Maybe CIDP?

    • Anonymous
      July 5, 2007 at 7:03 pm

      Hi Everyone-

      I have been dealing with issues on my right side for two years now. I started going through the doctor cycle and rested for about a year realizing that whatever was going on was definitley not going away. So now after seeing my second neuro in this process (I also moved) he seems pretty interested in whether I have CIDP. He is sending me to a neuro who doesn’t see many cases (heads a neuro unit at a hospital) but specializes in CIDP. Basically I have extreme weakness in my right arm and leg mainly. I can barely lift my muscles on my right side or hold resistance (was my stronger side at one point). I am was very athletic. I even did a half marathon through this process but realized it was my last race because the pins and needles and not feeling my leg for 4 miles convinced me I was done. I have neuropathy in my hands and feet (both sides). I also have no reflexes left except for in my feet. My muscles on the right side seem like they are stiff or swollen from nothing. They ache too. If I do too much I have twithing and tingling in my muscles. The tinling comes and goes no matter what. I have had 5 recent MRI’s to rule out MS and for the most part they were fine. There were no lesions, however there was a torn rotater cuff in my shoulder (he did my right shoulder b/c my arm was so weak) and what strikes me and him as wierd is that there is a develepmental sac at the very bottom of my lumbar spine. Does anyone know anything about what that is? I heard all this via the phone. He doesn’t think it is related because of my weakness in multiple muscles, but I still find it wierd.

      So I guess I’m just trying to prepare for my appointment. Does this sound like CIDP? The symptoms seem closer to this then anything else I have heard.
      I am trying to get an idea of what my appointment with this specialist will be like as well (my sister might come from 4 hours with me if it is needed). It is this Wednesday and my last neuro said he would rather this specialist take care of the spinal tap and EMG. If I am to get a spinal tap how long does it take to get in to one? A day, that day, a week?

      I thank anyone who reads this and would love any feedback. I pray you all are getting along well and am comforted by the fact that if I do have CIDP I have somewhere to turn to.

      Thanks,

      Tess

    • Anonymous
      July 5, 2007 at 7:43 pm

      Tess

      I know your fears, but, cannot answer to the sac problem. My old neurologist
      once told me that no reflexes knocks out MS automatically. So…that is good
      news for you…yes I had tingling as well, then it stopped.

      My spinal tap took a long time…the neurologist takes three tubes of your
      fluid from your lower back to check for protein loss in it. You will also have
      to have a nerve conduction test…that takes 1 hour, for me three because I
      hate shocks, lol…but that test won’t be done with the tap. After the tap,
      you have to lay there for 1 hour, otherwise you will have one enormous
      headache. I would say, about 2-3 hours, but it would be best if someone
      can go with you, to drive you home…

      Good luck, Tess

      Miami Girl

    • Anonymous
      July 5, 2007 at 9:28 pm

      Tess,
      The nerve conductivity test took less then an hour. I really did feel any pain, just a tingling sensation.

      The spinal tap doesn’t take that long, but you have to stay still for an hour or two. I didn’t feel it when I had it. The only way I knew it was over was because the doctor told me he had finished.

      I agree with Miami Girl, it would a very good idea to have someone drive you home. That will allow you to relax and enjoy the view.

      I have no idea what to tell you about the “sac”. It might be a good idea to ask the doctor during the pre-procedure interview.

    • Anonymous
      July 5, 2007 at 9:51 pm

      Hi Tess,

      I’m not a doctor by any means but is there anyone in your family that ever had a neuro problem? Having gone from Dr. to specialist and so on, I had to completely rule out Charcot, Marie, Tooth as well as MS. Sorry to hear about you troubles, a non-diagnosis makes it that much worse…Dughy

    • Anonymous
      July 5, 2007 at 10:22 pm

      Thank you guys for the responses already. I really appreciate it. At this point I just want some sort of anwsers and am ready to get the final tests done.

