I don't know why? Right now I am fighting for the right to even see a Neuro doctor..yes for over a year I haven't been able to see one..unless I could pay for one..even tho I have two insurances...that is the problem being on a fix income...now makes me poor...so I think the unthinkable is already here...I've been chosen to not get help. I believe this with all my heart...what did I do to hurt these people? I don't know...so for me it's even hard to get med's. Yes, but I just was able to get my med's as long as they approve...nothing to write home to mom about med's.
I have pain, my feet are on fire all the time...so much so it is hard to get to sleep now. I have cramping so bad I can't sleep sometimes for a while..I take something over the counter so i can sleep. I have those stockings invisable kinds that go up and down...I only fall if I am not good at watching where I put my feet. I did have a big fall back in Aug. So been extra careful now.
I dont' know for sure what any more I have...I kind of never got finish with any of the tests they stop as they found the polyneuropathy...and didn't go further. NO doctor in this town will see me even for anything that takes a speicalists.
I had a stoke in July and can't get a test done to see if my heart is spitting out blood clots because of all the hoops I need to get it done and the hospital plans my insurance isn't on..oh yeah I got cancel off my one insurance...but just on another one who knows any more which is good or bad? I sure don't.
Right now I am on hold...been on hold for over a year for the neuropathy, and since july for the stoke. what else is next...which one will kill me first?
I am really telling you the truth. please beleive me....I am on both medicare and medicade....I live in AZ.
but I won't tell you any more...maybe that is why I am black ball? or on that unspoken death squad
I agree with the individual who suggests keep looking for a diagnosis as CIDP infers there are nerve conduction issues. As for plasmapheresis, it has helped me significantly.
This treatment is a plasma exchange treatment. One is hooked up to a machine which extracts the blood, separates out the plasma and replaces the plasma with a synthetic and/or actual blood product plasma and the blood is returned into the body. For me, this takes about 2-2 1/2 hours. When I first started, I had 3 treatments the first week - M W F and the following week Tues / Thurs. Since then, I'm down to 1 treatment a week for the past month and am now attempting to make it every two weeks.
According to my neurologists, Plasma Exchange is not a cure. It only addresses the symptoms of CIDP. Meanwhile, I've started on Prednisone and an Immune Suppressant drug to start addressing the antibodies which are attacking my immune system. Jury is still out on the Prednisone and Immune suppressant - too soon to tell.
The reason I am on Plasmapheresis is that after 6 months of IVIG treatments, they no longer worked or helped my symptoms. From a patient point of view - I'd take the IVIG treatment over the Phasma from a discomforrt level perspective.
I too have Lewis-Sumner Variant CIDP. I've only been suffering since '99, finally correctly dx'd this past July. I'm currently on IVIG, and I can't take Steroids (Type II Diabetes) and I've already been told "NO" for Plasmapheresis, at least while I'm still active duty. The IVIG was GREAT at first, but I think the Neuro needs to shorten the time between treatments. It's always good to find another LSV/LSS CIDPer, since we have a rare form of a rare disease! Counting me, you're the third LSV CIDPer I've found/met online.
"Big Daddy" Q
YBridge said:
I have Lewis-Sumner Syndrome (as my doc says a "rare variant of CIDP"). I tried IVIG, felt good, but my disease was progressing, then did IV Prednisone, had an allergic reaction, moved on to Plasma Exchange. I had 5 treatments and I feel better then I have in years (I've been dealing with this for 30 years, just correctly diagnosed at the beginning of this year!). I felt better after the 4th treatment and very good after the last one. I have regained my balance, not as much pain and so much more energy. Since this is my first experience with this, I have no idea how long it will last, I am starting my third week of feeling well. Hope this was some encouragement to you.
I don't know what I would have done without insurance. My neuro is a private doctor, and I have tricare. Took one look at bill from a week of IVIG and thought I would pass out. It was a good thing my catastrophic cap was already met. I will have to pay out of pocket to along with insurance to get to a major center to look at other treatments though. My neurologist is won't let me do any more IVIG after the clotting episode from the frist round. Unfortunately I have to wait for my retirement to be firnalized to in order to be able to afford to get travel. He also won't clear me to work.
