I got hit!

    • Anonymous
      September 18, 2007 at 1:40 am

      Here I go again. On Friday I started to feel crappy again after having a great day on Thursday. I woke up feeling not right, and by after noon I was throwing up and had a headache. I went to bed and slept for 3 hours and woke with a slight fever, aches, and more vomiting. I couldn’t even keep water down. By 10pm it got so bad I had to go to emergency. Needless to say I went through the ringer. I was severely dehydrated so they gave me four bags of fluid for 24 hours and ran all sorts of tests and did a lumbar puncture which by the way I never had had nor want to have again. Because our hospital is a teaching hospital I got to get the lumbar punture 4 times. The first three were attempts by a resident and the fourth was the gem. Anyway, they took extra fluid at my request since I have been wondering about getting this test done to get further diagnosis info. (I didn’t plan this I swear) So I got home yesterday and today called my neuro to touch base and to confirm that I should hold off on taking the methotrexate and to relay my request for further testing. When I asked the nurse practitioner about getting my protein count from the fluid and doing more tests to confirm the CIDP diagnosis ,she said they did not use spinal fluid as a diagnostic tool for CIDP. Does that seem right to you guys with CIDP? I am now really confused. But I asked them to run tests to rule out any other diagnosis. Meanwhile I am trying to get better and not be frustrated by yet another infection to fight. Luckily I have good blood counts and strong working organs so I am able to physically overcome these setbacks. I just am so tired emotionally from fighting to be well. I just wish I didn’t have to take an immunosuppressant which compounds the challenge with diabetes. I just seem to pick up everything. My goal is to try and get strong again, really eat well and try and keep viruses away. Anyway, thats my latest and I was just wondering about the lumbar puncture thing.

    • Anonymous
      September 18, 2007 at 4:19 am

      My neurologist told me that a lumbar puncture can help confirm CIDP but cannot eliminate it because some people do not show protein in their spinal fluid. A positive protein test in spinal fluid means you have some kind of inflammation going on but does not definately point towards CIDP as the source. It’s more information but not the only info needed to confirm CIDP.

      And I had a similar experience with my recent LP – the students tried first then the old pro came in and jabbed me once for the final stick. (he said I had calcified ligaments – what the heck is that?) I also found out through my very knowledgable and talkative neurologist that it is the size of the needle used in the lumbar puncture that makes the difference in whether you get that headache or not – not the skill of the stabber. Because I had my LP just before a trip to the mountains I suffered through a “spinal headache” for the entire five days because the hole couldn’t close with the extra pressure of being in the mountains. Who would have thought it? Rather than do the painful “blood patch” my favorite neurologist suggested high amounts of caffeine, since I like coffee this was no hardship. After three days of drinking coffee all day long the hole closed up and no problems since then. Something to keep in mind if you ever get one of those lumbar puncture headaches where everytime you sit up you get a headache that makes you throw up. Caffeine – who would have thought that either? For a migraine I’ve heard of caffeine but hey, I’m not complaining, it worked!

      I am so sorry you had to go through all of that – I can really sympathize as I’ve been through similar scenarios myself. I do my best to avoid throwing up at all because I get something the ER folks called a “vagal reflex” or was that “VAGUE-al”? Once I start throwing up I can’t stop until I pass out or get promethazine in large doses. For this reason I never do narcotics, never get drunk and now have to avoid amusement park rides too. 🙁 Fortunately I am seriously resistant to stomach and intestinal illnesses – my husband got salmonella twice when we went out to dinner, we shared the same food, he ended up in the hospital – I was fine, not even a burp! 😀

      Good luck with everything, I hope you feel better too. I wish I had some advice on how to make it all go away but I don’t. Just add it to the list of “things I’d rather not do again if I have a choice.”

      Take care,


    • Anonymous
      September 18, 2007 at 7:26 am


      of a practical nature she was wrong. not all use the lp, but it should be so. now that you have the fluid, make it happen. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 18, 2007 at 9:31 am

      Just a tidbit that I’ve learned from spending so much time in the hospital with my daughter – even in a teaching hospital you can refuse to be a ginea pig. If you tell them that you don’t want the student to do something they cannot force you. They have to get a dr or a nurse. I used to only let the nursing students take Emily’s blood pressure, heart rate & temp. EVERYTHING else had to be done by the RN.

      What tests did they do with your spinal fluid? That is what you need to find out.


    • Anonymous
      September 18, 2007 at 11:20 am

      Linda, I hope you get feeling well Soon! I know how you are feeling-been battling it myself for the last week. Remember to drink enough water(i like lemon in mine, it helps the tummy) small sips until you can handle the larger ones with no problem. Request your med records including all tests and results from your hospital stay-you have the right to get them. Ask your dr for a list of tests that they use to dx with. there are a combination of tests that most drs use to dx cidp, not all drs know what they are doing-keep that in the back of your mind. Remember also that not all cidp people have the elevated count in their lp, just as with gbs people, there are always the few who have normal counts and test results but still have cidp. The dx isn’t made only according to tests results either, its the patients symptoms, time of such symptoms, along with many tests results, and even at that its not easily dxed. Don’t give up on your quest. Take care and get plenty of rest!

    • Anonymous
      September 18, 2007 at 10:16 pm

      Thanks all,
      Today is a better day. Able to keep everything down and in and headache subsided. Just a sore back and some wobbly standing. Did not hear from the neuro re: more testing. I have to just focus on getting stronger. I am at the point where I am wanting to just forget everything, you know just forget that I even have this and just go on as if I don’t. I am going to just pretend when I wake up tomorrow that I never even heard of this diagnosis and that I can walk just fine and I am not even going to try and monitor my body. I am not going to see if I feel any better or stronger and I am not going to do PT or OT. I am just going to wake up, drink my coffee, meditate, take my dog for a walk and enjoy the sunshine. Denial can be a river and I am diving in. See you on the other side.