Cayanko said: "I am so frustrated by the inability to come up with the words or phrases I want!!"....the same happens to me in the school, a kind of dislexia, i have not before, as strong as now. I try to teach writting in the blackboard but i can just writte stupid things, misswritting words and letters. The students laugh of me.
I never tried to explain i have cidp, they would never understand.
Think we are 1/100.000 in the world, compare to MS is 1/1000 or ALS or Miastenia Gravis......so no cidp research, few cidp books (even i got some from Amazon.com), no cidp medicines (we use other diseases treatments), no psychologic support.
That's where "spell check" comes in very handy, and "yes" I've been tested for lime disease and MS way back in 2007. What I did was buy a 9" notebook with a 8 hour battery and took it with me where ever I went. That way all my notes I understood and was able to clean them up at a later time, and I think this would work for teaching as well. As far as the 1/100,000 goes there's only 360,000 people here in London, which means a support group of 4 people maybe, so I thought; "Why not connect with one of the other groups with similar symtoms?" Gary
I found other CIDP forums on the web, and facebook. But none of them seem to be run like this one. Otherwise people here writte about real facts, not like the others writting about birds and flowers....you know.
I have always been an excellent speller. Now I need to have a dictionary close by. It has been more difficult to comprehend what I am reading, I will have to read the same paragraph more than once. This started before the Meds, but I think they play a factor. When you body is in a constant battle, something has to give.
It hurts to feel like a misfit, I know, but the truth is, we are "forerunners" and there has to be those in every generation that go somewhere "first" in order to make the way easier for others in the future. I guess I will have to think about and remind myself this, ha, especially on the extra tough days:)
tcwlkr said:
Cayanko, if we told someone we had breast cancer (or as a man prostate cancer), or something "real" we would have something they knew about; tangible. But CIDP is so rare, they can't understand. I went to a new neuro muscular specialist at The Emory Clinic. He was familiar w/CIDP but not really. Had never SEEN someone with it. He questioned whether I even had it. Then I questioned whether I really have it. I have lost pretty much all of my friends and family. Doctors and pills pretty much consume my life. Yesm the island of misfits is where I feel like I belong.
Yes, the spelling thing is really a kicker when one has loved words, usage and the whole English language thing...humbling, huh? Yet, we keep on fighting, with dictionary/thesaurus, etc. in one hand, as we write about our frustrations with the other!
nancy said:
I have always been an excellent speller. Now I need to have a dictionary close by. It has been more difficult to comprehend what I am reading, I will have to read the same paragraph more than once. This started before the Meds, but I think they play a factor. When you body is in a constant battle, something has to give.
Iām hoping to help pave the way for others when I go for my Stem Cell Transplant in September. I will be #39 approximately. If they find it runs in families, Iām hoping by doing this we learn so my kids never have to go through it.
I can understand your fustration. I was afraid to put anything on the discussion board, between the harder time spelling and controling my fingers fpr typing. But I look at it this way, who cares if it helps someone out including me. Give your students a chance, this condition needs to be brought into the light. Granted most of them will not care or understand, but some might. They may end up being the one inspired to find a cure! I usually discribe it to people as being simular to MS. This helps them understand CIDP a little better. It at least gives a starting point. Try this appoach, it might help. Good luck, Jeffrey
Pablo said:
Cayanko said: "I am so frustrated by the inability to come up with the words or phrases I want!!"....the same happens to me in the school, a kind of dislexia, i have not before, as strong as now. I try to teach writting in the blackboard but i can just writte stupid things, misswritting words and letters. The students laugh of me.
I never tried to explain i have cidp, they would never understand.
Think we are 1/100.000 in the world, compare to MS is 1/1000 or ALS or Miastenia Gravis......so no cidp research, few cidp books (even i got some from Amazon.com), no cidp medicines (we use other diseases treatments), no psychologic support.
