Thank you everyone!!!!!
I so appreciate the well wishes. I am so excited and happy to have the hope this treatment brings.
And I am impressed with John C’s progress. He is already out of the hospital but just got his stem cells on 7/21. Hope I get out that fast! While it is lovely in Chicago in the summer, I’m ready to be on the other side of this and headed to Boulder for a recovery time with my sister before heading home and back to work …
And there is another person here (Bill) who is 3 days ahead of me! And another coming on Sunday and another coming on Tuesday – I think Alice started a tidal wave!!! Spoke to another young man through the facebook page and, since I’ve been here and we’ve talked, he’s sent all his information off and is waiting on an appointment. Sweet.
I hope this becomes a standard protocol for CIDP after all else fails … and I hope each and everyone with this finds the treatment that works for them and kicks it into permanent remission!!!!!!
Thank you everyone…
It’s nice to know that I’m not the only one being considered for psychiatric help lol. Last night I started having arm pain, and I was so mad, because I could feel it, and I was trying to convince myself that it was “in my head” but I just couldn’t! I finally found the spot on my arm where the pain was originating and radiating from, and I pressed on it, and everything hurt worse. So I’m like, “How on earth can this be in my head? This is bogus.”
I woke up this morning feeling much better, and confident in myself, and kind of laughing at this doctor. I’m going to have the tests done, take the results, and run to a new doctor. Even if it’s not a neuro., I have an appointment scheduled with a rheumatologist next month and there’s no reason why I can’t at least give that one a shot should the results of my NCS/EMG come back normal. I’m not going to settle for “crazy” though 🙂 the only doctors that have stood by my side are at my GP’s office, and I’m thinking about writing them a little card thanking them for all of their help and support.
Julie — So true. He spent twenty minutes with me, I’ve spent a year and a half struggling.
Kristin — Your post really made me feel like I’m not alone in this. I kept wondering if anyone here in this forum had to go through what I’m going through right now, and I almost felt ashamed to come back and share what happened 🙂 I’ve been to three neurologists thusfar, but I see no reason to stop if something comes back irregular this time.
Deanop — So true! And “practicing” being the key word, right? I was actually a little discouraged even BEFORE I saw the doctor — Psychiatry came before Neurology on his little plaque hanging in the examination room. I’m like, “Great, I’ll be called crazy before I can get a straight answer!” I know that the truth will eventually come.
Dawn — Arizona may be where I go should all else fail me. Right now, however, I know I’m getting these tests done and that is what counts. I’m all over saying Adios to this doctor if things come back positive. After how he responded to me yesterday, I know that I don’t want him being a part of whatever treatment comes. If anything, I’m going to be sure to get ahold of the Arizona clinic and have them give me the number of a doctor that is going to be kind to me and listen to me. It sounds like Kevin really had a difficult time, and I pity him, being only a kid and having to try to convince everyone that something is wrong with him. Doctors really can let their ego get in the way of treating people with actual issues. It always helps me to know I’m not alone in what I’m going through, though, so thank you as always for the encouragement.
Thank you everyone!!
It really does make a difference to talk to others about this! Thank you for your kind words and advice. It’s sad, but I feel that I can only trust the advice of those who have experienced GBS. I appreciate your replies.
Is this where I respond to your posts?
Gene, I am in Houston, northern suburb, if you have any doctors on your list.
I am only taking 300mg of Neurotin at bedtime. The first time the doctor said take 2-300mg capsules at night. That made me nausous, so I took only 1-300mg pill.
Last night I took the 600mg. No nausea No difference in pain either. It sounds like I should ask the doctor to increase that 10 times!!
I am sleepy, but once I go to bed, I cannot find a comfortable position. If I stay on my left side, it starts to burn. I move to the right. It burns. I lay on my back. Burn. Stomach burn.
My other question is for my legs. I can only control the tiniest bit from my knee to my toes. The rest of my body seems to have come back after the paralysis, but from the knee down I don’t have much progress. This worries me. Of course, the rest are not at all like before, but at least I see the progress. I can’t even move my toes. Does this sound familiar to anyone?
How does recovery work? Doctor says the legs are the last part to recover. The nerve grows an inch or so a month. Is this your experience?
Thank you everyone!!!!!
Sorry it took time to check the site I worked the last three days as I was scheduled. I had IVIG last Mon and Tue so needless to say when I got home and made it up the stairs I was not about to go down again. I am also sleeping evey minute I’m not with the girls. I will try to write again tomorrow after the mediation.
Tomorrow is the day at 9:30 am. All your responses make me smile knowing that there are people that know what I am feeling physicaly and mentaly. This is just one more thing, but I figure I have gone this far I can’t stop now. I ask that God guides me and keeps me strong so they don’t see me cry. I have so much documentation, e-mail’s & letters, it has given me something to fignt for rather than fight against. The CIDP I can’t change but I don’t want them to get away with how they have been.
You would think that with great letters from customers and yes people have even written that they will always shop there with me and not go their usual places. I got the first two letters and thank you’s from the store manager. The last three I have only heard about,from the customer’s and once from the store manager, but no copies for proof. It is a very large company with piano playing all the time and great customer service, I loved the way they treated their customers, that is why I took the position. Being a new store here in San Antonio it felt like a good decision. Anyway enough of that. I pray that things go well and I will no longer have to work there and they pay me my backpay. I just am so tired of this but I have prayed that I am strong not to alow them to bully me into taking less. I have to stick to my beliefs. I am not asking for anymore that what is owed to me and a couple of years of future pay, I would have loved to work for them but now there is no future and I do not want to continue to work for a company like theirs. If the owner did nothing when I wrote him a letter explaining how I just wanted to sit, and I was in cosmetics. I told the store manager not to long ago “You know as well as I do that I have gone to the EEOC, we smile and pretend but it got so way out of hand, I just wanted to work, a chair, I don’t understand what was so hard.” She said nothing.
I figure I will need future pay because who will hire me now, cane and all. I had a job I should have been able to keep it.
SO…. Thank you all for your prayers and listening to me vent, it is good to say things to people who know, I really am sick and yet I’m still me.
Thank you everyone
I now feel reassured i am on the right track, I will take this info and waddle off to the doctors when he returns from Xmas Hols and enlighten him. As for the neuro well I have prepared a letter, actually several letters but most are not going to be sent as they were to let off steam:rolleyes: .Why couldn’t I have had some common run of the mill illness that everyone has heard of?? It would make life so much easier:o . All of you keep safe and again have a great Xmas