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Your Replies
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April 5, 2016 at 9:56 pm
I did apply for an appointment to Mayo Clinic Rochester, Minn some years ago. In response, I was told that although they would accept my case I was placed on a months long waiting list. When the scheduled appointment time arrived I was assigned to Dr. Tracy.
Unfortunately, she was called away for something or other and I was re-assigned to other doctors.
However, I expect your care would be in the best of hands no matter who you were assigned to. There are some doctors at Mayo Clinic Rochester that wrote the neurology textbooks that other doctors study in medical school. I can recall my Primary Physician stating, “I read his textbook in medical school” when referring to a doctor at Mayo.
Other doctors at Mayo Clinic have helped develop the EMG/NCV testing methods and interpreting protocols.
I note you may now call them about appointments or apply on line.
Good luck
April 3, 2016 at 2:39 pmhello and welcome. I recall having a severe headache for days after one of my spinal lumbar punctures. When I called the local ER I was told, ‘go back where they did the procedure.’ Of course, your results may vary.
I note a web search recommends conservative treatment first. Here’s one suggestion from Mayo Clinic- “Conservative management includes adequate hydration to try to increase CSF pressure. Sometimes this is accomplished by IV hydration or drinking things high in caffeine, such as Mountain Dew soft drink, to produce a vasoconstriction and try to increase CSF pressure in this way. Another treatment may be strict bed rest for 24-48 hours..”
So, get yourself to bed with a case of mountain Dew and drink up!
https://www.urmc.rochester.edu/imaging/patients/procedures/epidural-patch.aspx
The Univ of Wisconsin Dept of Radiology recommends “The initial treatment should consist of fluids and rest
prior to treating with a blood patch.”I treated conservatively for days and days. Afterwards I cursed myself for not going to get the blood patch. Too much needless suffering.
Some sites talk about a 90% success rate on the first patch going up to 95% with a second patch.
Good luck
March 14, 2016 at 8:06 pmYou have already taken Imuran so the first warning, the enzyme check, would not apply to you. If you haven’t had a bone marrow exam, perhaps one will be recommended.
Here is a link to the Mayo clinic:
http://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/basics/definition/PRC-20020282The purpose of the bone marrow exam is to check and see if the marrow is producing the components it should be making.
good luck with your quest and your Oncologist meeting.
Consider seeing a Hematologist. Maybe the Oncologist is a Hematologist.
February 19, 2016 at 8:49 pmMore on the treatment Jim mentioned.
“Abstract OBJECTIVE:
To describe the response to rituximab in patients with treatment-resistant chronic inflammatory demyelinating polyneuropathy (CIDP) with antibodies against paranodal proteins and correlate the response with autoantibody titers.
METHODS: Patients with CIDP and IgG4 anti-contactin-1 (CNTN1) or anti-neurofascin-155 (NF155) antibodies who were resistant to IV immunoglobulin and corticosteroids were treated with rituximab and followed prospectively. Immunocytochemistry was used to detect anti-CNTN1 and anti-NF155 antibodies and ELISA with human recombinant CNTN1 and NF155 proteins was used to determine antibody titers.
RESULTS: Two patients had a marked improvement; another patient improved slightly after 10 years of stable, severe disease; and the fourth patient had an ischemic stroke unrelated to treatment and was lost to follow-up. Autoantibodies decreased in all patients after rituximab treatment.
CONCLUSIONS: Rituximab treatment is an option for patients with CIDP with IgG4 anti-CNTN1/NF155 antibodies who are resistant to conventional therapies.
CLASSIFICATION OF EVIDENCE: This study provides Class IV evidence that rituximab is effective for patients with treatment-resistant CIDP with IgG4 anti-CNTN1 or anti-NF155 antibodies.”
here: http://www.ncbi.nlm.nih.gov/pubmed/26401517
This gbs-cidp website has a list of Centers of Excellence.
http://www.gbs-cidp.org/get-support/centers-of-excellence-2/
Perhaps if you contact USF Tampa ( a center of excellence) they will have a referral to someone in Miami.
Website http://www.health.usf.edu/medicine/neurology/faculty
Phone Information
Department Of Neurology – 813-974-3541
Good luck.
