Skin Biopsy/ Follow Ups/ Travelling

    • Anonymous
      April 16, 2011 at 9:38 am

      I say my neuorologist last week. I haven’t made any more progress in the last six months, so we increased my IVIg from 60g every two weeks to 80g every two weeks.

      At the appointment, my neurologist asked me to undergo a skin biopsy, to which I consented. He cut two plugs out of the underside of my left forearm, just below the crook of my arm. Has anyone else here had this done? How long does it take to heal? My doctor said he was checking for immflamation.

      We also decided to have me undergo follow ups more often. I was following up every six months, but now we are increasing that to every three months. My doctor’s office is nearly three hundred miles away and I have to drive, which can be quite painful and tiring.

      I am wondering how often some of you follow-up with your doctors for your CIDP, and how far you have to travel to see your doctors. If it’s a long trip, do you have any tips for travelling with CIDP that might help me be a little more comfortable? Thanks.

    • Anonymous
      April 16, 2011 at 1:57 pm

      Is it possible to ask your neuro to work with another neuro who is closer to you? Then you could see the closer neuro every 3 months but maybe travel to your neuro for the every 6 month appointments.

      I Googled “skin biopsy & CIDP” and found this link:

      Here is the text:

      Detecting CIDP and Inflammatory Neuropathies from Skin Biopsies
      Docket Number D4117

      Inflammatory neuropathies, including chronic inflammatory demyelinating polyneuropathy (CIPD), are often misdiagnosed due to the lack of definitive tests. Nerve biopsy samples are often used to determine CIPD from other forms of neuropathy, but it is a painful and invasive procedure with limited diagnostic utility. While IVIg can effectively treat this condition, it is expensive and in limited supply, so it is important to be able to better distinguish the patients suffering from inflammatory neuropathies from those whose neuropathy is non-inflammatory (e.g. Charcot-Marie-Tooth Type 1 disease) and will be non-responsive to IVIg.

      Researchers in the Department of Neurology and Neuroscience at Weill Cornell Medical College have identified that elevated levels of certain biomarkers found in skin biopsy samples are indicative of CIPD and other forms of inflammatory neuropathy. Using clues obtained by microarray analysis of skin biopsy samples, they analyzed the RNA in such samples with real-time PCR for a variety of genes, comparing their expression in samples from patients with inflammatory neuropathies, non-inflammatory neuropathies and without neuropathies. They found five genes that had higher expression levels in patients with inflammatory neuropathies than in those with non-inflammatory neuropathies or without neuropathy. This gene panel can aid in the diagnosis of CIDP or other inflammatory neuropathies.

      And then I Googled “recovery from skin biopsy” and got this link:

      It says you should recover in 5-28 days, depending on the size of the site.



    • Anonymous
      April 16, 2011 at 8:06 pm

      When I first started IVIG in late 2008 I had the 5 days loading dose followed immediately by a follow up visit. Then I went to 2 days once a month for 5 months with follow ups at the local MDA Clinic (same doctor) monthly. Infusions were stopped at 5 months as “ineffective with too much risk of death and infection from ivig.”

      Following my first visit to Mayo Clinic Minn. oh, about 1,500 miles away, I returned at 6 months and then 1 year. I believe my own, and my wife’s (which is better) subjective opinion of my condition would have served us well to insist we go more often.

      I did write to the Mayo doctor and received a call from Mayo to return sooner. Next follow up in Minn. is after my six months of once per week infusions.

      At UCSD, La Jolla, Ca. I would have returned after 3 months. Would have, because I canceled that appointment to go back to Mayo. In this case, I deteriorated rapidly in only 3 months on 3 days every 3 weeks.

      First trip to Mayo my wife and I drove, with the camping gear in the car. The next two trips I flew on SWA to wherever their nearest discounted fare was and then rented a car. If I had to drive by myself 300 miles, or more, it would not be a good idea. I would be forced to fly to the local airport in Rochester or, at least the Twin Cities.

      I have decided to keep the same specialist, regardless of distance. However, my local treatments are ordered by a nearby neurologist because ‘they’ will neither write, nor accept out of state Rx at the treatment centers I attend.

      I had a biopsy, albeit a nerve biopsy under my arm, near the arm pit. Still, it’s an approx. 3″ incision and took a few weeks to heal up. I do not notice it now.

      However, a small pre-cancerous lesion was removed under the same arm, in the same area. It still bugs once in a while. The dermatologist gave it a name that says the scar tissue doesn’t know when to stop growing!

      If I had to drive 300 miles by myself, I’d find a good pie shop, or two, on the way. Then, I’d stop twice, eat pie and rest. A good reason to eat pie, right?

    • Anonymous
      April 16, 2011 at 10:34 pm

      Can you find a friend to drive you to appts?

      If the doc is good and you are comfortable seeing them it is worth the drive.

      Is it possible to go to a restaurant and have a meal and coffee before trip home?


    • Anonymous
      April 17, 2011 at 1:14 am

      Coincidentally, I travel to Weill Cornell Medical College in New York City to treat. It’s worth the trip as far as I am concerned. I never travel alone. I love pie, by the way.

    • Anonymous
      April 17, 2011 at 11:13 am

      Yuehan – I find it interesting you went to an MDA dr & they wanted to quit IVIG because of risk of infection. That was the SAME line I got from the MDA dr I took Emily too. She convinced me Emily could get HIV or Mad Cow Disease from the IVIG & said we needed to put her on steroids instead. They also didn’t want to give her the amount of IVIG she needed – said it could cause her to have a stroke. Blood viscosity tests confirmed that was not an issue. I’m wondering if MDA just isn’t up on the latest & greatest research anymore.

      Sorry to hijack the thread…just found it interesting.


    • Anonymous
      April 17, 2011 at 4:59 pm

      Hey guys, I apologize if I am showing my ignorance, but what is an MDA Clinic?:confused:

    • Anonymous
      April 17, 2011 at 5:11 pm

      Well, sorry to use an acronym without defining it. It was probably taught in the same class where I didn’t learn proper footnoting, either. (supposed to be funny!)

      think Jerry Lewis and kids with terrible muscle diseases- Muscular Dystrophy Association [url][/url]

      With a note from your doctor they provide free or discounted services and help with p/t and handicap aides. See their web site.

    • Anonymous
      April 18, 2011 at 2:07 pm


      I had a skin biopsy 2 places on my leg. It has been over a year and I have the tiniest of scars. I recommend putting neosporin and bandaids on it for a while and it should heal up more quickly. No big deal at all to me and I don’t like this kind of stuff.