I believe this form is so good because it's not a "stitch and bitch club", like some others. I'm very glad that some one brought up "Cognitive Impairment" because now I know this is a problem connected with CIDP (in some way) and not just me. We all can consider ourselves "Pioneers" in this, but I really want to know more about is the stem cell research that is going on. Gary
Gary, I am going to do a Stem Cell Transplant in September. It is headed by Dr. Burt at Northwestern in Chicago. If you go Hematopioetic Stem Cell-MS & Autoimmune Diseases FB page. Yes, you will get a little whining but also some great comparison info on myloablative and non myloablative SCT. George Goss gives factual and thorough info. You can also go on Northwesternās Division of Immunotherapy for Autoimmune Diseases. Dr. Burt heads a NIH study on clinical trials.gov that I am going to be a part of in Sept. The protocol I am going to do is Nonmyloablative chemo. It doesnāt totally wipe out your immune system and then your own stem cells are given back. George states he is against this protocol in favor of myloablative but he has MS. I decided on less risk with still good outcomes
on remission. Mary
I have been tested several times for lymes disease, always negative. I see a neuromuscular specialist at University of Maryland who specializes in Inflammatory diseases including CIDP, and I feel confident in my diagnosis. It took 31/2 yrs to be diagnosed, and I won't bore you with the journey, but so many docs thought I was crazy or had psyche problems! I began to doubt myself about the pain and disabilities I was experiencing. Finally I found a neurologist who knew what I had but said treating it was beyond his expertise and he sent me to U of Md. Sadly my nerve damage is permanent and treatment is to keep further decline at bay. But I am thankful to know what I have now and that I have a great doctor. Cindy
kitty said:
I'm sorry to hear about both of these issues. Only 425 diagnosed cases in Canada? I'm sure that does not represent the hundreds (maybe thousands) being misdiagnosed. I was diagnosed with Fibromyalgia 20 years ago and only now understanding that it may be have been the CIDP. Both my doctor and I are almost positive that it is chronic Lyme. Even though my blood tests came back normal. Being new to this site and diagnosis I apologize if this seems like a stupid question. But have either of you been tested for Lyme or seen what I call a Lymecentric doctor (a doctor that understands its an epidemic).
Well the 425 is based on 28,000,000 population which is only 1/10th of the U.S. Canada's a big country but just not in population. I ran into the same problem with the neurologist who diagnosed me, he passed me on to an expert (if there is one) in this field. Gary
Hello thank you for this oppertunity to join in the discusion. I just spent 4 days in the hospital what the doctors thought I had a small Stroke. Findings from the CT with contrast; there is a 10mm rounded low-density focus withn the right basal ganglia likely relecting a prior lacunar infarct. There is no covincing CT evidence of acute intra or extra-axial hemorrhage or definite large vessel infarct however the diffusion weighted MRI would be more sensitive in this evqaluation. "There is a suggestion of subtle nonspecific low-density periventricular changes suspicious for microangiopathic ischemic disease. "
I ask the doctor who was doing the letting me go from the hosital she didn't know what Microangiopathic ischemic disease was? And said I would have to go to my PCP and talk to him.
I came home and I have google it...and it was interesting in that I do have smaller size veins...and how it leads you the white matter where they saw anotehr infarct? and with what they said I found it lead me to MS.
Of course I'm not sure just on my own trying to fig out what is that microangiopathic ischemic disease was.
I do have balance issues, I do have pain, I have burning on the feet, and I do have other areas that were look at before of my spine....so I am now confused.
I am still trying to get in to see these two doctors that I was again told I should see by the neuro doctor taking care of me in the hospital such as it was. (meaning he came in the morning and left in 4 min.) Who kept telling me I got to see these two doctors they were the only ones in this state who could help me. Strange I couldn't get the names from him...but I am sure I know they might be the same doctors I have try to get in to see.
I am getting worse by my body do more things that are going wrong....this is just one more thing I have happen to me...not able to talk where you could understand me during this short time I had a attack is what I call it....and wasn't able to see well...and I have some memory lost.
The hospital is now sending me starting Wed. a physical threapist to my home....
I still not sure what is wrong with me....I do have now two things that say I have problems EMG and this CT tests plus the MRI's that show delanting of my nerves....which diease I am not sure yet?
I am hopeful that I will maybe get to visit those doctors that I been refered to just not able to see them yet.
keeping my fingers cross....
but maybe it is all in the same family of dieases? I don't know...I just know that I am now having problems on both left and right sides...it comes and goes but still some of it stays all the time.
Pablo, if you go to clinicaltrials.gov and under search type in CIDP , you will find it. Itās at Northwestern Hosp. By Dr. Burt. On that page is all the criteria for inclusion/exclusion. It is not a funded study so if your insurance does not approve it,you will have to pay out of pocket. My insurance did approve it. Some have and some do not. I am currently mobile but have been in and out of a wheelchair this year. Most candidates do walk into his office. If you decide to apply let me know and I will help you through the process. I do go in Sept so it would have to be before that. Mary
I was just asking. I still can walk around, i know iĀ“m lukcy. But iĀ“m concerned about the future. I can only get azatioprine (imuran) and alpha lipoic acid with my medical care "insurance". (i live in Uruguay) Cellcept or other expensive treatments are out the insurance.
Pablo,
Many of my FB friends do use Alpha Lipoic Acid. It works for them with energy and pain. I have used Imuran. It did not work for me but has worked for others. Most are on Cellcept with success but that also did not work for me. Could you get Cellcept if Imuran does not work? Rituxan is another option if you need it. I donāt know if your medical would cover it but itās worth looking into for another option.
-buena suerte! Mary
Rituxan, Cellcept....etc.... I have to be paralized (in the wheel chair) to get it using the insurance of insurance (for disabled people, terminal cancer, etc)