Pain and CIDP

SOMEONE IN THIS SUPPORT GROUP SAID TO GOOGLE CENTERS OF EXCELLENCE FOR NEUROPATHY. I DID THAT BECAUSE AFTER 2 YEARS OF BEING TREATED FOR CIDP MY NEURO DECIDED AFTER READING 2 PAPERS FROM THE NETHERLANDS THAT PATIENTS TREATED W/THE CHEMO VELCADE DID NOT HAVE CIPD THEY HAD VELCADE NEUROPATHY AND I WAS REFERRED BACK TO ONCOLOGY WHO SAID DEFINITELY NOT. I THEN SAW ANOTHER NEURO WHO WAS GOING TO START ME ON IVIG AGAIN BUT MEDICARE WILL NOT PAY FOR IT BECAUSE MY KIDNEY FUNCTION IS NOT NORMAL EVEN THO IT WAS THE SAME IN PREVIOUS YEARS.

TODAY I WENT TO THE CENTER OF EXCELLENCE AND THE NEURO THERE TOLD ME THAT CIDP DOES NOT CAUSE PAIN. I TOLD HIM I WAS A MEMBER OF AN ONLINE SUPPORT GROUP AND MANY COMPLAIN OF THE SAME PAIN AS I HAVE. HE SAID THEN THEY DON'T HAVE CIDP.WONDERING WHERE I GO FROM HERE

MAMABEAR

I would respectfully disagree with that neuroologist.

I looked up Velcade and a known side effect is small fiber neuropathy and very painful at that. It says it is used to treat Myeloma. Myeloma is a differential for cidp. Were you originally diagnosed with cidp and given Velcade?

Cidp is also known to be very painful as well. There are many articles and abstracts published I can give you if it would help. I am suspicious why a doctor from a center of excellence would say differently. You absolutely cannot be dismissed from having cidp because of pain. CIDP can only be ruled out by your emg/ncs if it doesn't follow a specific pattern.

I wasn't clear if you been treated with ivig in the past with kidney issues? IVIG has very large proteins that have to be filtered out through the kidneys which is why kidney screening is important. Have they determined what is the cause of the abnormal kidney function test?

http://www.gbs-cidp.org/wp-content/uploads/2012/01/CIDP.pdf

Read up.

When a doctor says CIDP does not cause pain. Take a nine volt battery ask them to place the poles on their tongue and hold it there. If the discomfort is not described as pain then. Ask them if muscle cramping is considered painful. Or is it considered exacerbated discomfort. The pain from cramping, burning sensations, pins and needle tingling is painful. The use of a tens device to stimulate muscles can be very painful if it is up to high and is left on. I would offer that the Dr is unaware of the exasperated discomfort . And the level of non pain that CIDP can cause.

I have always had severe pain even before being diagnosed with CIDP. I have flares of pain so bad I can't get out of bed to go to the bathroom, so you know what happens. So bad it almost drops me to my knees. I have an appointment with a pain clinic coming up this Friday. I am just in misery most of the time because of the pain. I have all over body pain that makes it impossible to even function. I pray I can get some help Friday.

I HAVE MULTIPLE MYELOMA, WAS TREATED W/VELCADE, HAVE BEEN IN REMISSION SINCE APRIL 2011. THE ONSET OF OF THE PAIN AND NEUROPATHY DID NOT BEGIN UNTIL 5 WKS AFTER. MY ONCOLOGIST SAID IT IS NOT VELCDE CONNECTED, IF IT WAS I WOULD HAVE STARTED WHILE GETTING VELCADE. HE SAID HE HAS STUDIED VELCADE, TEACHES ABOUT THE SIDE EFFECTS AND IT IS NOT VELCADE NEUROPATHY. I DON'T REALLY CARE WHAT THE CAUSE IS I JUST WANT PAIN RELIEF.IN PREVIOUS YEARS EVEN THO MY KIDNEY FUNCTION WAS WORSE THAN IT IS RIGHT NOW I HAD THE IVIG. MY GABAPENTIN HAS BEEN EXTENDED FROM 3 TO 4 TIMES A DAY AND I AM SCHEDULED TO GO BACK IN 2 MOS. WHEN I FIRST CALLED FOR AN APPT I WAS TOLD IF I WANTED TO SEE THE HEAD DR. I WOULD HAVE TO WAIT UNTIL MAY, I WAS IN TOO MUCH PAIN FOR THAT BUT MAYBE I SHOULD HAVE WAITED.

mabes said:

I looked up Velcade and a known side effect is small fiber neuropathy and very painful at that. It says it is used to treat Myeloma. Myeloma is a differential for cidp. Were you originally diagnosed with cidp and given Velcade?

