Just want to Know how many of us hae Diabetes and what kind and are insulin dependent. Also if it is under control and how well controlled. Does your treatment affect you diabetes.
I am type 2, using both Noalog and Lantus as well as Metforum. It is under controll most of the time (A1C 6.4). After last IVIg having trouble with levels (around 175 most readings).
FYI, I also have diabetes. It's type 1 diabetes, which I have had for more than 47 years! I've been taking IVIG for more than 11 years and have had CIDP-like symptoms for at least eight years. I use two types of insulin (Lantos and Humalog). My last hemoglobin A1C was 5.2, which is a personal best. Lately, my blood sugar control deteriorates after an infusion and then gradually improves. This pattern is fairly recent and seems to have something to do with my using Androgel to correct low testosterone levels. Low testosterone is common among diabetics and correcting it is said to be beneficial for blood sugar control. My use of IVIG predates my CIDP-like symptoms. I also have common variable immune deficiency, which is the primary reason that I need IVIG. I believe my neuropathy is primarily due to CIDP, rather than diabetes, but my neurologist doesn't agree. However, he does agree that diabetic neuropathy should not respond to IVIG treatment, although my neuropathy does. I have moderate autonomic neuropathy; causing constipation, acid reflux and slow digestion (gastroparesis). Fortunately for me, my neuropathy symptoms were never nearly as severe as yours. I believe this is because of the large amount of IVIG that I am getting. Unfortunately, my immunologist won't increase my IVIG dosage further. He says that doing that would risk kidney damage. I hope you're symptoms improve with further IVIG treatment or other approaches.
Jon
Jeffrey,i´m courious how do you know your neuropathy is CIDP and not the diabetis?
Diabetes neuropathy is treated with ahigh dose of alpha lipoic acid.
I´m taking it with good remmiting pain, even i´m not diabetic.
My Neurologest did not take diabetes as the easy answer because the neuropathy was advancing to quickly. So, he did testing. After the nerve testing, he did blood work and foud protien in the blod. From there he ruled out cancer and MS with a bone marrow and spinal. I also have many other syptoms of CIDP that diabetic neuropathy does not explain. This includes autonomic neuropathy and extreme mussel weakness. Treatments have helped alot and made me feel almost human again. The diabetes is most likely a contributing factor.
Pablo said:
Jeffrey,i´m courious how do you know your neuropathy is CIDP and not the diabetis?
Diabetes neuropathy is treated with ahigh dose of alpha lipoic acid.
I´m taking it with good remmiting pain, even i´m not diabetic.
I was borderline type 2 diabetic for about a year after I shattered my left ankle and was in a wheelchair for 4 - 5 months, and gained toooo much weight I am now taking Metforman. I don't know what my levels are b/c I am still chicken POO to poke myself... I will in time be able to poke myself..... I also have borderline CIDP if that is possible b/c this "special" neuro said that my protine numbers were just over the top. Is that possible? He also sent letters out to my P C P and my Primary Neuro (that sent me to the "special" nuero, Oh the "special" neuro had a disease named after him - so my primary nuero told me he was a very smart man - OK is what I thought)..
I also have DDD = Degenerative Disc Disease which is very VERY painful at times, only when I want to stand for more than 5 to 10 min LOL...
Also have COPD from smoking, I quit 4 years ago, but I am taking an inhailer that helped tremendosly with my breathing BUT I did not heed the warning, I did not read the "book" of warnings that came with it, soooo now I have thrush in my mouth b/c there is something in the inhailer that gives ya thrush IF YA DON'T BRUSH YOUR TEETH AND RINSE after using the inhailer....
I have a tremmer in my right hand that I inherited from my Dad.
How I shattered this ankle - I tripped and fell on it b/c of my drop foot not to mention not being able to feel, well you all know how that is. I popped it out of socket and broke it in 3 or 4 places, which required plates and screws - Now I have really bad arthritis in it and I am looking forward at having it fused, I am not sure what that is yet...
