Hi True, I know the requirements are that all other treatments have to fail. I think the San Fran cop had to fit the requirements & she still had to pay so I think you do have to pay. Bummer. If I have to, I will sell my house. I am waiting for the trial results to come out in 2013 to see the effects on everyone in the trial. They have to knock out your immune system with chemo & then rebuild it through stem cells. It is very dangerous & I believe 2 older patients died. I will post anything I find out. The hope is that it will be so promising that insurance will start paying. Be well. Jo
I have been referred to UT Southwestern and I am looking forward to going. I am so tired of test after test and I am running out of days off from work. I really hope I can go there they can poke me and do all the test they want in a day then let me know what’s going on. I hear they are the best place you can go in the DFW area.
Doggman you are my hero because my emg test with the pins went........daaaaaaaaaaaaaaaaaaaaaa nothing
and they can't fig it out.....yes I can feel on my skin, but not in the muscels......they still are saying at the hospital that Im normal...ok I'm normal but my emg shouldn't say I am normal...there is something wrong...I can't feel on certain parts of my leg or tummy and arms and hands....it depends on where they touch me!!!!!!!!!!!!!!!!!!!!!!!!!!
Yes parts do feel.........
But how do I go to a doctor as you did to find out what it is is it really cidp? or what?????
I am so thankful for you all....I see myself and I encourage to go and keep finding // or at least when my medicare kicks in, in june. Right now I have to wait it out for 3 months for insurance.
Our state sucks when you need medical insurance....whatever.
again thank you Doggman for YOUR answer you gave...it cover me....so well.
Ruth H.
O M G I'm driving my husband carzy with my twitching.......I have hands that can't stay still, my left foot goes like a motor just recently. The doctors won't look at me....my husband complains to them....they don't even speak.
I tell my husband it's nerves....lol so funny... I look when it goes crazy twitching.
And the doctors that don't know can't speak.
what a world we live in.
I hope someday sooner then later I will find someone that knows what is wrong...do a spinal test or whatever, do a Gene test....something....
please
ruth h
This Brit who lives in Australia is about to under go SCT in Chicago as part of a trial and this is the link to his blog http://shakesandstones.blogspot.com
Doggymama said:
Just FYI…I researched stem cell replacement trial being done @ North Western in Boston. The results will be out in 2014. oThey will do the experimental procedure if all other treatments have failed. I read that if your insurance pays, it will cost them over $300,000. If insurance will not cover, it will cost you personally $100,000 just for the surgery. That dies NOT include the 3 month necessary hospital stay or the extensive chemo treatments that knock out your immune system. I think it will cost about $140,000 total. I don’t know about you guys, but that is so far out of my reach, it might as well be offered on the moon. One woman who had it was a San Francisco police officer and they held fund raisers for her to help cover the costs. She has been doing well for over a year. It’s fascinating because it can really offer a cure! I believe she is now suing the police department and the insurance company. I hope she wins.
Hi Ruth, I am. Not sure if you were thanking me, Doggymama orsomeone else. If me, I am glad I helped. In answer to your question, my second doctor said that the CIDP may not have shown in the first EMG the first neuro did. Not sure if I believe her. I don’t think many doctors have seen this disease first hand so they don’t know what they are looking at. If you tell me where you live, city and state, I will try to find you a neuro muscular specialist who treats CIDP. They will know right away if you have it. I hate to see you wait three months though. Is that set in stone or do you have other insurance you can go through. The treatments help the most when they are given within 18 months of the onset of your symptoms. Please let me know and I will help you all I can. Be at peace, we are all here for you. Jo
ruthie4bearz said:
Doggman you are my hero because my emg test with the pins went…daaaaaaaaaaaaaaaaaaaaaa nothing
and they can’t fig it out…yes I can feel on my skin, but not in the muscels…they still are saying at the hospital that Im normal…ok I’m normal but my emg shouldn’t say I am normal…there is something wrong…I can’t feel on certain parts of my leg or tummy and arms and hands…it depends on where they touch me!!!
Yes parts do feel…
But how do I go to a doctor as you did to find out what it is is it really cidp? or what???
I am so thankful for you all…I see myself and I encourage to go and keep finding // or at least when my medicare kicks in, in june. Right now I have to wait it out for 3 months for insurance.
