trapped in a nightmare

    • Anonymous
      October 31, 2009 at 11:38 am

      I dont know what to say the doctor at scripps refered me to a rheumatologist who specializes in fibromyalgia. I just dont know what to say. I had all my medical records with definitive emgs/ ncv from the 2002 and my half definitive recent one. my MRI that says demyelination in C5,6and 7 from 2004. I kept my mouth shut and just showed him my spreed sheet that contained doctors summaries, lab reports and my own description of symtpoms and he said I wouldnt bring this out in the future, it makes you appear neurotic.

      my husband is now saying, what more do you want. I told him fibromyalgia doesnt cause nenervation and paralysis. and he said “this is scripps dont you think these doctors know more than you”

      I just dont know what to say

    • Anonymous
      October 31, 2009 at 12:04 pm

      who cares if its Scripps. YOu need to find a doctor who will look at your paperwork and want to help you, not cal you neurotic. what a tool. He isn’t a very good doctor if that was his response. He is one doctor there are millions more out there. obviously fibromyalgia doesn’t cause all of your problems.
      Hang in there and don’t give up. there is a doctor out there that will help you.
      Best of luck to you in your search for a doctor that will take you seriously.

    • Anonymous
      October 31, 2009 at 1:31 pm

      I was told for years I had Fibro and was on 2 crutches going down hill.
      Fibro is a simple catch all diagnosis that gets your medical visit paid for especially if the doctor has no real idea what you have.
      (I do have friends who do have Fibro and its a real illness).
      Find a good neuromuscular physician-keep trying till you find one that will really listen to you. Can you refer yourself to neuro?? I had to.
      So many of us on this site had to push hard to get a diagnosis. It’s very upsetting to be told you’re not really ill or what you have is minor.
      It took me 6 years to be diagnosed.
      It may not be CIDP but it needs to be diagnosed correctly for treatment.
      Good luck

    • Anonymous
      October 31, 2009 at 9:26 pm

      limekat is right . Sometimes the Dr. just can’t figure it out and sticks on a label and goes on. I had one neuro totally blow my diagnosis and another could not figure it out but had the strength to say he didn’t know, and he sent me to someone else, who was wrong first, and then finally got it right.

      CIDP can be a challenging diagnosis. I wish you the best

    • Anonymous
      October 31, 2009 at 9:57 pm

      All you need is that ONE doc who [B]listens[B][/B][/B] to what you say, and is capable of ‘proscessing’ what is being ‘said/written’ about you…You must/have to get copies of every file any doc has written about you..out-patient, consults in hospiitals etc. because docs often RECORD for the record things about you based on very incomplete informations. I have to tell you that I’ve had zero problems in getting all but the most confidential of my files from him? But, this access to records does vary from state-to-state.
      My neuro doesn’t charge for record copies [tho he could], but my GP charges a $1.00 a page. The hospital is worse as they copy all in and outpatient things….such as temp, food eaten, temps at what time of day and a slew of other garbage that you want to sort thru to find the ‘good stuff’ It is disheartening at times, but it is also enlightening as to what records/past docs have been contacted about which various whats.
      Also? Take into consideration that many docs are in some kind of ‘ego’ competition w/each other? They will dismiss the opinions of those they don’t like and just ‘go’ w/the ones they do like. It’s politics at its worst as YOU suffer. My only line about getting other ‘opinions’? IS ‘We didn’t really communicate well’….never say anything adverse about another doc from the get go? That gets you ‘labelled’ as a possible ‘troublemaker’.
      My first neuro? I stayed w/him for 7 months, he ignored my nerve progression complaints and simply upped my meds to the point of hallucinations… That is when I went and got second and third opinions each higher up the ‘medical food chain’! That last ‘opinion’ was done by the head of a local teaching hospital which allowed me to get ALL of those tests done locally and expediently. Neuro #2 is my choice due to ease of accessability and he is GOOD! That neuro head’s ‘opinion’ lit the fire under neuro #2 to get all testing done? And, Start IVIG therapies once all results were in…. In a way #2 was off the ‘hook’ by fulfilling neuro head Neuro #3’s recommendations – AND#3 had no problem in sending me a copy of his letter to #2!
      BTW? Neuro #1? While highly regarded in some circles? I and my DH call ‘the quack’! I know in my heart that IF I had gotten these tests rolling along sooner? Which #1 was lothe to do, I would not have as much damage as I do now!
      Honestly tho! When this stuff hits you? You don’t know nothing! As if we ever encountered a ‘neurologist’ before? I certainly had not and then they spew out ‘words’ that have NO meaning to us at all until we take the time to
      ‘translate’ them.
      Soo, Please do not give up- It IS like being on a bad roller coaster ride during a thunderstorm and hail to boot! But there IS an ending. And the more persistent YOU are in playing the ‘game’ the better off you will be in getting appropriate treatments!
      Take care in what and now you say things? Keep to the facts essentially, and then only elaborate that this whole process has been frustrating…no more? No less.
      Hope and perserverance are your goals now! Go GET ’em!

    • Anonymous
      October 31, 2009 at 10:35 pm

      thank you for your replies it helps soooo much to know that others have survived this. I am gathering everything I can and was told by a doctor to organize everything with tabs and a binder and relax and tell it like a story keep the binder on hand if reference is needed. I am calling Ken’s doc on monday. i hope I can get in soon but I believe it will be worth the wait.

