Could they be wrong

Hi Willie,
The calves and hamstrings are how my 11 year old started. At first I thought it was growing pains, then a couple of weeks later, the stairs started becomming harder, but he could still do them. Then I noticed his nerf guns were getting harder for him to **** back and running was becomming labored. Buttoning his pants, or the inability to was the catalist. I would say 5-6 weeks of noticeable, very noticeable symptoms occured from start to finish. As he was 10 when it started, He may not have noticed other suttle changes because of his age that you as an adult may notice. Plus, this disease is SOOOOO… different for everyone!!!!

Have you had a ncv/emg or spinal to confirm the dx? What makes you doubt the dx (expressing they could be wrong) These would be true tools to dx cidp besides a clinical presentation. You also made a mention of ivig w/no insurance, since your son has cp, I assume he is on aid and disability, if so, is there a case worker you work with that may be able to help you? Could you apply for disability? Unfortunateley, I have to agree that unless god sends some kind of angel to you (it is possible) there would be no benefit to the hosp or doc to prescribe ivig if they are going to loose money. The sad unadulterated truth. I will pray that you get the help, and compassion that you need from your doctor. Best wishes.
Dawn Kevies mom

Hi again Willie,
It is a thought, but try calling Baxter, the makers of Gammaguard ivig. There is supposed to be this gamma assist program. Try googling gamma assist. Is there a social worker at the hospital where you had the tests done that could pull some strings or give you ideas. I have no idea how this process works and can only imagine how hard it is to deal with these disability issues. I am sorry you are having such difficulties, it is not fair! Best wishes sent your way!
Dawn Kevies mom

Hello Willie,
There’s nothing wrong with wishful thinking and hoping you don’t have this syndrome, but you probably are aware now that “something” is wrong, so if you have seen a neurologist who’s familiar with CIDP, accept that right now.

Have you tried a web site called [url]www.needymeds.com[/url] If you qualify, they will help people with no insurance pay for meds.

Also, if you own a house, you can apply for a home equity loan to cover medical expenses.

Hi guys, not to butt in, but didn’t I read in one of the posts about someone trying just SoluMedrol? And no IVIG? The cost of that is a fraction of IVIG and it might be a question that you can ask your neuro to see what he thinks. The cost of medications is just staggering, even for just regular medicines. Good luck to you and ask all the questions you want. The folks here are wonderful!

Hello again Willie,
This site might help you learn how to be your own advocate, it’s worth a try [url]www.VoiceForTheUninsured.org[/url] If you look real hard at the small tabs on the top right of this site, they have a doctor finder. Perhaps one of the doctors who joined, will work with you.

Hi Willie,

I’m so sorry to hear of your difficulties – As a caregiver of a daughter with cidp, mabe sharing a few of our experiences will help, and give you some ideas for dealing with the situation until things get better.

Feet –

My daughter didn’t walk for a year, but when she became strong enough to walk, she too stomped. The nerves to her feet were so damaged she had no control – could not pick up her toes, could not place her heel and “roll” forward on her foot to take another step. Her feet were foreign weights that had no feeling at all. Most of the work of walking was done with the thigh muscles to raise a leg, and then let it drop forward. We are about 2 1/2 years out, and she now walks with control and grace. I hope this gives you some encouragement. With you being dx in Jan, you are just now beginning on that long road to recovery – be very patient with yourself and allow your body the chance to heal. Expecting too much will set you back and delay your recovery. Also, You have your hands full; how difficult it must be for you not to be able to depend on your body when you need to care for your son. I hope you find a way to accomplish the things you need to do without pushing yourself too hard. Have you looked into a part-time aide for assistance to help with your son? Just in case you should need it for a while?

GBS/CIDP are ascending – it is a good sign that you can still bench press as much as a year ago – my daughter also had only feet/legs involved at first, but due to delays in treatment and fast, repetitive relapses, her arms, body, and eyes also became affected. These too, are restored with little residuals. Note that not everyone has that much weakness – many never progress that far – hopefully you?

Insurance –

I was a single parent putting my two daughters through college when this mess hit us. I can honestly say that ignorance is bliss, at least in my case. After the first two weeks in the hospital (emergency addmittance), and 5 days ivig, I bravely went down to the business office at the hospital planning to set up a payment plan. I had no idea what I was in for. This was before I had any idea what gbs/cidp was, and never had an opportunity to understand the chronic nature of cidp and the need for ongoing treatment. Long story short, my experience has been that finding assistance with such catastrophic debt – local/regional government and services are much more responsive than state/national. I don’t know where you live, but they (big government) take too long and the need for medical care is urgently needed to avoid long term or permanent damage. I was in shock at the time. I vowed to work as many jobs as necessary to give my daughter the care she needed. The reality is, without insurance, the bills piled up quickly, and I would never be able to pay them off. Two (plus) years out, my daughter “qualifies” for medicare, yet will not be covered until March of this year!