Our state sucks when you need medical insurance…whatever.
again thank you Doggman for YOUR answer you gave…it cover me…so well.
Ruth H.
Ruth, have they checked you for Parkinsons as well? Jo
ruthie4bearz said:
O M G I’m driving my husband carzy with my twitching…I have hands that can’t stay still, my left foot goes like a motor just recently. The doctors won’t look at me…my husband complains to them…they don’t even speak.
I tell my husband it’s nerves…lol so funny… I look when it goes crazy twitching.
And the doctors that don’t know can’t speak.what a world we live in.
I hope someday sooner then later I will find someone that knows what is wrong…do a spinal test or whatever, do a Gene test…something…
please
ruth h
I have NOT been told I have CIDP, but told by my first Neuro doctor I had with the EMG testing that I have Serve Sensory Polyneuropathy. that there was somthing I thought he said plastic? or what I think I heard. I ask him several times what he said....and repeated plastic? I am not sure what that means?
I have try several med's and had serve reactions....I only take Predisone for my copd. that's right I have several things with my health going on.
I have some of the lists of things that go along with CiDP.....
But my Neuro heard of the IVIG threapy, but didn't want to do it. then he keeps changing his ideas.
He did tons of MRI's on me...and I have several things going on with my verbra's in my back...including soscolis (S) shape spine.
I have a cyst in my brain probably since birth....it has grown over this past year and he said it could of cause some of my problems with my left side of my body...but I tested with the EMG worse on my right side.
I was told I do have delanting of my nerves. I have for years before this hot spots on my face and when my neuro stuck me with something sharp on parts upper areas like my face I didn't feel it. It is hit and miss where I feel or Don't feel.
Now my Neuro doctor has told me he is finish with me.....I have to find a new doctor (Neuro) I am waiting for my new health insurnace kicks in. Then I hope the next doctor will do something to help me with my leg pains and my feet and other like my hand hurts so bad that I am just on pain med's only.
Thank you for taking the time to read my post.
I hope that you all are feeling better today.
God Bless each of you.
ruthie H.
Ruthie,
I read your posts, I'm sorry to hear about your troubles. The "plastic" that he mentioned...was it paraneoplastic syndrome? This sometimes happens with people who have a tumor or cancer in that the immune system repsonse that breaks down the cancer or tumor will attack the nerves as well, causing numbness, tingling etc. If you don't have an official CIDP diagnosis the insurance company probably can't tell you if they will cover it or not because it depends. The FDA (food and drug administration) only approved IVIg for certain disorders, CIDP being one. If it's not approved, then the insurance company considers it "experimental" and not medically necessary which means they will likely deny it. You should check with your doctor about a diagnosis and see what the treatment is. If its recommended to do IVIg then they can help getting it approved by the insurance company. Hope this helps...
OK I don't know what that doctor meant by Plastic????? My husband goes to all my apts he heard him say it also, my husband ask him again later on what he meant....he never answer us. He repeats the word "plastic". YOU are the first person no matter how I try to look it up with Polyneuropathy I couldn't find it?????
I get since 2008 skin cancer. Way before I was diagnose with anything including the copd. the skin cancer I get so far isn't dealy I am not able to spell it out. Oh that is my learning disability I've live with forever. I don't write well it doesn't speak to me how I really can speak. LOL sunny how I look with the way I write. But true.
So when you said cancer the only one I know for sure of is my skin cancer from damage I got as a kid when I would get sunburns. Boy I should oflisten to my family and freinds about putting something on so I wouldn't burn. I was very fair skin.
Well back to Plastic I have no idea. I purchase health insurance thru the retirement system here in AZ. Because I work for a school district and also bought long term insurance while working....the school paid for short term, I check off the box for everything. Which in my case is a God Sent I did. So because I am not aloud to work and they won't let me I am now on the long term disability. I know a mouth ful said.
Well to make this easy, I get to buy a insurance thru retirement system where it's like working.....you get better stuff and suppose to be less in costs. Which looking around it is....but still cost a lot.
OK MY HUSBAND WHICH I MADE READ SOME OF THE POSTS HERE....SAID I LOOK LIKE YOU ALL...IN THAT MY SYTOMS MATCH MOST OR NOT ALL OF YOURS. My husband is convience that I do have this CIDP...and is talking to my GP which is the only doctor I have now.
