Hi Mac,

December 20, 2009 at 7:58 am

Hey dude,

I also read your post under, “CIDP AND RELATIONSHIPS”.

I gotta get you going.

Look–I have advanced CIDP, and am dieing. But I am not in the “black hole” you seem to be in.

You are getting worse, because you are not getting treatments.
So now you have SSDI. Here in California, that automatically means you can be covered by “Medi-Cal”, of which EVERY state has it, it just goes by a different name. It is basically Medicaid–for people who are disabled, but are under 65 years of age.

Now you gotta do the red-tape bit–I did it, and have Medi-Cal. By the way, mine was handled through my “County Health Office”. Just an interview and paper work, and you get it.

THEN YOU NEED TO GET TO A NEURO NOW!!! The Medi-Cal will cover the costs. And my Medi-Cal covers ALL of my med costs, (and I take a handful of pills three times daily). You need to at least get started with the normal protocol of treatments, whether you start with IVIG, Plasmaphereses, or whatever is suggested–but you have to DO THIS NOW. And tell him you do need Cymbalta or Lyrica, to get out of your “funk”. I personally do not take any anti-depressants, BUT YOU NEED SOME RIGHT NOW.
The County people show tell you how it works–you go to a Neuro-Clinic–usually a teaching hospital or a Medical University. All covered by the state aid. It will be obvious to them that treatment is needed right away.

Once you get some treatment going, and find one that works, you at least can be cleaning the house while your wife is working. Perhaps even getting dinner ready when she gets home. Think of it this way as well–it would be of great cost if both of you were not there, to have someone babysit your daughter. So, you are a stay-at-home father, raising you young daughter.
Now, just get some treatment going, and you might find yourself doing more at home, and feeling like you are helping out more.

Pain issues–remember–I am dieing from the effects of this damn disease, and yes, I have pain. But I manage it by time. When I first get up in the morning, I pop two Vicodin. But I also take 20mg of Ritalin, which gives me energy in the morning. Around 11am-12noon, I take another 20mg of Ritalin to get me through the afternoon with energy, with 2 more Vicodin. At 4pm, I take a Marinol pill, (the pill form of Marijuana–legal in California), to help me lose my nausea and be able to eat my one meal of the day. But at 5-6pm, I also take Hydrocodone as the pain is at it’s worse. So, I eat a small meal, then hit the sack.

TREATMENT is the name of the game with you–and you’re not doing anything about it right now. At least make some calls about this. You will see things will start coming through. You want to keep your wife, and things are bad now. So start at least trying to get the treatment without cost.

If you ever want to email me, you can do so at: [email]vip-tvlrs@algxmail.com[/email]

I was orphaned at 5 years old, and had two younger brothers that we were very close, and have both died at their own hands withing the past few years. I am dieing from this CIDP.
I have a lifemate of 27 years, and we are as close as can be.
Yeah-sometimes things can be tough-but we get through it.


All my best,

Hi Mac

May 6, 2009 at 5:20 pm

Hi Mac! I think I would be finding myself another doctor and start over. Any doctor that sees you as drug seeking is going to pass it on to another doctor never getting you any help. My best advice is get your medical records with all your EMG/NCV’s and switch every doctor you have. Anything reports he has that mentions drug seeking. Don’t let the other doctors see them. Maybe then you will get the help you need. There are many non addictive drugs out there like Jim said that can help you. Maybe by seeing someone else this will help you get something done. Sounds to me like you have a non sympathetic doctor that doesn’t care if your in pain or not. I had one like that and I fired his tail! Now I am getting the help I need and thank-goodness~ LOL! At least now I am sleeping better at night knowing I have something to ease this crunch. It’s not the miracle drugs but at least they do help me! If I were in your shoes, I would be switching! Hugs
Linda H

Hi Mac

April 30, 2009 at 7:48 am

Hi Mac! It might help with the neuropathy some but for those that have a B-12 deficiency that no longer make Intrinsic Factor it would not really do that person much good. People with positive Intrinsic Factor’s require shots in the muscles because they can’t absorb the B-12 in their stomach lining. So taking a pill for them would just not help them and the B-12 would get worse. I have to take the shots every week in my muscles and the B-12 Vitamins under my tongue so it will go in my bloodstream. There are two types of B-12 deficiencies. One that can absorb but the person has a low B-12 factor and ones that can’t absorb B-12 because they no longer make the factor in their stomach lining.
This could help those that still make factor but for those that don’t it could be life threatening especially if they stopped taking the shots. But it’s worth trying for many. I after getting lupus tried many things I heard about. Herbal remedies that cost me major dollars for and they were useless. My brother in law was selling a vitamin telling me it would cure my lupus. It didn’t! So I am very skeptical about taking things that say cure!
But I have myself tried them. They just didn’t work for me! But they might work for others. Hope they do help you out and make you feel better.
I just take regular One A Day Vitamins now with Vitamin D and my B-12. And they do help some but not 100 percent!
Thanks for sharing! Hugs
Linda H


April 19, 2009 at 1:54 pm

Let’s see–because of the CIDP, I have my Primary Care Doc, my neuro, my rheumatologist who is in charge of my chemo, my pulmonologist, my urologist, my neuro-ophthalmologist, my nephrologist; all of which I see monthly or every two or three months. I have to be admitted to the Oncology Floor of my local hospital one day every month. Every few months, they schedule another test, as the CIDP invades my autonomic system, and they send me to another “gist” specialist. And I take a handful of pills three times a day.
Yeah-my finances go to my health problems, as it does for many people here on the forum. And dealing with the red tape of insurance companies, it took me 14 months of aggrivation just to get my electric wheelchair.
So, yeah-it’s not a good idea to ask people here for monetary help.
When I saw your post–I just shrugged it off…it’s over with.

The problem with what you mentioned, is that;
ONE-it is a rare disease: 7 in 100,000 people get MS, (a well-known disease and much supported for research), 2 in 100,000 get ALS, (another well-known disease because a famous baseball player had it, was the disease “Tony” had in the “Valley of the Dolls”, and is well supported; then we get to CIDP of which it is 1 in 100,000. There are many rare diseases that because they are rare–there is little support, and not a lot of research being done on it. There is a very long list with the NIH that try to get doctors/researchers to do research on rare diseases.
TWO-Did you every hear of a famous person having CIDP? Or anyone in a famous person’s family? Jerry Lewis is a famous supporter of MD. Many famous people have MS, (it was just announced a few weeks ago, Montel Williams has MS). As I mentioned above, about ALS. And many other diseases have a famous actor or actress heading a campaign about their “pet” disease. CIDP–nope–never heard ANYONE mention it…
THREE-Even when there is a special research going on for CIDP, such as the current program at Northwestern in Chicago, where they are researching using stem cell transplant for CIDP, there is NO FUNDING-not even from the government. You can be accepted into the program, but, since insurance companies will not pay on anything considered an “experimental procedure”, that means you have to have the $250,000.00 yourself, to pay for the procedure. A procedure I consider very beneficial, but only for wealthy people–very discriminating.

Unfortunately, it is a waiting game…what famous person will finally get CIDP?
I never heard of this disease until I got it. Maybe we need to shorten the tongue twister to just “Demylenating Polyneuropathy”? I think long after I’m gone, will support or knowledge of this to the public come. Even your friends and family are probably just calling it, “a rare disease MAC has…”.
…some day, it will come…