      Did it take long to get in to have the actual spinal tap? I know with my MRI’s the appointment took a week to get in to. I’m sure it varies from place to place, but I was just trying to get a sense of how soon it might happen after my appointment. I definitley want someone with me although I could probably take a taxi home (NYC).

      I haven’t heard any mention of Charcot Marie Tooth from my doctors. I have had blood work done and my b12 was low, but a deficiency issue was also rulled out. Other then that I would assume that they would have looked at that. I looked it up online and my feet seem pretty normal looking (as far as feet go 🙂 ). I do have plenty of issues with my arm on that side too, which doesn’t seem as prominent until later with CMT. My progression of issues started in my neck and worked its way downard, but I will definetly ask about that. Thanks for that mention.

      I know I don’t have a diagnosis of CIDP so I hope no one feels as if I’m barging in. I really appreciate your help.

      Thanks again!

    • Anonymous
      July 5, 2007 at 10:23 pm

      oh and there have been no other neuro problems in my family besides alzheimer’s which is a little different of situation at my age.

    • Anonymous
      July 5, 2007 at 11:04 pm

      nope we don’t think you are barging in, we are here to help however we can. I hope you get some answers soon.

      Jerimy

      [quote=maybecidp?]Thank you guys for the responses already. I really appreciate it. At this point I just want some sort of anwsers and am ready to get the final tests done.

      Did it take long to get in to have the actual spinal tap? I know with my MRI’s the appointment took a week to get in to. I’m sure it varies from place to place, but I was just trying to get a sense of how soon it might happen after my appointment. I definitley want someone with me although I could probably take a taxi home (NYC).

      I haven’t heard any mention of Charcot Marie Tooth from my doctors. I have had blood work done and my b12 was low, but a deficiency issue was also rulled out. Other then that I would assume that they would have looked at that. I looked it up online and my feet seem pretty normal looking (as far as feet go 🙂 ). I do have plenty of issues with my arm on that side too, which doesn’t seem as prominent until later with CMT. My progression of issues started in my neck and worked its way downard, but I will definetly ask about that. Thanks for that mention.

      I know I don’t have a diagnosis of CIDP so I hope no one feels as if I’m barging in. I really appreciate your help.

      Thanks again![/quote]

    • Anonymous
      July 5, 2007 at 11:08 pm

      Tess

      It took a few days to get the appointment to do the tap…it was done in the
      hospital outpatient area. It took a couple of hours for my neurologist to get
      everything organized and done…but my tap was okay…

      Just don’t drive home…you could feel drained.

      Good luck to you…

      Also, could you have a tumor on the spine…ask the dr. what he means by sac. I don’t want to alarm you by any means…I didn’t have any neuro
      problems in my family either…but now, they include other things…who knows.

      You’ll be okay after the tap…

    • Anonymous
      July 5, 2007 at 11:28 pm

      Always keep in mind that diagnosing any neuro disorder/order/condition/disease….is through the process of elimination, often a long protracted process…A site I picked up on is ‘neuroexam’ which explains what a neuro should do to you during various parts of an exam and why…..Also, remember that sooo many other medical issues mimic/imitate/overlap CIDP or GBS…
      Do a search for ‘spinal tap’ and you will learn far more about the good and bad things about spinal taps than you ever wanted to know… Then later, should a neuro want to have nerve conduction studies done…and all those OTHER eccentric tests.. [I admit, I’ve only had 90% of them] that you go, schedule and do…and follow up with a zeal that makes the docs KNOW you aren’t a scaredy cat. Be clear about what you know/learned, but not about the whys and hows…to all concerned…just let them know you are ‘curious’? Sort of make it clear that it’s the relief of PAIN and weakness that are your first priorities..The whole why thing will be rumbling around in your brain forever. Getting good treatment is FIRST and foremost so things don’t deteriorate! It isn’t caution, it is PREcaution that can stop that.
      From my own experience, I’d had a pneumonia about 4 months before my CIDP onset [called sub-acute…but at that time..IF I’d known what they’d meant..well I would have punched their lights out!] It was the nerve conduction studies and the spinal tap that were my saviours sort of…It only took visits to 3 neuros to get the testing and diagnosis then treatment..14 months. Which is somewhat rapid in this day and time…I believe ‘bubbleboy’ had the speedy diagnosis record? Am I wrong?
      B-12 when really low for long periods of time can result in neuropathies, but, never, do I recall, on one side primarily..Certainly can’t hurt to do mega doses of ‘methol cobalamin’ sublingual [under tongue] B-12 tablets..If you need them you will asorb them…if you don’t it’s like vitamin C…passes thru the system.. The more you take up to 2000mcg should be OK…The whole nutrition thing really confuses me…and I get more and more confused when reading about meds+ some supplements at the same time…Maybe Jerimy or Norb could outline how they do supplements, for a different set of perspectives on what each does and why…
      I am afraid I’ve gone on too long…but, did you have a bad cold or flu a couple or few months before? That connection could be of note. Hope this helps in some way.. just know that whatever…you are not alone in the fears and scariness of the whole THING.