Now to top this all off I don't think my husband and I are not going to make it after much longer - after almost 19 years. I worked for 16 almost 17 years, I do not work now/I can not work have not for about 2 or 3 yrsb/c of the mentioned above, (I was layed off from my last job and my symptoms of all this got worse). I feel that I am pretty much screwed.
OH YAH!!! I think this is very important - it is also a question...
I had a - 5 day treatment of IVIG and after those days I had a bad headache and upset stomach. I called my primary neuro and he said "we are going to hold off from any more IVIG treatments, I said ok. After a week or so maybe not that long I started peeing a little blood - that scared the snott outta me. The 3 doc's seem to agree that the IVIG may have done somthing to my kidneys - I will go to the uroloigist but I am afraid to, I know this is DUMB to hold off as I have, It is very hard to see all these doc's and have all this goiung on and NOT have the support and love and understanding that he promised me when he married me - BEFORE he married me! We went together for 2 years before getting married and we talked and talked - I was married 1 time before, he 2 times - I thought he would never lie, deceive, hurt me or turn his back on me like this ESPICALLY after sooooo long!!!!!
Sooooo The question is, has anybody pee'ed blood any time after an IVIG treatment? ....Ya don't see it in the toilet with the urine in there too -I think you all know how to find out if you are passing a little bit of blood in your urine.....
Well this was not ment to be so long, but here it is..... Any questions or comments or suggestions are all welcome. I truly do hope that I did not make an ass out of myself I really don't have much confidence left in me...
Gods Blessings,
Pauline
Pauline.
I am sorry to here about your situation, but if it helps we are here for you. As far as the rest, I to have DDD and had a lot of pain (I do not know if it is good or bad, I do not hae much back pain now). I also get the headacke and sick on the third day of treatment. They gie me somthing for the nausia and Tylenol. How quick were you getting the IVIg? They started me with a 12 hour drip to aoid kidney damage. I do not hae blood in my urine, but do get sugar in it.
With your husband (if it is prying do not answer) does he undertstand your whole situation? Hae you told him everything that is going on with your body? Do not hold anything back. Has he gone and talked with your Dr. with you. I have been lucky, my wife has been with me thru every appointment and hospital stay. We have been married almost 24 years (this Aug.). If both of you want to make it work, all I can say is to talk everything thru.
Good luck and please stay in touch
Jeffrey
Pauline said:
I was borderline type 2 diabetic for about a year after I shattered my left ankle and was in a wheelchair for 4 - 5 months, and gained toooo much weight I am now taking Metforman. I don't know what my levels are b/c I am still chicken POO to poke myself... I will in time be able to poke myself..... I also have borderline CIDP if that is possible b/c this "special" neuro said that my protine numbers were just over the top. Is that possible? He also sent letters out to my P C P and my Primary Neuro (that sent me to the "special" nuero, Oh the "special" neuro had a disease named after him - so my primary nuero told me he was a very smart man - OK is what I thought)..
I also have DDD = Degenerative Disc Disease which is very VERY painful at times, only when I want to stand for more than 5 to 10 min LOL...
Also have COPD from smoking, I quit 4 years ago, but I am taking an inhailer that helped tremendosly with my breathing BUT I did not heed the warning, I did not read the "book" of warnings that came with it, soooo now I have thrush in my mouth b/c there is something in the inhailer that gives ya thrush IF YA DON'T BRUSH YOUR TEETH AND RINSE after using the inhailer....
I have a tremmer in my right hand that I inherited from my Dad.
How I shattered this ankle - I tripped and fell on it b/c of my drop foot not to mention not being able to feel, well you all know how that is. I popped it out of socket and broke it in 3 or 4 places, which required plates and screws - Now I have really bad arthritis in it and I am looking forward at having it fused, I am not sure what that is yet...
Now to top this all off I don't think my husband and I are not going to make it after much longer - after almost 19 years. I worked for 16 almost 17 years, I do not work now/I can not work have not for about 2 or 3 yrsb/c of the mentioned above, (I was layed off from my last job and my symptoms of all this got worse). I feel that I am pretty much screwed.
OH YAH!!! I think this is very important - it is also a question...