    • Anonymous
      November 1, 2009 at 10:08 am

      Did you tell this dr that you had plasmapheresis & steroids & you improved afterward? To my knowledge there is nothing that will improve fibro.

      UGH! UGH! UGH!

      Here’s hoping Ken’s dr will see you soon.


    • Anonymous
      November 1, 2009 at 2:37 pm

      It WOULD be good if you did get to see Dr. Sahagian.
      He is a neuro-muscular neuro, and deals with all the neuro-muscular problems.
      He is very personable, and listens when you talk to him.
      I think he told me once, that he had 5 CIDP patients, though, I was his worst case. As I had mentioned once before, in that office, there are about 10 different neurologists, each specalizing in a different neuro problem.
      Insist that you see Dr. Sahagian. I was with a different doctor first with that team, then asked to be seen by a different one, as I did not like him.
      I then went from Dr. Frishberg, (the one I didn’t like), to Dr. Chippendale, another doctor there, and when explained the problems and decline of my body, Dr. Chippendale said I should definitely be under the care of
      Dr. Sahagian, as his specialty is neuro-muscular problems.
      So, do insist on Dr. Sahagian. He is also a doctor that does his own testing, so that he knows and sees the answers for himself. I see him at his Oceanside office, though you will probably see him at the Encinitas office, which is in a building right behing Scripps-Encinitas Hospital.
      Good luck on your journey to find a good doctor, and if you do get
      Dr. Sahagian, I hope you will be pleased with him.
      I am actually seeing him on the 11th–I see him every 2 months.

      And do tell him if you are having pain, and what you are taking for it now.
      And if you are having muscle spasms, and what you are taling for it now.
      He has me on Gabapentin and Vicodin for pain, and Flexeril with Diazepam for muscle spasms/cramps. Tell him that you belong to the GBS/CIDP website and chat room, and that Ken Soden recommended that he was a great neuro-muscular neurologist to see. I have told him about the site, and how we all support each other here. And I told him what Alice is going through right now, though, he is a progressive doctor, he is not pleased yet with the stem cell procedure, though he is keeping a watch on it.
      Dr. Burt, Alice’s doctor in charge of that program, has not written up about the program yet, so nothing has been released to the neuro-society about the program, and the programs results–good or bad.

      Hope you like Dr. Sahagian–just tell him your frustrations of finding a doctor who will listen to you, including past paralysis, etc.
      All the best,

    • Anonymous
      November 2, 2009 at 3:31 am

      My sister-in-law is a doctor and she spent one entire weekend organizing my binder as she believed other doctors would find it useful. I did a little tinkering based on taking the binder to many doctors and here is how it’s organized:

      By year with the current year on top then in each year:

      [B]History of Primary Issue[/B] (CIDP for me)
      ~one page summary of disease onset
      ~summary of hospitalizations and urgent events
      ~main doctor’s notes (for me this is my neuro at Hopkins)

      [B]Consultations[/B] (the ones I’ve had)
      ~notes from other neuro’s I’ve visited
      ~infectious diseases
      ~internal medicine

      ~repetitive stimulation test (to rule out MG)

      [B]Imaging[/B] (with CDs of actual images when possible, I pay extra for this but it saves me time in the long run)
      ~bone scans
      ~CAT scans

      ~”routine” diagnostic blood tests are summarized in an excel spreadsheet on the front of the stack
      ~”non-routine” blood tests get their own stack and summary
      ~lumbar puncture
      ~bone marrow tests

      What I should also have in there but don’t is my spreadsheet charting my disease’s progress (or not) along with treatment side effects etc. It’s a nice little chart that shows from week to week where the battles are and how I could/should be feeling on a particular day of the month. It has taken me a long time to come to anything resembling a routine with this disease and I can’t tell you how handy it is to have a bad day, check my chart and see that it’s expected. Makes it easier to forgive myself for dropping my third favorite coffee cup when I look and see that this is the day I typically have tripsy and dropsy all day long. I used to get so frustrated “why is this happening to me now” type of stuff but now I can look at my chart, see where I am in my treatment cycle, quickly factor in the ten zillion other things that influence my disease, and see that I am right where I am supposed to be. And I gave my potential bad days names too just to make them a little more personal and a little less like enemies… yesterday was my Tripsy and Drospy Come For Tea day… today I get treatment so it’s Sleepy, Creepy, Shiver Me Timbers day. 😉

    • Anonymous
      November 2, 2009 at 9:26 pm

      Hi, Tara;

      You know more about you than any doctor. If the DX of fibromyalgia doesn’t sound correct to you, there’s a good chance that you’re right. You just have to keep going and find other doctors. It’s terrible, I know. Most of us have been through a very similar journey. We’re here for you to vent to. You’re not crazy.


    • Anonymous
      November 2, 2009 at 10:36 pm

      yeah I really think the pressure point test would not fly well with me seeing as how I cant even feel my muscles when I squeeze them.

      My husband, god bless him, has never had the opportunity to sit in on a consultation with me. I have been told I may have everything from mixed connective tissue disease, lupus, acute gbs, hydrosyringomyelia, multiple sclerosis, fibromyalgia, and cidp. I used to jump onto any possible hint of diagnosis but now i am sceptical maybe synical. my husband jumped on board to the suggestion so quik because this is all new to him. I will leave him at home from now on however.

      when I first read about cidp I cryed because it fit so well.