Support meeting Thusday Nov 5 in Linthicum MD with Dr. Larry Blum

I received a letter informing me of this support meeting. The discussion is on Disease Progression and Remission Finding your "New Normal" Dr. Blum is a CIDP patient as well as a neurologist. at the U of Md/Balto/Wash Spine and Neuroscience Center. I intend on going. If anyone has any questions that they would like to ask, I am making a list and hoping to get answers. Ethel

Meeting to be held at the Hampton Inn BWI/Baltimore

829 Elkridge Rd

Linthicum, MD 21090 Pimlico conference room

Ethel -

Could you please ask if it's true that Medicare will no longer pay for IVig under Obamacare? And if Medicare itself won't will any Medicare Supplemental Plans pay for IVig? And if so, is there a deductible. Going on Medicare this year and worried about coverage. My neuro said Medicare wants CIDP patients to use steroids instead.

Another question - I'm getting most movement back in my foot after 2 1/2 years on IVig - drop foot main manifestation of CIDP - but neuropathy pain seems to be worse. Does the neuropathy pain in your foot/feet ever go away?

Thank you.

Hi Suzeque, I received a letter from Carefirst BCBS a few years back stating that my Medicare supplemental plan will not pay for anything that medicare will not pay for. I have talked to some of my friends that are on medicare and they tell me the same thing.

Medicare definitely wants CIDP patients to use steroids. They are cheaper but they create additional problems that CIDP patients do not need to have to contend with. My doctor insisted that I be given the IVIG instead of the steroids back in 2006.

Now to your drop foot, my drop foot has never gotten better, my pain has never gone away. I have been on the roller coaster method and have progressively gotten worst. I experience more pain covering more area and then I experience recovery of those areas and then the pain progresses a little further and then recovers a little . This up and back has been going on for years.

According to the Dr. James Dyck at the Mayo Clinic and other doctors, IVIG is the medicine of choice. It does the job and has fewer side effects. Tell your neuro that you do not want to use steroids because of the side effects and be prepared to tell him what the side effects are when you tell him. Use American Associations of Neuromuscular and Electrodiagnostic Medicine 2010 discussion at the University of VA with Dr.P. James Dyck and Dr. Jennifer Tracy from the Mayo Clinic (CURR OPIN Neurol .2010 June 23:242-8 ) as your reference. Also check out his prescribed method of treatment (I call it the non- roller coaster method)

I will check out if Medicare will continue to pay for IVIG for CIDP. IVIG is used for many illnesses. I saw what government group is investigating medical cuts in medicare. I don't remember where but I believe it was in the Medicare book that came out. I will get on the internet and see if I can find it. Because on my list of things to do is to write to my congressmen about what is happening to the Care of the elderly because I am one of them and have been told that my condition is such because of my age that they will not do anything invasive to find out my problem. The result is nothing is done to make me better or comfortable including giving me what I consider to be the proper dose of IVIG to stop the progression of CIDP.

Another thing my medicare will pay for ivig treatment in the hospital but will not pay for home care treatment of CIDP, which also means that when I am debilitated enough that if I can't make it to the hospital for care of CIDP, I am out of luck.

Ethyl -

Thank you so much for all the information! When I try to press my Dr. about progress/regression, etc. he says "everyone is different" meaning that he doesn't know. I have to pick a new medical plan at work in the next couple of weeks and the one I'd been on has doubled to a $6500 deductible /out of pocket max which wouldn't be so bad except it won't last a full year for me since I have to go on Medicare mid-year. I found the podcast you referenced so I'll listen to that to see if my Dr. needs to be doing something differently. Looking forward to hearing about Dr. Blum's presentation tomorrow! Appreciate any news about this disease!

hi suzeque I am on medicare and as long as I went to the infusion center medicare paid for everything. when I went on home care medicare would not pay for the ivig Ethel

Ethel said:

hi suzeque I am on medicare and as long as I went to the infusion center medicare paid for everything. when I went on home care medicare would not pay for the ivig

ask him what makes you so different Do you have CIDP? Do you have neuropathy? Is the numbness and pain advancing? Is it receding and then advancing? Are you unable to continue (I don't want to say fatigue and I can't think of the word that you must say to describe the feeling) an activity because you are? Old age is for the birds when you can't think of the word that you want to use and must use Never tired or any other term to describe tired. I have spent almost 10 years using the wrong word and no one told me I was using the wrong word to describe what CIDP does to you.

Also check what your new choice in insurance will pay because my insurance will not pay if medicare does not pay


Ethel said:

The word is WEAK always say WEAK


Hi Suzeque, went to meeting last night. DR. Blum talked about how his health had progressed from having one condition to another. .

There were quite a few who seemed to be in the dark about CIDP and were looking for answers to what caused CIDP and how do you determine that you have CIDP. He did talk about the different treatments available for the treatment of CIDP which I thought was good for those individuals. They also wanted to know how you could tell you were in remission and I don't think he gave a clear explanation.

Didn't learn anything about CIDP that I haven't read about.

I asked the pharmaceutical rep about whether Medicare would continue to pay for IVIG and she said that it has been approved by the government as treatment for CIDP and would continue to be paid for by Medicare. At this point in time with all the changes in health coverage because of the astronomical charges for drugs and treatments, I can only say we will have to wait and see. She explained what her company had to offer if you used the products they sold. Quite a good program.

the foundation rep talked about how they are trying to improve what the foundation is doing to get government bills developed and passed and how they are trying to improve what the foundation has to offer and that they need volunteers to set up a support group in all areas.. Also trying to increase their membership. They do send out a newsletter and they do have printed pamphlets. If you have any questions I didn't answer about the meeting, let me know. Ethel