I had a - 5 day treatment of IVIG and after those days I had a bad headache and upset stomach. I called my primary neuro and he said "we are going to hold off from any more IVIG treatments, I said ok. After a week or so maybe not that long I started peeing a little blood - that scared the snott outta me. The 3 doc's seem to agree that the IVIG may have done somthing to my kidneys - I will go to the uroloigist but I am afraid to, I know this is DUMB to hold off as I have, It is very hard to see all these doc's and have all this goiung on and NOT have the support and love and understanding that he promised me when he married me - BEFORE he married me! We went together for 2 years before getting married and we talked and talked - I was married 1 time before, he 2 times - I thought he would never lie, deceive, hurt me or turn his back on me like this ESPICALLY after sooooo long!!!!!
Sooooo The question is, has anybody pee'ed blood any time after an IVIG treatment? ....Ya don't see it in the toilet with the urine in there too -I think you all know how to find out if you are passing a little bit of blood in your urine.....
Well this was not ment to be so long, but here it is..... Any questions or comments or suggestions are all welcome. I truly do hope that I did not make an ass out of myself I really don't have much confidence left in me...
Gods Blessings,
Pauline
Hi Jeffrey,
I hope I selected the right arrow - reply to discussion - is the one I clicked on....
I hope that you had a good day today! Me? today was a better day than I have had for a while.
Thank you for replying to me, I was not sure that I would get a reply. You have DDD too> My doctors say that DDD is very common. Ya know I was not hurting in my back for quite a while, and just the couple of weeks now the back pain and burning so bad came back, nothing I can do about it except keep up on my pain meds. I am very glad to hear that your DDD is not hurting you, I hope it never comes back on you!
Your question on how I was getting a hour drip? I only had the first treatment for the initial 5 days start b/c my neuro said for me to stop. This "Special" neuro that I went to has sent suggestion of treatment to my Reg. neuro and to my PCP for me to take Celcept. It says it can cause limphoma (I think that is the word)??? No thank you, I really don't want to take that chance to get cancer too...I really think he is tossing me aside because he just told me that he is moving to California and he told me that he did not want to get me onto a long treatment b/c he will be gone in Oct. I told him congrats and good luck but I really felt that I was being thrown away. I supose that won't be the last time. Oh well
As for what is going on at home here. Yes I have tryed very hard to explain to him what is going on with my one and only body and he does NOT want to hear it - he told me that to my face. He does not want me to talk to his parents about my condition - he said they don't want to hear about it. , I don't have my parents any more to talk to them- they all say I am a drug addict - no I am not I take all my meds as perscribed...They say I have been on the pain meds to long... SHEESH!!! I wish I did not have to use them, but they don't understand since I can't discuss it with them. He has turned cruel. Yes he had to go with me to the doc's while I was in the wheelchair with my broken ankle and he decided he did not need to hear any more after coming in with me only once..
I am so glad that you have a wonderful wife. You are so blessed indeed!!! There are many people that do not want anything to do with sick people and that hurts real bad when ya have given all of your good years to your mate and then ya get this CIDP and/or a couple other things and this happens :-(
Thank you for writing to me, hope to hear from you again!
Take care & Gods Blessings to you and your family...
Pauline
One of the first tests my GP did was to rule out Diabetes. Even after getting a quite clear diagnosis from the specialist neurologist, my specialist haematologist ran additional tests to rule out other "left field" and more nasty possibilities (just in case).
That´s right, it is quite often, particularly in type 2 Diabetics, that Neuropathy is the first symptom of Diabetes.
Hi,
Yes, I too have Type 2 Diabetes but I am only taking Metformin and Glyburide for now. My PCP has mentioned that if I don't get my A1C lower, I will have to go on insulin. I was diagnosed with Diabetes about 2 years before I started having lower back pain (which was the beginning of my CIDP story).
My treatments (both IVIG and Plasmapheresis) did not affect my blood sugar readings, but not being able to be physically active has resulted in weight gain and that has affected my blood sugar readings.
Hope you're doing better.
Lindae