busy workin when you got the boost
      Of energy. TimR

    • Anonymous
      August 30, 2008 at 10:34 pm

      Hey Linda,

      TAKE A BREAK…I think your body is talking to sound just like me. everytime i get a boost of energy i way way way over do it.

      So, slow down and relax for a couple of days.

    • Anonymous
      August 31, 2008 at 2:52 am

      Actually since Monday I have been resting. At least trying to. Did my canning of nine jars on Monday and was done. The rest of the week I have been taking it easy and not pushing myself at all. Even been trying to get as much sleep as I can. Here I am up at 2 in the morning and on fire again. All summer long I have been doing research of my symptoms and looked up just about every rare disorder there is that I could find online. Charcot Marie Tooth, ALS, MS. CIDP, Lupus complicatations. And have been looking up lab results online trying to figure out the results or what it could be indicating.
      My labs are indicating tissue damage going on. I agree with that one! I don’t like what I see in my labs though. Decreased Immunoglobulin IGA Serum with a high LDH. High CK! I have found one disease that can cause CIDP and have these same type patterns and that would be Amyloidosis.
      Some Lupus patients can go into Amyloidosis. That disease can attack the nervous system and many other parts of the body and can make you sick as a dog. No cure for it either. Thyroid nodule that has gone into cancer can also mimic the same pattern. But also Amyloidosis can attack the thyroid. Either way, I need treatment something aweful!
      If I am not better by Monday! I’m giving myself til Monday. Most hospitals because of Labor Day weekend are short staffed. Meaning you would get admitted but will lay there until Monday anyway because of the staff! On call doctors are working instead of the other doctors that would normally be called in.
      Like Tim said in a previous posting. Going in on Christmas is a bad idea! Labor Day weekend is a holiday too! Since Duke is taking it’s time getting me in and have not even scheduled me yet. I may just have to get my husband to go ahead and take me to the ER there. Certainly not going to the ER’s in my area. They will just send me home like they have all summer and I am getting fed up with being sent home. Then later pick up my records there and see labs that are not right. And notes the doctor has put down. Saying Neuropathy and Palpatations.
      I really need to get that spinal done! That is a must! Called my neurologist this week after talking to my regular doctor and could only get the answering machine. The nurse listens to the calls and she will call you 2 weeks later. I’m fed up with these doctor’s in my town.
      Don’t get me wrong! They do save lives and have a degree. But if you have something rare. They don’t know how to handle it! The doctor’s in my area just don’t know what to do! Duke is going to be the only option now. I’m not wasting my money anymore going to these other hospitals in my area.
      And then I wonder if Duke is going to be any better! It is a research hospital but just wonder how well they really are at diagnosing CIDP or other rare diseases that cause CIDP.
      And then I wonder how slow they are at diagnosing. I sure hope I’m not going to have to live like this for 2 or 3 years getting worse or critical and no treatment options. I think that would do me in! Well, I better try and get myself some sleep. Maybe I will get lucky and land a few more hours of zzzzz. Took another sleeper and hope it helps! Hugs

    • Anonymous
      August 31, 2008 at 4:33 am

      Hi Linda

      I have CIDP and also have the burning feet, hands and face – it affects my eyes as well. My feet always burn, my hands and face generally when I have been overdoing things – which is quite often 🙂


    • Anonymous
      August 31, 2008 at 7:56 am

      Hi Kazza! With CIDP though, don’t you normally get placed on IVIG’s or Plasmapherisis if the person is in bad shape and continuing to get worse. If something is progressing the normal protocol I know with certain forms of Lupus would be IVIG’s or Pulse Steroids.
      When I was living in PA, I saw Pulse Steroids quite a bit. But now I am not seeing that where I live now. My doctors in PA knew my pattern. These doctors where I live now don’t know my pattern and are just not treating me correctly.
      I think Duke is going to be my best bet as far as getting in. But they may end up seeing me in the ER instead. I’m not waiting 6 months to be in limbo here! If I do I may not make it through this! If it is Lupus, it could be fatal. So can the other two diseases I mentioned. Both can be fatal if not treated quickly. Still feeling icky this morning too and today is my husbands birthday. Was kind of hoping to take him out for dinner but have a feeling, I may have to cook his favorite meal instead. Bummer! Total bummer! Praying I get some strength soon and do get to take him out!

    • Anonymous
      August 31, 2008 at 10:49 am

      Hi again Linda,

      This is absolutely aweful. You should not have to be going through this. Your plan is sound. Wait Til Monday. If you can’t get things rolling, the ER at Duke will pobably acess the severity anyway and hopefully deem you serious and take you in immediately.

      I know you hate to fly but did you call Karen at HUP with Dr. Brown, He may be able to at least make a call to a colleague at Duke of something if not get you UP Here at HUP where he knows YOU. I know its far but. Let me know if I can help.

      All the Best, tim

    • Anonymous
      September 1, 2008 at 1:08 am

      Oh Linda I just cannot believe this whole cidp thing. My husband does get tingling in fingers and that only started the last couple of months. Plus either hot or cold on arms. That is when I told the neuro it is spreading. Now he does not have anything on face. If you have a neuro where you are cannot he do something. I would call anyway and tell him he has to either do something for you now or you will have to go to er at Duke. It is terrible to feel so bad that you are desperate, but when Bill worke up at 2 in morning and said something not right I did not hestate and took him to a hospital not the one our neuro works at. His nurse said if I had gone to his he would have come into see him.
      I told her (grinding my teeth) I did not know if he was going to die before I got him into a hospital and did not want to drive that far. This was an emergency.

      Where do you live now.? Please do whatever you have to do. I wish I could do something for you.
      Hugs to you