Cidp is also known to be very painful as well. There are many articles and abstracts published I can give you if it would help. I am suspicious why a doctor from a center of excellence would say differently. You absolutely cannot be dismissed from having cidp because of pain. CIDP can only be ruled out by your emg/ncs if it doesn't follow a specific pattern.

I wasn't clear if you been treated with ivig in the past with kidney issues? IVIG has very large proteins that have to be filtered out through the kidneys which is why kidney screening is important. Have they determined what is the cause of the abnormal kidney function test?

I WISH I WAS MORE COMPUTER LITERATE AND COULD KEEP MY REPLIES IN CHRONOLOGICAL ORDER. I AM THINKING OF PRINTING THIS PAGE AND TAKING IT W/ ME WHEN I GO BACK.

MAYBE I NEED TO ASK HIS DEFINITION OF PAIN

Robert Martin said:

When a doctor says CIDP does not cause pain. Take a nine volt battery ask them to place the poles on their tongue and hold it there. If the discomfort is not described as pain then. Ask them if muscle cramping is considered painful. Or is it considered exacerbated discomfort. The pain from cramping, burning sensations, pins and needle tingling is painful. The use of a tens device to stimulate muscles can be very painful if it is up to high and is left on. I would offer that the Dr is unaware of the exasperated discomfort . And the level of non pain that CIDP can cause.

Maybe you could consult with a kidney doctor who could look at the function test and ok the ivig since you were on it before. An emg/ncs would determine whether the damage was from velcade or cidp. Velcade may also cause mitochondria damage. I have some references and would ask your doctor about them. This may be the cause of some of your troubles. I think that I have mitochondria complications. I have been researching and making changes. Now I have less pain and more energy within weeks of the changes. I was doing so well I got lax with it and started feeling the pain and weakness return. It's worth a try and very easy.

I have gone gluten free and buy organic when possible. I avoid genetically modified foods. I started on a low oxalate diet. Exercise is very important. I use Now Brand. I take Calcium Citrate 10 minutes before I eat and Magnesium Citrate 20 minutes after. There is good science behind all of this. I will enclose a few articles to explain. I hope you find answers and treatment very soon.

http://bloodjournal.hematologylibrary.org/content/112/5/1593.full


http://www.youtube.com/watch?v=KLjgBLwH3Wc

http://experiencelife.com/article/functional-wellness-part-6-energy-mitochondria-and-toxicity/

http://lowoxalate.info/


mamabear said:

I HAVE MULTIPLE MYELOMA, WAS TREATED W/VELCADE, HAVE BEEN IN REMISSION SINCE APRIL 2011. THE ONSET OF OF THE PAIN AND NEUROPATHY DID NOT BEGIN UNTIL 5 WKS AFTER. MY ONCOLOGIST SAID IT IS NOT VELCDE CONNECTED, IF IT WAS I WOULD HAVE STARTED WHILE GETTING VELCADE. HE SAID HE HAS STUDIED VELCADE, TEACHES ABOUT THE SIDE EFFECTS AND IT IS NOT VELCADE NEUROPATHY. I DON'T REALLY CARE WHAT THE CAUSE IS I JUST WANT PAIN RELIEF.IN PREVIOUS YEARS EVEN THO MY KIDNEY FUNCTION WAS WORSE THAN IT IS RIGHT NOW I HAD THE IVIG. MY GABAPENTIN HAS BEEN EXTENDED FROM 3 TO 4 TIMES A DAY AND I AM SCHEDULED TO GO BACK IN 2 MOS. WHEN I FIRST CALLED FOR AN APPT I WAS TOLD IF I WANTED TO SEE THE HEAD DR. I WOULD HAVE TO WAIT UNTIL MAY, I WAS IN TOO MUCH PAIN FOR THAT BUT MAYBE I SHOULD HAVE WAITED.

mabes said:

I looked up Velcade and a known side effect is small fiber neuropathy and very painful at that. It says it is used to treat Myeloma. Myeloma is a differential for cidp. Were you originally diagnosed with cidp and given Velcade?

