Dear Roxie 2007:
I just joined the community and am reading through some threads. I have been thoroughly tested for my neuropathy and have been told that I have CIDP with some demyelination. So I was advised that IVIG would be an appropriate therapy. I made my applications for coverage and now find out that each IVIG costs around $6,000.00 and that I will have to pay $2,000.00 of that amount. If I am to have these treatments once per month for a year that is a hefty sum that I cannot afford from my income. I have the MedicareRx coverage through AARP and IVIG is considered a Tier 4 drug and I have to co-pay for 1/3 of the cost.

So my questions are whether you or anyone else with CIDP 1) can confirm the efficacy of IVIG so I can decide if it really is worthwhile, and 2) has found a way for Medicare and Medicare Rx to cover these treatments. Thanks.

HI Mindmatter!
Welcome to our great forum here.
I am one of the lucky ones as far as IVIG is concerned. I've maxed out my Aetna insurance the first cpl months of this year in the search of where my pain was coming from. So after we discovered I had PN and my dr. recommended IVIG Aetna is fully covering the cost...which mine is $8,888 a week!! Outrageous!!...oh plus the nurse fees and other tag on costs.
My insurance gets re issued Jan. 1 and all my co pays and co insurance costs start over and I'll be where you are then.....and I'm not looking forward to going in debt for my treatments.
I know there's lots of others on this site who get IVIG infusions.......Hey gang, can you help this person with the IVIG questions??? Thank you!!
I hope you can figure out a way to get the infusions because they are helping me. I've had 10 so far. Good luck to you!!

Hi Hon.

My husband has been diagnosed with CIDP, and is undergoing monthly IVIG. His doctor got it approved through medicare (I guess different states, different doctors, etc. ).

It helped him tremendously with his balance. Didn't do a darn thing for the pain, so we look for other measures to offset his pain.

But it did help his balance.

Oh, his mom had Guillian Barre Syndrome when she was 53.

Anybody in your family ever have Guillian Barre??

Just curious.

Melody

Thanks for all your suggestions and info...

In terms of his symptoms, he just has decreased sensation in the bottoms of both feet. No pain, tingling. He used to be extremely ticklish, now I can tickle his feet and he barely notices! We were at a waterpark this summer walking around barefoot on the concrete and the skin on the pads of his feet was hanging off and bleeding. I had to point out to him that he feet were bleeding to figure this out. He had no idea! That's when I decided we should have this looked in to.

He actually had his spinal tap yesterday. Is it normal for him to be having pretty bad pains in his neck today? They come and go and do seem to ease up somewhat when he lays on his side. His pain started as a headache and worked its way down to his neck. He isn't running a fever but just doesn't feel well.

I will look more into the nerve biopsy if it gets to that point. Thanks!

Lisa

Hi, just got this off the internet:

Here you go:
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Risks
Although infrequent, several complications can occur as a result of a spinal tap.

Headache


About 5-30% of people who have a spinal tap get what is commonly referred to as post –lumbar puncture headache.


Your headache may start up to 48 hours after the procedure and usually lasts for 2 days or less.


The headache typically worsens when you are in an upright position and lessens when you lie flat.


The cause of the headache is leakage of the spinal fluid from around the puncture site.


Younger people and males have an increased risk of headaches after lumbar puncture compared with older people and females.


You reduce your chance of getting one of these headaches by drinking plenty of fluids, especially caffeine products such as tea, coffee, and cola.


Occasionally, a blood patch is needed. An anesthesiologist or pain management specialist injects a small amount of your own blood at the site where the spinal tap was performed. You usually experience relief within 30 minutes after this procedure.


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Hope this explains it.

Take care,
Melody

It's probably best to go for the skin biopsy BEFORE the sural nerve biopsy. From my knowledge, the skin biopsy has no complications usually but the nerve biopsy leaves the area permanently numb/irritated. And yes, MANY people get spinal tap headaches and they usually last for a week. I hope your husband finds a cause so they can treat it right away. Have you guys tried natural medicine/alternative treatments? EG. Vitamins, the rebuilder, microvas, tens, anodyne and the like?

Hi Lwm, a fatty liver and gout, just wondering if he drinks alcohol and has he he had a Glucose tolerance test or just a normal Glucose blood test which is useless for any possible prediabetes.
Brian :)

Brian...No, he very rarely drinks alcohol now and has never been a heavy drinker. His elevated LFTs started when he had to take INH for a positive TB test when he was about 20 years old. He does have some weight to loose but had elevated LFTs when he was a good 60 pounds lighter and not "overweight."
Yes, he did have a glucose tolerance test which came back fine. The last set of labs drawn were just slightly at the high end of normal.

Lisa (lwm_rn)

Hmmm. Is the fatty liver doesn't indicate too much alcohol, then the route the doctors are taking for evalulation is nothing, if not odd.

Usually, blood work is done first, to rule out or in the common causes. Evaluation of antibody status, general autoimmune illnesses associated with pn, prediabetes, all these are usually done prior to a spinal tap.

He's had two taps? Did I read that corrctly?

Please check out the charts I've put up at www.lizajane.org. You can use them as a guide for what tests are appropriate given his findings on emg.

But your docto has acted rather oddly.

LizaJane...

He had all the basic bloodwork done prior to his spinal tap (only had one). He had more blood work done in terms of autoimmune, neoplastic syndromes done about the same time as the spinal tap. All the blood work and the spinal tap was completely normal. Unfortunately, and strangely, he has never had a MRI or other imaging studies done which is what I am pushing for now.

The fatty liver diagnosis was several years ago, before all this started. It was confirmed through a liver biopsy. He is overweight and has high trigylcerides. His elevated liver functions started after taking INH for a positive TB test 10 years ago when he was also MUCH lighter.

Lisa