Not really. Just drugs. Lol
Are you not interested in IVig treatments?
Very interested, just not approved because no definitive diagnosis yet. Very frustrating because mine is getting worse daily. Scary suff.
Hopefully soon for both of us! Then on to RECOVERY!!! It will soon be beach weather for us on the coast of North Carolina and I’ve lost enough weight that I can actually wear a bathing suit now , so I got to hurry and get better!!! Lol
Just an update and any input or positive thoughts would be appreciated. This is my mom! She is absolutely amazing woman who is battling this crazy disease as I type this.....since the MRI, EMG we have been on a roller coaster ride. We were set up to do IVIG treatments, she did well tolerated them ok. Even noticed some feeling in calves, big toes, and lips. A week later we were back in ER for shortness of breath. They sent us straight to hospital and admitted her. I'm thankful for that because at this point she is at one of the top hospitals in the country and her team of neuroscientist say she is not going home until she is better! That is a huge praise. So they have done several other test and another EMG and have concluded that it is CIDP and not ALS this again is a huge praise. We started Plasmapheresis on Friday. She did ok. A little nauseated and I'm not gonna lie miserable. But she's strong and wants to get better so bad. We are gonna do 5 more treatments. She has absolutely no appetite and I guess at this point it doesnt really concern the DR;s. anywho and feed back would be appreciated.
I felt the same way, when I found this group. It is a scary, lonely journey with lots of unknowns. My husband has CIDP, diagnosed 5 months ago. You have a great medical resource for your mom. She is being treated and reassessed day to day and sounds motivated and strongly committed to recovery and most importantly she has you to advocate for her. This disease is for sure the longest, rockiest marathon I have ever been on. Recovery is slow but happens, just really ,really slowly. Keep a journal. We look back weekly and highlight changes that we see more often over time than day to day.treatment for Dave seems to be getting more effective as we get to the 6 month and longer stage. We take advantage of the feeling better times to be active because the it’s an up and down kind of disease. Tolerating the treatment is so important and appetite will return. I depend on smoothies with advacado and protien supplement in small amounts and found a jello with 20 GMs of protien from Ideal Protien that tastes amazingly good and is in 1 cup amounts. Whatever he feels like eating is what we go with, even if it is Poutine fries or ice cream. Look after yourself really well and just keep repeating …it is going to get better because it will. Prayers and positive energy coming your way. Contact me anytime if I can help. Madonna
Madonna thank you so much for the needed encouragement!
What a positive headline. thanks so much. makes my day!
I started with Dr's in December for this, thinking it was just the fall that I had had in November and hurting my back that was the cause of my issues. They did xrays and an MRI, and found that I did have a bulging disk in my low back, but that the other symptoms I have did not go along with just the Bulging disk. So they dug deeper. At the time, I still had insurance and they ran me through the gauntlet in testing. EEG, EMG, Ct scans and extensive blood work as well as a spinal tap. They found my CIDP through the EMG. And it was decided with the EMG that I didn't have ALS, or MS. I don't know how they could tell, but they told me at that time that that was not what I had. The spinal tap came back clear and normal as well. My Neuro doc thought at that time that it may in fact be MMN instead of CIDP. And til this point at the beginning of May? End of April, all they had me on was Norco for pain and flexoril for spasms. Then my insurance was cut off since I was off work, and they decided to treat the CIDP. By that time though, the IVIG was not available to me because of it's huge cost, and I am not making any money. It was then they put me on prednisone for the CIDP along with Pepcid for my stomach and calcium with vitamin D because apparently the prednisone causes issues with my bones. But it took them 5 months to get down to business with actually treating me with something. I don't see honestly where the prednisone is making any difference in the CIDP per se~ but! It has dramatically changed my overall pain levels. I didn't realize how much pain I was in til it started to fade out. And that alone gave me incentive to get up and be more active. I still have numbness in both feet and legs. They still feel like they are wrapped too tight with an ace wrap, that or dipped in plaster and the plaster is drying and cracking. I still have balance issues and need a cane to walk outside. Inside I don't wear shoes and even with numb feet and legs I can still feel the floor. Go figure. My hands are weaker ( grip ) and my hands go numb up to my shoulders and I have to keep shaking them out. I still have my fingers spasm and contort in strange stiff positions and I manually pull them back and stretch them and shake them off so I can keep using them. But just relieving the joint pain has been enormous. Suffice it to say that we need more information, the doctors need more information. I insist each time I see either of my docs they share information and spread the knowledge. I want both my doctors on the same page and working together with me. And they have been great about it. We are a team together, and that empowers me in an otherwise powerless situation. In the end, hopefully, they will find something. Until then keep plugging away and get your answers and realize that like it or not... each of us is pretty much going to be a lab rat of some sort. As bad as that sounds, it's still true and facing that fact prepares us for what's to come. Makes us pay close attention to every thing we encounter and can share back with the doctors.
Updates can be found for CIDP on www.Medscape.com, since I live in Canada I don't have to worry about insurance, but what I'm trying to do is start a Canadian web site similar to this one with all the latest up to date information on it. Gary
Gary - why don't you just start a Canadian Group here. On sister networks there are a ton of geographic based groups. they're very popular and helpful to the members.
Right now I have a web designer who has volunteered his time and effort for this, but I'll talk with him about it. Gary