I went to see my Neurologist yesterday as a follow up to my IVIG treatment which she had stopped as my symptoms are getting worse , She said she could do no more for me , and that any more tests she would do again would just conclude I am getting worse , She wants me to see another Neuro Muscular Doctor at the University of Pennsylvania Hospital , She is sending all my results to him , She feels I may need to have a nerve Biopsy , My question is Why would I geta nerve Biopsy since I have already been diagnozed with CIDP from all the otehr tests includign alumbar puncture , I am very confused and while I was in her offivce I was so shook up that I could not understand what she was sayiing to me , I would appreciate any thoughts on this
Start keeping a journal and write down key words to look up when you get home. You need to get the nerve biopsy so that she can prove that you have CIDP. A lumbar puncture and nerve conduction study are not enough. The nerve biopsy should show "onion rings" that are characteristic for CIDP. If you don't have CIDP, then you may have another cause of your nerve damage which the nerve biopsy may help diagnosing. IVIG is not the only treatment, either. Have you tried steroids or plasmapheresis?
when IVIG stopped working for me my neurologist suggested we try rituximab ... I've had it twice, and each time, after a month or so it kicked-in and it got me walking again for several months ... why not ask your doc. about it
I just hate this happening to you and so sorry at the same time. I take my husband with me now a days for that very reason whatever I forget he remembers for me. Yes a journal is a great idea too. I do one with my heart measurements I suppose to chart daily. I had another heart doctor I know not on subject but to the subject they told me to keep a record of my simtoms as well.
My own Neuro doctor told me that he couldn't help me any more either a few months back. I been without one since. Yet at least your neuro doctor is sending you to another one. She must really care for you, and is concern. I think she is telling you what she told you, you need someone better then her. that is what I got from what you wrote, anyway.
When he, my neruo doctor try the pills on me and I had bad side effects that is when my Neuro stop wanting to be my doctor? Yet when I reach out to some other Neuro doctors it turn out to be worse for me. They didn't want to test both legs etc. I never understood how they came up with this other idea they had on me, they were told I had CMT? I ask if I had it to my Neuro doctor is all and it turn out to be something he must of written down? I never could get that copy of what he sent the newer doctors. Which would be nice to know.
Right now today I am waiting for June to see another group of neuro doctors that are on the list of part of the 7 that you find here and people have talk about. I am so greatful for this site we have here I have learn so much from all of you so I am taking the time now to thank you all. Encluding your selfJDK, without your questions, and others and finding this site CIDP people I don't know if I would of known of these speical 7. I have great hope I will get help myself. I also think you should be thinking of better care and better understand maybe ahead for yourself...what do you think?
As for where you are being sent you are getting some what I understand great help. Don't worry....my own inturnest thinks right now they should of done a Biopsy on my nerves.....I should of ask more but naw...wait and see if they do one. I never had your lumbar puncture. So far I have not been diagozed with CIDP or even had your IVIG treatments.
What you had was a good doctor so far...you have been lucky.
I beleive you are so many steps ahead of me....and your doctor is at least telling you she doesn't know what to do next....do you know how lucky you are? Some doctors will keep on gonig....you are very lucky that you might find even more help.
JUST Take someone with you next time or all the next times you see your new neru doctors....just at least for peace of mind. And write keep records....I also keep several folders not as complete as I should have of things they give me.
Good Luck sweetie and Best wishes for all the best and God Bless YOU
I ditto all the kind and informative comments given here. It is true that when a doctor admits they are baffled, that it is a gift. They are being honest and don't think that the sun, the moon and the stars revolve around them. But it sure can be frustrating, can't it? I agree to try and take someone for notes and support. I will pray for you to be supported in all this by people who care. It is tough but you will make it! It seems hardships enable us to help others down the road, with the same comfort we once received. Godbless you, friend:)
Thank you all for your input , I am waiting to hear from the new Doctor's office for an appointment , It will probably be a while before I see him as he is very busy according to my Neuro , Yes she is the best and did not want to waste money on redoing tests that were already done , As she said we already know the results , things have gotten worse , I just felt I was given a definitive answer that I had CIDP that was the conclusion they came to after all the testing , The only test that was not doen was the nerve Biopsy , Does anyone know what other diseases have the same side affects as CIDP? My husband and daughter are coming when I see the Specialist so they can be my extra ears .