Cidp is also known to be very painful as well. There are many articles and abstracts published I can give you if it would help. I am suspicious why a doctor from a center of excellence would say differently. You absolutely cannot be dismissed from having cidp because of pain. CIDP can only be ruled out by your emg/ncs if it doesn't follow a specific pattern.

I wasn't clear if you been treated with ivig in the past with kidney issues? IVIG has very large proteins that have to be filtered out through the kidneys which is why kidney screening is important. Have they determined what is the cause of the abnormal kidney function test?

MABES, THANK YOU FOR THE INFO, I WILL CERTAINLY LOOK INTO IT, I HAVE A NEPHROLOGIST AND IT IS NOT THE DRS DON'T WANT TO GIVE THE IVIG TI ME, MEDICARE WON'T PAY FOR IT. I WENT TO THE CENTER FOR EXCELLENCE HOPING FOR AN ALTERNATIVE TREATMENT. I WAS ORIGINALLY DX BY SPINAL TAP, EMG, & BIOPSY OF SOME NERVE IN THE LEFT ANKLE. THE DX WAS REVERSED BY THE SAME NEURO AFTER HISREADING 2 PAPERS WRITTEN BY SOMEONE IN THE NETHERLANDS,

mabes said:

Maybe you could consult with a kidney doctor who could look at the function test and ok the ivig since you were on it before. An emg/ncs would determine whether the damage was from velcade or cidp. Velcade may also cause mitochondria damage. I have some references and would ask your doctor about them. This may be the cause of some of your troubles. I think that I have mitochondria complications. I have been researching and making changes. Now I have less pain and more energy within weeks of the changes. I was doing so well I got lax with it and started feeling the pain and weakness return. It's worth a try and very easy.

I have gone gluten free and buy organic when possible. I avoid genetically modified foods. I started on a low oxalate diet. Exercise is very important. I use Now Brand. I take Calcium Citrate 10 minutes before I eat and Magnesium Citrate 20 minutes after. There is good science behind all of this. I will enclose a few articles to explain. I hope you find answers and treatment very soon.

http://bloodjournal.hematologylibrary.org/content/112/5/1593.full


http://www.youtube.com/watch?v=KLjgBLwH3Wc

http://experiencelife.com/article/functional-wellness-part-6-energy...

http://lowoxalate.info/


mamabear said:

I HAVE MULTIPLE MYELOMA, WAS TREATED W/VELCADE, HAVE BEEN IN REMISSION SINCE APRIL 2011. THE ONSET OF OF THE PAIN AND NEUROPATHY DID NOT BEGIN UNTIL 5 WKS AFTER. MY ONCOLOGIST SAID IT IS NOT VELCDE CONNECTED, IF IT WAS I WOULD HAVE STARTED WHILE GETTING VELCADE. HE SAID HE HAS STUDIED VELCADE, TEACHES ABOUT THE SIDE EFFECTS AND IT IS NOT VELCADE NEUROPATHY. I DON'T REALLY CARE WHAT THE CAUSE IS I JUST WANT PAIN RELIEF.IN PREVIOUS YEARS EVEN THO MY KIDNEY FUNCTION WAS WORSE THAN IT IS RIGHT NOW I HAD THE IVIG. MY GABAPENTIN HAS BEEN EXTENDED FROM 3 TO 4 TIMES A DAY AND I AM SCHEDULED TO GO BACK IN 2 MOS. WHEN I FIRST CALLED FOR AN APPT I WAS TOLD IF I WANTED TO SEE THE HEAD DR. I WOULD HAVE TO WAIT UNTIL MAY, I WAS IN TOO MUCH PAIN FOR THAT BUT MAYBE I SHOULD HAVE WAITED.

mabes said:

I looked up Velcade and a known side effect is small fiber neuropathy and very painful at that. It says it is used to treat Myeloma. Myeloma is a differential for cidp. Were you originally diagnosed with cidp and given Velcade?

Cidp is also known to be very painful as well. There are many articles and abstracts published I can give you if it would help. I am suspicious why a doctor from a center of excellence would say differently. You absolutely cannot be dismissed from having cidp because of pain. CIDP can only be ruled out by your emg/ncs if it doesn't follow a specific pattern.