OK I called the International GPS/CIDP back in PA talk to a lady on the phone over a week ago...still waiting for information she said she was sending??? still waiting. She told or gave me name of a doctor and ph number.
I call..........and their asst/recp. said they need all my records first they look thru them and "IF" then they make a discision if they want to see me. OH great huh? And at the same time they said they were booking apts at the end of April. So I haven't done it yet. Why maybe mostly wanted to see if I was going to get this insurance frist. Second waiting to see what the information this lady was sending to me was? And Thrid I am scared.
Why because so far I have bad luck. I guess it is hard for me to be told again.....they don't know or think it is something else....
I feel when they don't know something they make it out to be "my" fault....or worse . I am tired.
So I given up a bit....maybe just depressed. I don't know. but last night my left leg was so swollen up so tight it was hard to see my ankle from my leg and foot....and hard to walk. I even gone so far right now.....to try to think mabe they are right it's in my thinking...So I try to do the things I not able and get hurt trying....
I wish they knew what they do to people with hope is to turn it agains them. There is no hope I was told last June 2011 by that one Neuro doctor who has since recended everything he said....and now messes up what he did tell us.
to NORMAL.......how do they get away with saying one thing and then writing something else? I do hare the org. report with the scales etc he had to show what my legs did.
I guess he is afaird....is my only answer?????
So sorry to bug you all.........but for you that took 10 years to find an answer do I really have 10 years? I'm63 you know. I have copd and I never smoke...but I have parts of my lungs that don't open up. My lung doctor thinks this poly thing is effecting my lungs. But they all disagee with each other.
Now I can't see a doctor at all.....I have no money to spend. I paid the rent, I paid the ults, and car payments on what I get...in June I loose my long term care insurance. They are trying to get reports from all the doctors I seen.....she included me in a few days ago it don't like they will declair me pernutely (mis spell) handicap. So they wil be stopping that money then. Not unless one of these doctors will step up to what they did tell me like my Neuro doctor? Oh well just another strike.
I written way to much............and I'm sorry if you are reading........I am depressed I guess right now.
NO I only have what I have and I live in pain and swelling and not being able to walk well.....I have breathing issues and they now call all my pain degentive arthrits (orth type) so my body doesn't show them nothing.
I am hoping........
sorry
ruthie h
Ruthie,
Don't give up...the doctors make you feel like it's your fault when they don't know what it is. In my case I developed CIDP while pregnant with my first child. The whole time my hands and feet were going numb and increadibly painful I was told it was fluid retention and that it would go away after the baby was born. I kept complaining of the pain and they told me that I "was very symptomatic even though the swelling is minimal", like I was being a drama queen and I should just take it!! After the baby was born I had another slew of symptoms and if I had waited for it go away like my first doctor said then I would still be waiting! I took it upon myself to go to an orthopedist who took one look at me and said this was a neurological issues and the road to CIDP began. I have a 4 month old baby and am trying to keep working full time which has been hard with hands and feet that don't work well...
I'm not a doctor but the plastic thing he keeps mentioning could be paraneoplastic syndrome which can produce very similar symptoms. You mentioned a cyst in your brain? I wonder if this is what they are talking about. As far as the center looking over your records and deciding if they will see you, that's how they all work. They have to get a referral from your doctor or even better a neurologist first and look over the records to see if it fits into their area since these centers are very specialized in the disorders they work with. Keep fighting and trying to get a diagnosis, try not to let the depression get the best of you:)
ruthie4bearz said:
OK I don't know what that doctor meant by Plastic????? My husband goes to all my apts he heard him say it also, my husband ask him again later on what he meant....he never answer us. He repeats the word "plastic". YOU are the first person no matter how I try to look it up with Polyneuropathy I couldn't find it?????
I get since 2008 skin cancer. Way before I was diagnose with anything including the copd. the skin cancer I get so far isn't dealy I am not able to spell it out. Oh that is my learning disability I've live with forever. I don't write well it doesn't speak to me how I really can speak. LOL sunny how I look with the way I write. But true.