    • Anonymous
      July 6, 2007 at 8:13 pm

      Hi Tess
      Not knowing is definitely hard. I happen to have both Charcot-Marie-Tooth and CIDP. The symptoms are similar but the diagnostic procedures are different. CMT confirmation requires genetic testing, and CIDP requires the lumbar puncture. Interesting about the “sac” — the first doc I worked with was an orthopedic surgeon and he originally suspected entrapped nerves at the base of my spine. Evidently, its a fairly common form of spina bifida that normally goes undetected.
      Good luck with the spinal tap!
      Helen

    • Anonymous
      July 6, 2007 at 8:33 pm

      Hi homeagain,

      I was on IVIG exactly 4 weeks after my original consultation with a neurologist. I had EMGs and conduction tests, a spinal tap, MRI and the plethora of blood tests to rule out other causes, all within a week or two. Then it took another week or so to get insurance authorization for IVIG and to set up my first round. That was almost exactly 1 year ago!

      Helen

    • Anonymous
      July 6, 2007 at 9:15 pm

      Tess,

      CMT came up with my neuro, actually the head of neurology at Ohio State. I think they tend to look for hereditary afflictions first. Early symptoms are, as stated, overlapping. Neuro’s have a tough job especially those that are only briefly involved in the diagnosis phase. Hopefully your doc’s come up with a proper diagnosis and an effective treatment. We’ll all be here in the meantime…Dughy

    • Anonymous
      July 9, 2007 at 10:48 pm

      hello everyone-

      at this point, i’m looking forward to knocking out these two tests. my sister is now coming down for the remainder of the week so if they can get in the spinal tap hopefully they will this week. i was more worried about inconvienencing her then anything. 🙂 i’m also thankful that i will have another set of ears. after two years i finally feel like i’m on a track to getting some answers, but the impatience is still there.

      as far as illnesses or issues before this the only thing i can think of was about six months before i did have a tonsilectomy. i had battled about 10 bouts of strep over a year and a half time span before they finally decided at age 19 they had to go. my first bout included a fever of 106 for three days.

      i am taking b12 vitamins now, but the hematologist said that i’m not deficient even though i am low.

      as far as the sac on my spine i am also interested in hearing more about it. from the short phone conversation with my original neuro he doesn’t believe it could be causing all my issues in both my upper and lower extremities. he said it has been there all my life. but as far as spina bifida, my uncle did have an extremley bad form of it for his life.

      dugh… i’m originally from ohio (where my first neuro was). i wish i would have had your neuro! i acutally just got back from a nice vacay there cooking out. it was nice to get my mind off of this. go bucks 🙂

      well i really appreciate your guys’ help again. i will let you know what the doctor says. hope you are all doing well.

      thanks!

    • Anonymous
      July 10, 2007 at 11:52 am

      Hi Tess,

      I’ve read some stories here that lead me to think I’ve been pretty lucky as far as a diagnosis. The neuro here in Mansfield sent me to OSU straight away. Not because he wasn’t sure, but because he wanted confirmation. Of course, the patient is left in the dark during this phase. The luck seems to have ran out however, I’m not responding to IVig, possibly due to the amount of time from diagnosis to treatment?

