New guy on the block-does anyone know of help with every increasing financial costs?
AnonymousAugust 8, 2006 at 7:42 pm
I am so glad this site is here! I was given my “final” diagnosis this past January, as C.I.D.P., having gone through hell for over 3 years.
“Oh, I think you have MS”…”Oh, you are just have some strange reactions with your migraines, as everyone has migraines in different ways”…”Oh, I think you have an anxiety disorder, and I think you should see a phsychologist”…”Oh, you have Mononeuropathy Multiplex”…”Sometimes, once in a blue moon, there are instances when a doctor cannot come up with the final diagnosis, and this is one of those blue moons…I suggest you see one of the three top senior neurologists in the county.”…About 10 M.R.I.’s, 6 CAT scans, many EMG/nerve conduction tests, at least 80 blood tests, a nerve biopsy, a skin biopsy, 2 hospital stays including 1 week in the ICU as well as one lasting a month-long stay, thyroid tests and ultrasound, and a partridge in a pear tree, they finally gave me my final diagnosis of CIDP with Horner’s Syndrome, (an eye disorder that is one of the variants with CIDP).
I am so glad this website/chat room is here, as I am seeing how so many of you went through the same hell that I did, and I can relate. The worst part was when one of the doctors told me he thought I had an anxiety disorder, gave me some psychotic drugs and had a psychologist see me, as if it was all in my mind…what frustration!!!
But now I am going through the various stages of treatments, to see what is going to work.
I had the high-dose steroid treatments, of which the feeeling came back for an hour or so, then went back to the way it was, and also turned out I was allergic to the steroids and could not finish the whole treatment.
Then I went through the IViG treatments for three months, to no avail.
Now, I am coming up for the third treatment of plasmaphereses, having had 3 days per month for the past two months. The first treatment gave me a little more strength in the legs, but the second treatment did not seem to help and am now going back to the way I was.
The problem I have now, that as it has progressed, it went through all the Seral nerves, which started in my left foot and now is throughout my body.
Then it hit the motor nerves, so that I can walk within my house with chairs and walls to bounce off of, but need a whellchair for long distances.
And finally has hit my Autonomic nerves, which is the worst problems to deal with. Because of this, it has affected the nerves controlling my heart, my diaphragm which when a “flare” or “relapse” or whatever you want to call it, happens, it becomes difficult to breathe since I can’t get the diaphragm to work. My G.P. has told me that because it has affected the autonomic nerves, more is to come. I just saw my Ophthalmologist, and he told me it may be affecting the eyes and am being carefully watched. My G.P. also told me it may affect other nerves controlling different organs as well as the brain.
Ah well, as they say, “shit happens”…
But now the medical bills are mounting. Yes, I have insurance. But some things they only cover 50%. And it is one of those “50% coverage items” that is killing me in the pocket. My Pulmonologist has me on a Bi-Pap machine, that when I have a flare, I use it to get me to breathe. They now have it at the top settings, and he tells me the next stepp is going to be going on a ventilator, of which he told me I have to decide whether I want to live with a ventilator or not as he said life on a ventilator is dreadful, though I have been finding out I can live at home and still work while being on a ventilator.
But this Bi-pap machine costs me $200.00 per month! Even the doctors thought that price was astronomical, but I have no choice in this matter.
UNLESS SOME OF YOU GUYS know either some type of financial aid or free machines available, or something???
With all the other medical expenses, my cost for insurance at $500.00 per month, hospital costs for the plasmaphereses, and the bi-pap rental, I’m in a spiral downward financially. I have read others of you who have run in the constant financial drain.
On another subject, the hot weather never bothered me before I got this disease. We moved to San Diego 12 years ago from NYC, and loved it, since it is basically a temperate climate. But this year, with these odd heat spells lasting over a week, as well as the usual hottest month here being September which is coming soon, I am not doing well with the heat. It is putting me into constant “flares” or “relapses”, (what do you guys officially call them?), and I tend to “crash”, where my vital go way down with a pulse rate in the 30’s and a blood pressure of 60/30. My neurologist has me trying Mestinon, which is used for Myasthenia Gravis, but he is trying to see if this will help me during the flares to help me breathe, since this drug sends nerve impulses to the muscles to help breathe. I am seeing that it seems to make the flare not as intense, though I have to be in the bed as during the flares I have very little strength to move or talk.
ARE ANY OF YOU IN THESE FURTHER STAGES OF C.I.D.P., WHERE THE HEAT IS REACTING ON YOU THE SAME AS ME?
I have been told that CIDP is much like MS, of which heat, stress, and excercise usually causes a flare up. I talked with a Physical Therapist, who told me there are only passive excercises you should do, and to stay away from any kind of agressive activity.
Are any of you on any kind of other pills to deal with this?
I have been on Neurontin for about 2 1/2 years, Flexeril for the muscle spasms. I also have to take two tablets of Vicodin two or three times a day during this summer, as if I don’t, I have a burning sensation that makes me fell like I have a very bad sunburn all over my body, (do any of you have that as well?). And I am on a new therapy for migraines that is working VERY well-that of being on Indocin which delays occurences of the migraines to only once a month compared to 2 or 3 a week.
SO, GUYS, DO ANY OF YOU TAKE ANY OTHER MEDS THAT HELP?
I have gone on and on here, and apologize for that. Give me a shout, if any of you have some great ideas for me.
Thanks so much,
August 8, 2006 at 9:14 pm
Welcome aboard and congrats on at least having a name for your illness and knowing it is real.