So when you said cancer the only one I know for sure of is my skin cancer from damage I got as a kid when I would get sunburns. Boy I should oflisten to my family and freinds about putting something on so I wouldn't burn. I was very fair skin.
Well back to Plastic I have no idea. I purchase health insurance thru the retirement system here in AZ. Because I work for a school district and also bought long term insurance while working....the school paid for short term, I check off the box for everything. Which in my case is a God Sent I did. So because I am not aloud to work and they won't let me I am now on the long term disability. I know a mouth ful said.
Well to make this easy, I get to buy a insurance thru retirement system where it's like working.....you get better stuff and suppose to be less in costs. Which looking around it is....but still cost a lot.
OK MY HUSBAND WHICH I MADE READ SOME OF THE POSTS HERE....SAID I LOOK LIKE YOU ALL...IN THAT MY SYTOMS MATCH MOST OR NOT ALL OF YOURS. My husband is convience that I do have this CIDP...and is talking to my GP which is the only doctor I have now.
OK I called the International GPS/CIDP back in PA talk to a lady on the phone over a week ago...still waiting for information she said she was sending??? still waiting. She told or gave me name of a doctor and ph number.
I call..........and their asst/recp. said they need all my records first they look thru them and "IF" then they make a discision if they want to see me. OH great huh? And at the same time they said they were booking apts at the end of April. So I haven't done it yet. Why maybe mostly wanted to see if I was going to get this insurance frist. Second waiting to see what the information this lady was sending to me was? And Thrid I am scared.
Why because so far I have bad luck. I guess it is hard for me to be told again.....they don't know or think it is something else....
I feel when they don't know something they make it out to be "my" fault....or worse . I am tired.
So I given up a bit....maybe just depressed. I don't know. but last night my left leg was so swollen up so tight it was hard to see my ankle from my leg and foot....and hard to walk. I even gone so far right now.....to try to think mabe they are right it's in my thinking...So I try to do the things I not able and get hurt trying....
I wish they knew what they do to people with hope is to turn it agains them. There is no hope I was told last June 2011 by that one Neuro doctor who has since recended everything he said....and now messes up what he did tell us.
to NORMAL.......how do they get away with saying one thing and then writing something else? I do hare the org. report with the scales etc he had to show what my legs did.
I guess he is afaird....is my only answer?????
So sorry to bug you all.........but for you that took 10 years to find an answer do I really have 10 years? I'm63 you know. I have copd and I never smoke...but I have parts of my lungs that don't open up. My lung doctor thinks this poly thing is effecting my lungs. But they all disagee with each other.
Now I can't see a doctor at all.....I have no money to spend. I paid the rent, I paid the ults, and car payments on what I get...in June I loose my long term care insurance. They are trying to get reports from all the doctors I seen.....she included me in a few days ago it don't like they will declair me pernutely (mis spell) handicap. So they wil be stopping that money then. Not unless one of these doctors will step up to what they did tell me like my Neuro doctor? Oh well just another strike.
I written way to much............and I'm sorry if you are reading........I am depressed I guess right now.
NO I only have what I have and I live in pain and swelling and not being able to walk well.....I have breathing issues and they now call all my pain degentive arthrits (orth type) so my body doesn't show them nothing.
I am hoping........
sorry
ruthie h
Thank you thank you for all you ideas and efforts on helping me I am very very greatful.
I really can't know anything right now if at all. I am waiting for my insurance so I can once again try going to doctors.
I on hold for now. I dont' know if I have what you all have........it's just I have some of your things you all discribe time to time that makes me think I am.
Also because there wasn't a place for Sensory Polyneuropathy alone I hook on to you all.....I have learn a lot from you all that you all have help me greatly.
I am feeling better today??? I don't understand it.....first I feel like death warm over, then I feel ok, it is so weird.
I think I will leave you alone and wait until I see a doctor and he says what it is really....I just wanted to thank you from my heart.
I know there are you out there after watching vedios both from here and on youtub and then again on facebook...that made my little pains nothing.......to compair to all the ones I watch....I felt so sadden that they all had so much pain and disability...I feel for them more then anyone can.
I am truely sorry for all of your problems....I feel like mind are very small.
So I leave here now knowing there are groups that can support you and others to help.
I will wait for now.
thank you again.
for everything
you are great.
bye now.
ruthie h.