      North Central Ohio is nice this time of year. My daughter is working at Put-In-Bay this summer and her grandfather took her mother and I out there Sunday to see her. Needless to say, I don’t get around on level solid surfaces very well, let alone the docks beside the Boardwalk! Of course there’s a half dozen people with us that want to know what’s wrong with me (like I really know?). I just get a little tired of explaining this, over and over and… Yesterday and today have been “payment” for the weekend trip to the island, I haven’t done *%$# since…Dughy

    • Anonymous
      July 10, 2007 at 1:58 pm

      I like my neurologist in Phila., but after bad experience with IvIG I decided (with his encouragement) to get a second opinion in NYC. So after a slew of blood work and thorough emg/ncs studies, all he can say is that he has no idea what it is….

      So now what? Consult another neuro? Go back to the first one? Nothing worse than not knowing

    • Anonymous
      July 10, 2007 at 5:06 pm

      dughy-

      i hope you start to feel better. what is the next step for you? how long have you been trying ivig?

      billstein-

      if you do go to nyc let me know. i’m actually living there now. i go to my neuro that is very familiar and specializes in cidp tomorrow. i’m not going to recommend him till i go, but i will keep you posted. is there a particular doctor they are recommending?

    • Anonymous
      July 13, 2007 at 2:10 pm

      well it doesn’t look like cidp… i just thought i would let you know what happened.

      so i went to the doctor. it was really weird though! my muscles and my reflexes were behaving much differently then they had for my last two neurologist visits (with a different neuro who had sent me to this new guy). my reflexes seemed pretty normal except my right arm they were absent. the last time none of my reflexes were there except in my feet. then when he tested my muscles my strength seemed pretty close to normal. my appointment was at 9 am and all of my issues definitely get much worse by the end of the day. my other neuro appts have been in the afternoon or i would have to walk a while to them. usually i can barely withhold any resistance on the right side. which is frustrating because lo and behold that afternoon the issues defintitley grew. the neuropathy was still there though.

      he did the ncr and emg and they both came back fine. which is good. but i would like some awnsers. he is putting me on some medicine that he said would make me tired but help with nerve pain (i’m already so tired though). he took more bloodwork and i know he is checking my b12 and might get me some shots, but the lab tech was saying why is he testing all these wierd things and had to look up the test in a book so i’m not sure what else he is looking for. he also took xrays of my lungs. and when i asked him why, he said he didn’t want to scare me???? and i gave him a seriously? look… and he said the name, but it was so long i couldn’t remember it…. any ideas? i feel like it started with an s or a p…. vague i know…

      he seemed to think that everything is so slow moving that it couldn’t be cidp (also my lack of nerve damage seems so too). he seemed intrigued but not overly concerned.

      my next appointment with him isn’t till october as a follow up, but he is going to call me about my results.

      well thanks for everyones feedback and support, even though i had no answers. i hope you all can find a treatment that works well for you and want you to know that the support here is amazing. good luck to you all and god bless.

    • Anonymous
      July 18, 2007 at 4:29 pm

      Don’t be afraid of the spinal tap. Mine took about 15 minutes from the time I went into the hospital room until it was done. They put a bit of freezing in the spot, then insert a small needle, you should not feel anything. My neorologist prefers a “dull” type needle instead of a sharp pointed type so he can feel when it goes through the membrane to prevent nerve damage. I left the hospital 15 minutes later with no side-effects at all. The results took 2 days.

      I hope this helps

      Paul

    • Anonymous
      July 18, 2007 at 4:59 pm

      my husband has the cdp, but won’t have treatment for it because he has got MRSA in a wound, from a bowel op 3 years ago, he has had the cdp about 10 years but was only diagnosed 2 years ago, he has got to see the neurosurgeon next week, and is going to see if the neurosurgeon will help him get registred as CDP to get help with having hand controls fitted to the car.
      Lync