I wasn't clear if you been treated with ivig in the past with kidney issues? IVIG has very large proteins that have to be filtered out through the kidneys which is why kidney screening is important. Have they determined what is the cause of the abnormal kidney function test?

MAMABEAR;

Are you sure it was a Center of Excellence Dr? They are Specialists in CIDP and GBS. My Center of Excellence Neurologist was wonderful. I am in remission because of his care. Where are you?

http://www.gbs-cidp.org

Here is the complete list of Centers of Excellence (from the GBS/CIDP Foundation International.

Amsterdam, The Netherlands - Academic Medical Center (AMC), University of Amsterdam

Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
Telephone: +31.20.566.3942
Fax: +31.20.566.9374

Faculty
Prof dr M. de Visser
Prof dr I.N. van Schaik
Dr A.J. van der Kooi Dr C. Verhamme
Dr F. Eftimov

Baltimore, MD - The Johns Hopkins University School of Medicine and The Johns Hopkins Hospital

601 North Wolfe Street
Baltimore, MD 21287
Phone: 410-■■■■■■■■
Fax: 410-■■■■■■■■
www.hopkinsmedicine.org

Adult Care: Dr. Cornblath
Dr. Chaudhry
Dr. Morrison
Dr. Hoke
Dr. Polydefkis
Pediatric:
Dr. Crawford
Appointments:
Dr. David R. Cornblath
410-■■■■■■■■

Boston, MA - St. Elizabeth's Medical Center

736 Cambridge Street
Boston, MA 02135
Phone: 617-■■■■■■■■
Fax: 617-■■■■■■■■
www.caritasstelizabeths.org

Adult Care: Kenneth C. Gorson, MD Professor of Neurology, Director of Neuromuscular Services
Pediatric: None
Appointments: Debbie
617-■■■■■■■■

Buenos Aires Argentina - Hospital Británico

Dr Ricardo Claudio Reisin
Address: Perdriel 74 (1280) Buenos Aires Argentina
Telephone: 541 14 3041081
Fax: 541 14 9643899

Faculty
Dra Ana Pardal
Dra Cintia Marchesoni

Buffalo, NY - University of Buffalo School of Medicine and Biomedical Sciences

Department of Neurology 100 High Street
Buffalo, NY 14202
Phone: 716-■■■■■■■■

Adult Care: Gil I Wolf, MD, Professor & Chair, Dept of Neurology, SUNY Buffalo
Nicholas J Silvestri
Pediatric:
None

Detroit, MI - Wayne State University Group/Detroit Medical Center

Dept. of Neurology
University Health Center 8D
201 Saint Antoine
Detroit, Michigan 48201
www.neurology.med.wayne.edu

Adult: Robert Lisak, MD
Agnes Acsadi, MD
Sindhu Ramchandran, MD, MPH
Richard Lewis, MD
Pediatric:
Gyula Acsadi, MD Pediatric Neurology

Stacy Masse, RN (Nurse Coordinator)
Phone: 313-■■■■■■■■
Email: ■■■■■■■■■■■■■■■■■■■■

Duesseldorf, Germany - Heinrich-Heine University Department of Neurology

Moorenstrasse 5
40225
Duesseldorf, Germany
Phone: +49-211-8117880
Fax: +49-211-8118469
www.neurologie.uni-duesseldorf.de

Adult Care: Prof. Dr. Hans-Peter Hartung
Prof. Dr. Bernd C. Kieseier
Prof. Dr. Sebastian Jander
Dr. Helmar C. Lehmann
Pediatric: Dr. Birgit Assmann
Dr. Michael Karenfort
Appointments:
Mr. Muecke
+49-21-8117887

Houston, TX - The University of Texas Health Science Center at Houston (UTHealth)

UT Physicians Neurology Clinic
6410 Fannin
Suite 1014
Houston, TX 66160
www.utneurology.com
Phone: 832-■■■■■■■■ (Adult), 832-■■■■■■■■ (Pediatric)
Fax: 713-■■■■■■■■ (Adult), 713-■■■■■■■■ (Pediatric)