Thank you all for your input I really appreciate it :)
Mary, I was diagnosed without the nerve biopsy also. They did a lot of tests and found it was CIDP without the biopsy. Not sure if they require it now. I was diagnosed many years ago.
My Mom was diagnosed with CIDP last June - this was done by nerve testing and a Spinal Tap..but never heard of a nerve "biopsy". She is now receiving IVIG infusions with some success. (Now that we are using the Privigen brand).
I had the IVIG treatments also. I thought they were helping some at first. After a couple of months I started to get worst until it was really affecting my job. At my last visit my Dr. decided to send me to another Doctor just like you.
Come to find out that it won't be until Jul;y 2nd. I can't wait that long. I called and complained. after a day or so with my complaining he called in a scrip for Prednisone to try and help me out until I can be seen. 50mg every morning for five days and the first dose seems to be helping allot. Probably not a cure but I will take it for now so I don't loose my job.
You wonder why they want to do all of these other test. It would be because they will have a real and proper diagnosis to be able to do the right and best thing for you. No more guessing. We will have to do what they say and then after that we will be cured or at least know what the best life has in store for us.
So don't give up just yet. Your best fight is yet to come. They just might be able to help you beat it. So don't fear this visit to the new Doctor. Be glad that they are finally sending you to someone that knows what they are doing.
These people should be up on all of the newest and best course of treatment for you. So hang in Bud.
I had the IVIG treatments also. I thought they were helping some at first. After a couple of months I started to get worst until it was really affecting my job. At my last visit my Dr. decided to send me to another Doctor just like you.
Come to find out that it won't be until Jul;y 2nd. I can't wait that long. I called and complained. after a day or so with my complaining he called in a scrip for Prednisone to try and help me out until I can be seen. 50mg every morning for five days and the first dose seems to be helping allot. Probably not a cure but I will take it for now so I don't loose my job.
You wonder why they want to do all of these other test. It would be because they will have a real and proper diagnosis to be able to do the right and best thing for you. No more guessing. We will have to do what they say and then after that we will be cured or at least know what the best life has in store for us.
So don't give up just yet. Your best fight is yet to come. They just might be able to help you beat it. So don't fear this visit to the new Doctor. Be glad that they are finally sending you to someone that knows what they are doing.
These people should be up on all of the newest and best course of treatment for you. So hang in Bud.
Thank you Awasos . I can see you have had a hard tiem too especially when you have to worry about your job too . I hope you get the help you need It is a shame you have to wait so long .
I don't have a date yet but have decided to go and see what the new Doctor has to say
I sympathise with yor plight. It seems all the attention is on long term solutions with little consideration given to the horendous pain and other "right now"symptoms we experience. Neurontin has been somewhat effective in doses of 600mg, 6 times a day for me. The pain, burners, and hot spots are worse without it.
Our symptoms mimic MS a lot of times. There is a reason MS patients are moving to California, Colorado, And Arizona in droves. Where a medication is availible that is not available elsewhere. I cannot condone anything illegal, and it sure won't make your doctor very happy. But I do what I must when there is no other relief in sight.
As for moving to places like my home state Arizona...think twice, as severe heat (or cold) can be very hard on people with these disorders. The hot climate never bothered me before getting CIDP. And others I have talked to with similar diagnoses have said the same thing. Another fact is that when we have this, strength is often zapped, the high temps already already plays havoc on that. Now, if one could be asnowbird that may be okay. Just something to think about.Mayo is closeby my house, but they are using pretty standard treatment like many others.
Bill7718 said:
I sympathise with yor plight. It seems all the attention is on long term solutions with little consideration given to the horendous pain and other "right now"symptoms we experience. Neurontin has been somewhat effective in doses of 600mg, 6 times a day for me. The pain, burners, and hot spots are worse without it.
Our symptoms mimic MS a lot of times. There is a reason MS patients are moving to California, Colorado, And Arizona in droves. Where a medication is availible that is not available elsewhere. I cannot condone anything illegal, and it sure won't make your doctor very happy. But I do what I must when there is no other relief in sight.