For medical bills, most of us are currently facing those as well. I have called doctors and been successful in getting most of them to either decrease their balance or knock off the debt all together. I have also filed for patient financial assistence with the hospital, and they agreed to decrease my balance by 50%.
You can also file for Medical Assistence with your local public aide office.
I hope you find some relief from the pain and heat and also with your bills. I know firsthand about having medical debt and it is no fun.
Welcome to the group – take care!
AnonymousAugust 8, 2006 at 11:27 pm
I’m so glad that you’ve found this site. It’s helped me tremendously. My 4 (almost 5) year old daughter. Emily, has CIDP. The people here are great & can offer tons of info & support.
You may qualify for medicaid. You might want to look into that. I’m not sure of the requirements but I do know that they can cover medical expenses if you are unable to.
My daughter gets more fatigued in the heat & her legs tend to get a little more achy if she’s been out in the heat for too long. It doesn’t bring on a full blown relapse.
While you were on IVIG did you notice any change in your symptoms or did it stop the progression of the disease? Some people need high doses of it for it to make an impact. Emily had to have 5 consecutive doses & 2 weeks of IVIG 3 times to get her right eye to become unparalyzed (is that a word?).
I’m very sorry to hear that you went through so much BS to get diagnosed. It amazes me sometimes how dr’s can completely dismiss patiets symptoms. It took me nearly 1 month to get my daughter treated for a stomach bacteria. The dr’s just wanted to keep running tests while she was in constant pain. I was extremely frustrated & I can only imagine how you must’ve felt for all of those years.
I’m glad that you have some answers now & will be getting the treatments that you need. Keep in mind that it might take you a little longer to start to recover because your disease has progressed for so long.
AnonymousAugust 9, 2006 at 6:07 am
I’m also newly diagnosed and have been experiencing the worst of CIDP for less than a year but I also have Horner’s Syndrome and am affected by the heat. Recently in the heat wave I’ve had trouble breathing too but I have not yet had any IVIG treatment so I’m hopeful the treatments will send me way into remission. I have learned that on days when I know I have to go outside, even from my car to the office, I need to keep cool for even that short period. To that end, I put a damp bandana in the freezer and just wrap it around my neck when going outside. I also found some bandanas and baseball caps in a safety magazine at work that have those little cooling crystals in them, you just wet them down and they stay cool. I haven’t tried it yet because the cold bandana works well enough – anything to keep from getting a relapse. Financially my insurance has been keeping up with the surgeries and medications, though I only occasionally use Flexaril now, but we haven’t done anything very expensive like IVIG yet.
I’m curious about your eye problems – sometimes it seems like I have vision problems but the predominant thing I notice is the right side of face is numb and disappearing, my eye is sinking and the muscles are partially paralyzed. Do you have problems seeing when you have a flare up? Do you have it on both sides of your face? In the past two days my left side has been getting numb…
Sorry to be nosy so please don’t answer if I’m offending you but like most of us I’m searching for answers… if you will indulge me, one more question…
Regarding flare-ups or relapses – how often do they occur for you? I’ve read various reports from every few weeks, to monthly, to yearly or longer but my relapses and remissions can come and go within a few days. One day I may walk fine, albeit I’m numb, the next day barely able to crawl out of bed, and the following day only have about half the symptoms. It’s maddening on a daily basis but perhaps that’s just the nature of my body and not necessarily that I’m in a further stage.
As for that sunburn feeling – yes I’ve had that too, except that it feels like razor burn some days in places I’ve never even considered shaving. I’ve got lidocaine patches from one of my surgeries – they work well for localized areas of irritation – like if it’s just a patch on my stomach. They last a long time and I’m very sensitive to pain medications so they work well for me. For the all over sunburn feeling I take a cool bath with either baking soda, oatmeal, baby oil or a combination. I do realize it’s the nerves and not really my skin but keeping a layer of oil on my skin keeps things from rubbing directly on my skin and irritating it further.
I must say that at this point I’m no longer in a great deal of pain for which I’m grateful and I feel very sad for those of you who are in pain. I had some nerve pain earlier this year and had surgery to remove scar tissue that was trapping my peroneal nerve. The doctor said the nerve was almost cut in half from the friction but I was really only in pain for one day and an Advil and a nap took care of that. My doctors tell me I have an efficient pain killing system all on my own and don’t need much in the way of pain killers. It’s hard enough to be numb and weak but if I was in pain like that one day every day I think I’d be pretty depressed. I’m sorry for your pain and I wish I could somehow take it away.
Good luck with your financial issues, I’ll be taking notes for the future. 🙂
AnonymousAugust 10, 2006 at 3:39 pm
Welcome! I’m pretty new here too. My husband and I flew out to Arizona for probably one of our last trips- he has CIDP, an recently had his 3rd IVIG therapy. I didn’t realize how bad the heat could affect him- took 4 days to jiust get him out of bed. Also, the high altitude affects him. His mother has similar neuropathy and ended up in the ICU last year after visiting COlorado. Anyone know of altitude issues with CIDP???
As for the heat, we keep him cool as much as possible. When his feet burn- and they hurt severely all the time, just sometimes worse than others- this week we are out of pocket with out docs and meds so I got ben-gay and did a 1 hour reflexology massage on his feet- this helped a lot. Also, drinking lots of water seems to help.
We tried accupuncture- big mistake on demyelinating nerves. We tried myofascial release-which I thought would help- just a dissapointment.
Until we get home, will try increasing his steroids and klonopin- to decrease his muscle spasming.
Another question on my end- anyone have issues in airplanes??? THis has ben a challenge this summer for us too- probably as I say, our last adventure,.
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