Adult Care: Kazim Sheikh, MD
Suur Biliciler, MD
Parveen Athar, MD
Pediatric: Pedro Mancias, MD
Appointments:
Adult: Cynthia Johnson (Clinic Manager)
Phone: 832-■■■■■■■■
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ or fax patient information to 713-■■■■■■■■
Pediatric: Edith Lomas, MA
Phone: 832-■■■■■■■■

Kansas City, KS - University of Kansas Medical Center, Department of Neurology

3599 Rainbow Blvd
Department of Neurology
Kansas City, KS 66160
Phone: 913-■■■■■■■■
Fax: 913-■■■■■■■■
www.kumc.edu/neurology

Adult Care: Richard Barohn, MD
Arthur Dick, MD
April McVey, MD
Mamatha Pasnoor, MD
Yunxia Wang
Pediatric:
Richard Barohn, MD
April McVey, MD
Contacts: Mazen Dimachkie, MD and Mamatha Pasnoor, MD
Appointments:
913-■■■■■■■■

London, England - King's College Hospital

Adult Care: Department of Neurology
King’s College Hospital
Denmark Hill
London SE5 9RS, UK www.kch.nhs.uk Phone/Appointments: +44 20 3299 8343
Fax: +44 20 3299 8504
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■

Dr. Robert Hadden Consultant Neurologist
Dr. David Bennett

Pediatric: Department of Paediatric Neurology
Evelina Children’s Hospital
St. Thomas’ Hospital
Westminster Bridge Road
London, SE1 7EH, UK
Phone/Appointments: +44 207 188 4006
Fax: +44 207 188 0851
Email: Dr. Elizabeth Wraige
■■■■■■■■■■■■■■■■■■■■■■■■■■■■

Academic Institution: www.kingshealthpartners.org

Los Angeles, CA - Cedars-Sinai Medical Center

127 S San Vicente Blvd A 6600, Los Angeles Ca 90048
Telephone: 310-■■■■■■■■
Fax: 310-■■■■■■■■

Faculty
Richard Lewis, Md
Robert Baloh, Md Phd

Pediatric Neurology
8700 Beverly Bi # 4221, Los Angeles Ca 90048
Telephone: 310-■■■■■■■■
Fax: 310-■■■■■■■■

Faculty
Tyler M. Pierson, MD, PhD

Los Angeles, CA - The University of California Medical Center

Neurological Services Michael Graves, MD
300 UCLA Medical Plaza
Suite B-200
University of California
Los Angeles, CA 90095-6975
Coordinator:
Elen Sarkisyan
Phone: 310-■■■■■■■■
Fax: 310 301 5391
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■

Milan, Italy - Milan University, Humanitas Clinical and Research Center

Via Manzoni 56, Rozzano, Milan, 20089, Italy Telephone: +39.02.8224.2209
Fax: +39.02.8224.2298

Faculty

Eduardo Nobile-Orazio

Nashville, TN - Vanderbilt University Medical Center

A-0118 MCN aa0204B, Nashville, TN 37232
Telephone: 615-■■■■■■■■
Fax: 615-■■■■■■■■

Faculty

Peter. D. Donofrio, MD, Professor of Neurology
W. Bryan. Burnette, MD, MS, Assistant Professor of Neurology
Jane Howard, MD, Assistant Professor of Neurology
Christopher D. Lee, MD, MPH, Assistant Professor of Neurology
Jun Li, MD, Ph.D., Associate Professor of Neurology
Amanda C. Peltier, MD, MS, Assistant Professor of Neurology

Pediatric

W. Bryan. Burnette, MD, MS, Assistant Professor of Neurology

Philadelphia, PA - Perelman School of Medicine at the University of Pennsylvania

Adult Care: Hospital of the University of Pennsylvania
Department of Neurology
Ravdin Building, 2nd Floor
3400 Spruce Street, Philadelphia, PA 19104
Appointments: 215-■■■■■■■■
Fax: 215-■■■■■■■■

Shawn J. Bird, MD
Mark J. Brown, MD
Raymond S. Price, MD
Steven S. Scherer, MD, PhD
Pediatric Care: Children’s Hospital of Philadelphia,
Division of Neurology
Wood Building, 6th floor
3401 Civic Center Blvd, Philadelphia, PA 19104

Appointments: Sabrina W. Yum, MD 215-■■■■■■■■
or Fax: 215-■■■■■■■■
Questions: 215-■■■■■■■■ or ■■■■■■■■■■■■■■■■■■■■■

Phoenix, AZ - Phoenix Neurological Associates, Ltd.