Where are you stationed that they sent you to a private Neuro?!? My docs aren't keen on me working/travelling, etc., but when one is stationed in HI, they don't get a choice. If your Doc has dropped the "work forbidden" on you, have you looked into applying for SSD? You can still get SSD with your Navy pay while you wait on retirement. Mind if I ask what you're %ages from DoD/VA are, or are you still waiting on your Board findings?
David "Big Daddy" Qberry
bteeter said:
I don't know what I would have done without insurance. My neuro is a private doctor, and I have tricare. Took one look at bill from a week of IVIG and thought I would pass out. It was a good thing my catastrophic cap was already met. I will have to pay out of pocket to along with insurance to get to a major center to look at other treatments though. My neurologist is won't let me do any more IVIG after the clotting episode from the frist round. Unfortunately I have to wait for my retirement to be firnalized to in order to be able to afford to get travel. He also won't clear me to work.
FIRST OF ALL THANK YOU FOR YOUR SERVICE. Retired, and VA docs disagree with private docs dx. VA told me I had nothing wrong for 10 yrs. I needed to go outside of the system to get the diagnosis. Finally, in 2009 Dr. Lutton took one look at my legs and the first words out of his mouth were you have neuropathy. Then the tests started, and the diagnosis. The problem is that as good as my Dr. is I don't think that he fully understand this disease. The VA does not want to do any further testing and the only thing they have looked at are the emg's, and they will not refer me to specialty clinics. My first round of IVIG I had 5 days inpatient a bottle a day through a PIC line. The following monday I was back in the hospital with a DVT in the shoulder around the pic line and multiple emboli in the lungs. Spent another week in the hospital. Had a TIA on year later fully recovered, lots of falls, reduced cognitive, and havn't worked since Feb 2012. Live off of VA service connected disability.
It is just the neuro. I wouldn't trade my PCP nor my Pulmonary Dr., and I prefer being inpatient at VA because they I feel they give better care. Once I get to a specialty clinic and can possibily come up with another treatment regimen I will probably even be able to get the treatments administered through the VA.
My private neuro is the one who wrote the paperwork for wheel chair, and the VA is providing it. I took the paperwork to my PCP and she put it in the system.
Trust me I won't let one iritating doctor in the system give me a bad attitude. This hospital is awesome and I make sure every vet I run into knows to make contact and get into the system.
I was medically retired in 92 after serving six years in the Navy. 30%dod/and 100% VA If you leave with at least 30% prior to twenty years service you will leave with blue ID card and maintain all priveleges of a retiree. base/px/com/medical for you and your dependents.
Big Daddy Qberry said:
bteeter,
Where are you stationed that they sent you to a private Neuro?!? My docs aren't keen on me working/travelling, etc., but when one is stationed in HI, they don't get a choice. If your Doc has dropped the "work forbidden" on you, have you looked into applying for SSD? You can still get SSD with your Navy pay while you wait on retirement. Mind if I ask what you're %ages from DoD/VA are, or are you still waiting on your Board findings?
David "Big Daddy" Qberry
bteeter said:
I don't know what I would have done without insurance. My neuro is a private doctor, and I have tricare. Took one look at bill from a week of IVIG and thought I would pass out. It was a good thing my catastrophic cap was already met. I will have to pay out of pocket to along with insurance to get to a major center to look at other treatments though. My neurologist is won't let me do any more IVIG after the clotting episode from the frist round. Unfortunately I have to wait for my retirement to be firnalized to in order to be able to afford to get travel. He also won't clear me to work.
Oh, I'm WAY beyond that. I went over 21 years last April. I had to fight the Navy PEB though. They initially gave me 50%, and I was going "WTF?!?" So I challenged it and they came back DoD 90%/VA 100%. The new system (Interdepartmental Disability Evaluation System, or IDES) rates you for BOTH DoD & VA while you're still Active Duty.
bteeter said:
I was medically retired in 92 after serving six years in the Navy. 30%dod/and 100% VA If you leave with at least 30% prior to twenty years service you will leave with blue ID card and maintain all privileges of a retiree. base/px/com/medical for you and your dependents.