Make an appointment to talk to an advisor (counselor) in the billing department at the hospital. This is where I started. Eventually, I was refered to a county assistance program – without them, I cannot imagine where we would have ended up. From there, other local agencies were able to offer some assistance with labs, outside referrals, etc. Then, once I felt my daughter was doing ok, I took on more work. I was surprised when SSI acted on our behalf for a one-time-payment type thing from medicare – not sure I understand how that happened, but I was struggling, and they stepped in at the last minute and got our hospital bill paid up to date, and then “closed the books” because my daughter was not offically covered at the time. We just deal with the situation by taking each day at a time. This is not a cheap illness, and it can break even a Rockerfeller.

From my story, you can tell how unprepared I was. The moral of the story is that there is always a way – it may not seem like it at the time. The most important thing is to get the treatment you need. There will be plenty of time to deal with the paperwork and find solutions for ongoing treatment.

I hope your appointment goes well, and your doctor is understanding. And finally, I hope I have helped you put things in perspective a little – things have a way of working out, a little at a time. In a year, you will look back and be amazed at how far you have come.

best wishes,

cd

Hi Willie,
I have CIDP and have sometimes noticed that I “stomp” around the place.
I thought it might have to do with the sensory component of my CIDP (my sensory part is worse than my motor), in that, as I have reduced sensation below the knees, by applying more pressure with my feet – I am “feeling” with my feet more – which I suppose helps with my balance – which can suck at times! I can’t carry anything even a bit heavy – upstairs, I’m flat out dragging myself up – so I avoid stairs at all costs!
Some days are better than others though.
Best wishes,
Kazza 🙂

Willie, welcome to this forum. I have a few comments to add. It sounds like, thank God, you have a relatively mild case of CIDP at this time if your primary manifestations are the “stomping” gait after a while of walking and trouble carrying your son upstairs. This is good. The reason that people advocate treatment is that you want to do everything to keep it mild and limit damage and manifestations. For every person, the course is different in how fast things change, how bad they get, and what parts of the nervous system are involved. Also what you feel inside is often much, much more sensitive to the damage that what others can see or even neurologic testing can show. My neurologist says “the view is different from inside the plane than from 30,000 feet below.” Since this is a demyelinating process in which the insulating coating around the nerves is typically affected so that conduction of the signals is smaller or slower, the longer the nerves, typically the more affected they could be. So, most people start with weakness or sensory changes in the feet which have the longest nerves running to them. The stomping is called drop foot and is a slapping gait in which one has trouble raising the toes and rolling the foot as compactDisc describes.
It takes seven times as much energy to climb stairs as to walk flat (and twice as much to go down) and there is additional “work” to balance–especially if you are carrying something/someone as precious as your son and because people especially larger people are in the best of times, mechanically hard to carry (it shifts center of gravity so that the efficiency of muscle use is not optimal and if the muscles are not quite up to usual because the nerves are lapse in comminicating with them, it will show more).
Gabrielle is probably referring to the thread entitled “Steroids Better for CIDP says Dr. Parry” which was last commented on a few days ago. You can see it on the first page on the CIDP Forum or search for this title or keywords. Steroids are an acceptible treatment option. You will want to be careful to try to keep active and keep muscle strength with recoverable activity since steroids can make muscles weak. Steroids are a lot less expensive and, it seems, that pulses of steroids may tend to work better and cause less side effects.
Each person is different in how severe CIDP gets and you may not need prolonged treatment with IV IgG. Do not necessarily feel like this is going to be something that might be “required” for years. One problem with this disease is that NO ONE can reliably predict this so you have to advocate for yourself as if this is going to need to continue or continue to need steroids. Many people, especially men, are reluctant and quiet about talking about financial concerns regarding health care, but it is very important part of today’s world and you should discuss it with your doctor, but try not to make a decision about treatment based on this fact alone. You want the best possible containment of the CIDP because if you stop damage from continuing now, you limit future problems and also medical expenses. Part of the problems of this illness is that is is hard to tell exactly when ALL ongoing damage has been stopped and remains dormant because nerves heal so slowly, manifestations are altered in different situations (such as how tired you are, how steep the stairs are, etc).
WithHope for cure of these diseases.