Banner Good Samaritan Medical Center 5090 North 40th St.
Suite 250
Phoenix, AZ 85018
Phone: 623-■■■■■■■■
Fax: 602-■■■■■■■■ www.phoenixneurology.com
Adult Care:
Todd D. Levine, MD
David S. Saperstein, MD
Pediatric:
none
Appointments:
623-■■■■■■■■

Rotterdam, The Netherlands - Erasmus MC University Medical Centre

Outpatient Clinic of Neurology
Erasmus Medical Centre Rotterdam
‘s-Gravendijkwal 230
3015 CE Rotterdam
The Netherlands www.erasmusmc.nl
Adult: Prof dr Pieter A. van Doorn, MD, PhD
Dr. Bart C. Jacobs, MD, PhD
Phone/Appointments: +31 10-7040130 on working days from 08.00 – 17.00
Fax: +31 10-7035927
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■
Pediatric:
Outpatient Clinic of Pediatric Neurology
Dr. M.C.Y. de Wit, MD, PhD
Dr. I.F.M. de Coo, MD, PhD
Dr. Molenwaterplein 60
3015 GJ Rotterdam
The Netherlands
Phone/Appointments: +31 10-7036341 on working days from 08.00 – 17.00
Fax: +31 10-7036345
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■

San Francisco, CA - California Pacific Medical Center

Forbes Norris MDA/ALS Research Center
2324 Sacramento Street, #111t
San Francisco, CA 94115
Phone: 415-■■■■■■■■
Fax: 415-■■■■■■■■

Adult and Child Care: Dr. Jonathan S. Katz, MD Director of Neuromuscular Clinic Director ALS Clinic Dr. Robert G. Miller, MD Professor and Chair of Neurology

Appointments: 415-■■■■■■■■

I GUESS I GOOGLED THE WRONG THING, I WENT TO A NEUROPATHY ASSOC. DESIGNATED CENTER OF EXCELLENCE, SINCE THERE WERE ONLY 15 LISTED IN THE U.S I THOUGHT I HAD THE RIGHT ONES. UNFORTUNATELY I DO NOT LIVE NEAR ANY ON YOUR LIST AND DO NOT HAVE ANY WAY TO GET TO ANY. I AM A WIDOW AND MY SON IS MY CARE GIVER AND HE HAS TO WORK

THANKYOU SO MUCH FOR THE INFO,WISH I COULD GO TO ONE. I LIVE IN FL.

Blue Topaz said:

MAMABEAR;

Are you sure it was a Center of Excellence Dr? They are Specialists in CIDP and GBS. My Center of Excellence Neurologist was wonderful. I am in remission because of his care. Where are you?

http://www.gbs-cidp.org

Here is the complete list of Centers of Excellence (from the GBS/CIDP Foundation International.

Amsterdam, The Netherlands - Academic Medical Center (AMC), University of Amsterdam

Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
Telephone: +31.20.566.3942
Fax: +31.20.566.9374

Faculty
Prof dr M. de Visser
Prof dr I.N. van Schaik
Dr A.J. van der Kooi Dr C. Verhamme
Dr F. Eftimov

Baltimore, MD - The Johns Hopkins University School of Medicine and The Johns Hopkins Hospital

601 North Wolfe Street
Baltimore, MD 21287
Phone: 410-■■■■■■■■
Fax: 410-■■■■■■■■
www.hopkinsmedicine.org

Adult Care: Dr. Cornblath
Dr. Chaudhry
Dr. Morrison
Dr. Hoke
Dr. Polydefkis
Pediatric:
Dr. Crawford
Appointments:
Dr. David R. Cornblath
410-■■■■■■■■

Boston, MA - St. Elizabeth's Medical Center

736 Cambridge Street
Boston, MA 02135
Phone: 617-■■■■■■■■
Fax: 617-■■■■■■■■
www.caritasstelizabeths.org

Adult Care: Kenneth C. Gorson, MD Professor of Neurology, Director of Neuromuscular Services
Pediatric: None
Appointments: Debbie
617-■■■■■■■■

Buenos Aires Argentina - Hospital Británico

Dr Ricardo Claudio Reisin
Address: Perdriel 74 (1280) Buenos Aires Argentina
Telephone: 541 14 3041081
Fax: 541 14 9643899

