feeling hopeless and helpless
AnonymousJanuary 16, 2007 at 4:06 pm
Hi I’m Gloria and I’m new to the forum. I was diagnosed with CIDP last August , after 15 months of not knowing what was going on. Since I did not have any insurance and did not qualify for any government or hospital programs I could not get the tests that I needed. I did receive my SSD Oct. 2005 so I will be eligible for medicare this October. My ob/gyn found a medical school friend that is a neurologist and he agreed to see me pro bono. My dr conducted a nerve conduction test and said with all my symptoms the only thing left was CIDP. I have been in a wheelchair since May 2005, I am able to use my walker for short distances. I am also an insulin dependent type 2 diabetic. In Feb 2005 while I still had a job and insurance I was diagnosed with diabetic neurpathy, had ct scans and mris and all the dr’s found were 2 herniated discs. I had a leep done on my cervix to remove some pre cancerous cells on Mar 31, 2005 within a week I was very weak, 3 weeks later I was using a walker and 6 weeks later I was in a wheelchair after several weeks of stumbling and falling while trying to use a walker. I have made tremenous progress without treatments and from what I have read in this forum I’m not so sure the results of the treatments that other ppl have had is worth the expense and pain. I even took some toddler steps this weekend and am trying to become less dependent on my wheelchair. Would appreciate any comments or suggestions to help me progress further until I can get help from dr’s.
AnonymousJanuary 16, 2007 at 4:31 pm
Welcome to this forum and I hope you find some comfort here that you are not alone. We all have ups and downs and we manage to work thru them at our own pace. I found so many possitive things in your post showing you have Hope and Patience and are thinking thru this whole process. We all have shared those experiences and many of the ones here have multiple things they are dealing with. You will be a great addition to our family. I know you have already showed me to not give up and accept the level that I am in and you might have to slide back to using a cane or a walker or a wheelchair but you work forward to taking those small steps to reach for that independance. Please keep posting and using your possitive method of getting thru all the things that life throws at us. Wouldn’t it be nice if there was no paperwork to do to get what we need. You have accomplished alot to get yourself assistance.
AnonymousJanuary 16, 2007 at 5:03 pm
Hi Gloria – don’t give up!! This forum is great for getting info or just connecting with other CIDPers! You are on the right track in ruling things out. It took me 7 months to finally get into a neuro and she IMMEDIATELY recognized CIDP. I have had remarkable results from IVIG, prednisone didn’t do it for me. I would recommend you try the IVIG if you possibly could – I, too, was unable to walk or use my hands when I went into hospital for 5 day treatment. Also, had broken my leg because of the leg weakness (I went down like a stone). After 2 days of IVIG I could feel my fingertips and the weakness in my legs began to subside. Although I was in a “walking” cast, strength in my limbs was almost normal by the 8th or 9th day. This lasted for almost 2 months and symptoms started to return. After an outpatient 5 day IVIG in December, I am even better than the first session. My neuro and I are going to try a “booster” shot of 1-2 IVIG treatments in late January/early February to see if this extends the effects. I cannot tell you how much the IVIG relieves the “hopeless and helpless” feelings. It makes me feel almost normal, although I am always checking to make sure I am not symptomatic (being able to snap my fingers is a BIG test). I know this doesn’t solve your financial problem, but maybe someone can suggest how to go about getting the IVIG at a discounted price. But, DON’T GIVE UP! There are treatments that can help! Good luck and best of health.
AnonymousJanuary 16, 2007 at 5:46 pm
I would just like to welcome you to the forum, your courage & determination are just remarkable. I came down with a very severe case of progressive CIDP very rapidly in the spring of 2002, & have been battling back ever since. I spent 2 1/2 years in a power wheelchair, with almost no use of my hands. Because I had the progressive form as opposed to the relapsing/remitting form, I was refractory to all of the standard treatments, such as IVIG, plaspheresis, steroids, etc. I finally had to resort to chemotherapy infusions after 8 months of still declining. Since the summer of 2004 I began to walk, first with a walker, then a few months later two canes, then just one cane. Around the house I walk with nothing. I have most of the use of my hands back as well.
You say you will be eligible for medicre in October. In that case I would definitely at least give IVIG or PP a try. You have nothing to lose. Would a cancer patient say no to chemotherapy just because they had no insurance? I just want you to have the best quality of life that you can possibly have with CIDP. Also, I know that there are people on this forum who know about getting IVIG for free, as well as other meds.
You have definitely come to the right place for support, as well as a great place to meet friends. In our vast pool of members we also have a lot of expertise about CIDP. Please post often for support & with any questions you might have. Again, WELCOME!!!
AnonymousJanuary 16, 2007 at 6:27 pm
Like the others are telling you, DON’T GIVE UP!!! we have to tell each other that from time to time!
I just finished my first round of IVIG!!! I feel like a proud parent. I feel alittle better. Hang in there. Take baby steps. I know that is hard sometimes, it seems the world gives us big things so fast but we can slow everything down to fit our days (good and bad) Just take baby steps!! Take time for yourself, relax, read a book, take a nap or watch a movie. I enjoy when i take the moments AWAY from my problems even if it is just for an hour or so!
You will find the ppl on here are the best! any question, and i have had a few. so pls keep us posted and talk all you want.
best of luck to you!!!!!
AnonymousJanuary 17, 2007 at 11:13 am
Welcome to your new family, where we feel what you feel. Just remember, that we always have hope. I believe that 100%. If you can make it possible, DO start IVIG treatments as soon as you can. Try this web site to see if they can help you with cost of medications, it’s called needymeds and it’s a dot com. Start writing in a diary so that you can see how you are doing and what kind of patterns you are setting. When you take those “baby steps”, have a “plan of action” about what you’d do to get yourself up if you fell, especially if you’re alone. If you’ll tell us where you live, we might even be able to find a member who lives near you.
AnonymousJanuary 17, 2007 at 11:29 am
thanks so much for the info i will check out the website. i always make sure my husband is with me before i attempt to walk, im too unbalanced to try it while im home alone. i just want to say it is so nice to have ppl that can relate to my condition to talk to. i live in the southeast part of tennessee just north of chattanooga. it would be wonderful to have someone close by to talk to but right now i am just thankful for all u guys and gals that can talk to me and encourage me 🙂
You must be logged in to reply to this topic.