New to You
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June 11, 2007 at 12:51 pm
I am a first time user of this forum and am so excited to have found you. I was diagnosed with CIDP about five years ago after going in for a routine emg for carpal tunnel syndrome which I attributed to my new profession as a massage therapist. I was told I had a rare disorder that may render me disabled and that I would need to see a neurologist ongoing, and was sent home with an appointment for three months later. No imformation written or otherwise and no mention that this was related to GBS. Had I had even that little piece of information, I would have gotten to the GBS/CIDP Foundation years ago. So in the meantime I have been dealing with this quietly and unsure about many of the symptoms I have experienced. Being a massage therapist full time and also a type one diabetic for 32 years, I often attributted my fatigue, muscle aches and weakness to these and other reasons. In the summer of last year I got so exhausted I could barely get through half a day. But I pushed myself thinking that I had to keep myself physically strong in order to not give in. I also was turning 40 and refused to let age slow me down. But really I was struggling horribly and blaming myself for not doing better. I had never had any treatment prior to this because I didn’t think I needed intervention until I became “disabled”. My doctor reluctantly agreed leaving the decision up to me and my lifestyle. I finally agreed to IVIG in October of 06 but had to stop treatments due to asceptic meningitis. In December I was rendered unable to function due to a bulging cervical disc that made my entire arm numb. At this point the doctor put me on celcept which made me violently ill. I ended up having to disolve my entire business, apply for disability and because my treatment options have been limited due to the diabetes, I was back to no treatments, weak and discouraged. In april I started Methotrexate which I am slowly increasing and am almost up to full dose. So far the side affects are minor but I have no improvement as I expected because it takes 6 to 8 months for results. Three weeks ago there was an article in my local paper about the GBS/CIDP foundation and that is how I discovered this forum. I am so sorry to be so lengthy but as you can imagine not having any where to tell my story and now given the chance I guess I just need to put it out there. Thank you so much for listening. Sometimes that is all I need instead of the uneducated suggestins and not so helpful comments made by others. Is there anyone who has diabetes and CIDP and is gettihg similar treatment. I welcome any of your input. Thanks so much.
Linda -
June 11, 2007 at 2:35 pm
Linda,
I don’t have diabetes but I do have CIDP. I just wanted to say welcome to our family and we are glad that you found us.
Jerimy
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June 11, 2007 at 6:41 pm
Hi Linda, and welcome. My son has type 1 diabetes.
Helen
CIDP & CMT -
June 11, 2007 at 6:55 pm
Hi,
my ten year old son too gets the aseptic meningitis reaction to the ivig. We get through it by slowing down the flow rate of the infusion (50 max) and premedicating with zofran for nausea, benadryl for allergic reaction, tylenol for headache, fever. ALSO, there are different types of ivig! Please check to see what yours was. Some of them are mixed with sucrose, which in your case with diabetes would not be good, could even have led to renal failure. Do you know what your flow rate was? What was the brand and the mixing solution (sucrose)? Did you premedicate? Perhaps some of these things contributed to your bad reaction and you could give it another try. I hope this helps to start the ball of questions going. Dawn Kevies mom 😮 -
June 11, 2007 at 8:09 pm
Hi Linda,
I am diabetic,have CIDP,and get bi-monthly infusions of IVIG.I’m on Avandia-may be switching it because of all the bad press.I was already getting IVIG when I was diagnosed as diabetic.No problems so far.Glad you found the forum.You’ll find you have another “family” now.Welcome! -
June 11, 2007 at 10:46 pm
Linda,
I only recently was diagnosed and I sort of tripped over this site. I can’t offer you any input relating to diabetes and CIDP. I just wanted to welcome you here. One thing I have found here is friendship. The support that I found when I first posted here and the messages have meant the world to me. I have even made a very very close friend here and we have never even met in person. No one judges and always tries to offer whatever help they can. Many people here are a great source of advice and encouragement. Whether a good day or a bad day, I encourage you to share it here. It does more good for me than all the medicine they can prescribe.
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June 11, 2007 at 11:09 pm
Linda,
Welcome to the forum. Please feel free to ask any questions you might have. There are people who can tell you their experiences with CIDP. -
June 12, 2007 at 12:13 am
I have CIDP and my last blood test my sugars came back 11.7! I have had 2 IVIG treatments. Doctor is concerned and wants to repeat the sugar test in 3 months. Have you tried gabapentin for the nerve pain? It seems to work for me. It is worth asking about. Welcome to the family!
Rhonda
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June 12, 2007 at 12:38 am
Thank you so much to everyone who replied. I can’t tell you what it means to me to read your experiences and have you understand mine. In response to some of your suggestions; The IvIg was not the one with sucrose and I was pre-medicated with benedryl, tylenol and the rate was slowed down. I guess my neuro didn’t want to put my body through anymore stress. I am also taking neurontin for pain and do find it helpful. I feel pretty secure with my neurologists thinking and his conservative approach due to the dangers of treatments affecting my diabetes. And I am learning to accept this condition as yet another chronic condition to contend with. Its just that it is so unpredictable whereas with the diabetes I know what to do so there is a greater sense of control. I was amused to read the flip-flop dilemma as I too want to wear my flip flops and strappy sandles without fear of falling or tripping and its that kind of experience that only those of us with CIDP can appreciate. I have given up ffs for long distance or away from home and I do use a cane when I am uncertain of the terrain. I find the security of it very helpful. What an arduous and tedious obstacle this all is, but I am so grateful to not be alone anymore. Thank you
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June 12, 2007 at 4:26 am
Hi Linda
I’m very new in the forum too, but for me it has been very useful. I don’t feel alone anymore with my CIDP and here you can find very good friend that understand you perfectly and we all can share ours experiences. So write and ask as much as you need, certainly someone will have an answer for you.
Welcome and best wishes.
Lourdes
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June 12, 2007 at 8:14 am
Linda,
Welcome to the site! Had to smile over you flip-flops, I have a small fortune in cowboy boots that I can’t wear anymore but can’t seem to part with. It was hard letting go of all the activities I use to do but have tried to come up with new ones. You’ll find alot of support and friendship here. Feel free to ask lots of questions. I think we need to rely on each other as well as the doctors as there is still so much they don’t know about the CIDP and there’s a wealth of info right here.
Pattie
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