Faculty
Dra Ana Pardal
Dra Cintia Marchesoni

Buffalo, NY - University of Buffalo School of Medicine and Biomedical Sciences

Department of Neurology 100 High Street
Buffalo, NY 14202
Phone: 716-■■■■■■■■

Adult Care: Gil I Wolf, MD, Professor & Chair, Dept of Neurology, SUNY Buffalo
Nicholas J Silvestri
Pediatric:
None

Detroit, MI - Wayne State University Group/Detroit Medical Center

Dept. of Neurology
University Health Center 8D
201 Saint Antoine
Detroit, Michigan 48201
www.neurology.med.wayne.edu

Adult: Robert Lisak, MD
Agnes Acsadi, MD
Sindhu Ramchandran, MD, MPH
Richard Lewis, MD
Pediatric:
Gyula Acsadi, MD Pediatric Neurology

Stacy Masse, RN (Nurse Coordinator)
Phone: 313-■■■■■■■■
Email: ■■■■■■■■■■■■■■■■■■■■

Duesseldorf, Germany - Heinrich-Heine University Department of Neurology

Moorenstrasse 5
40225
Duesseldorf, Germany
Phone: +49-211-8117880
Fax: +49-211-8118469
www.neurologie.uni-duesseldorf.de

Adult Care: Prof. Dr. Hans-Peter Hartung
Prof. Dr. Bernd C. Kieseier
Prof. Dr. Sebastian Jander
Dr. Helmar C. Lehmann
Pediatric: Dr. Birgit Assmann
Dr. Michael Karenfort
Appointments:
Mr. Muecke
+49-21-8117887

Houston, TX - The University of Texas Health Science Center at Houston (UTHealth)

UT Physicians Neurology Clinic
6410 Fannin
Suite 1014
Houston, TX 66160
www.utneurology.com
Phone: 832-■■■■■■■■ (Adult), 832-■■■■■■■■ (Pediatric)
Fax: 713-■■■■■■■■ (Adult), 713-■■■■■■■■ (Pediatric)

Adult Care: Kazim Sheikh, MD
Suur Biliciler, MD
Parveen Athar, MD
Pediatric: Pedro Mancias, MD
Appointments:
Adult: Cynthia Johnson (Clinic Manager)
Phone: 832-■■■■■■■■
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ or fax patient information to 713-■■■■■■■■
Pediatric: Edith Lomas, MA
Phone: 832-■■■■■■■■

Kansas City, KS - University of Kansas Medical Center, Department of Neurology

3599 Rainbow Blvd
Department of Neurology
Kansas City, KS 66160
Phone: 913-■■■■■■■■
Fax: 913-■■■■■■■■
www.kumc.edu/neurology

Adult Care: Richard Barohn, MD
Arthur Dick, MD
April McVey, MD
Mamatha Pasnoor, MD
Yunxia Wang
Pediatric:
Richard Barohn, MD
April McVey, MD
Contacts: Mazen Dimachkie, MD and Mamatha Pasnoor, MD
Appointments:
913-■■■■■■■■

London, England - King's College Hospital

Adult Care: Department of Neurology
King’s College Hospital
Denmark Hill
London SE5 9RS, UK www.kch.nhs.uk Phone/Appointments: +44 20 3299 8343
Fax: +44 20 3299 8504
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■

Dr. Robert Hadden Consultant Neurologist
Dr. David Bennett

Pediatric: Department of Paediatric Neurology
Evelina Children’s Hospital
St. Thomas’ Hospital
Westminster Bridge Road
London, SE1 7EH, UK
Phone/Appointments: +44 207 188 4006
Fax: +44 207 188 0851
Email: Dr. Elizabeth Wraige
■■■■■■■■■■■■■■■■■■■■■■■■■■■■

Academic Institution: www.kingshealthpartners.org

Los Angeles, CA - Cedars-Sinai Medical Center

127 S San Vicente Blvd A 6600, Los Angeles Ca 90048
Telephone: 310-■■■■■■■■
Fax: 310-■■■■■■■■

Faculty
Richard Lewis, Md
Robert Baloh, Md Phd

Pediatric Neurology
8700 Beverly Bi # 4221, Los Angeles Ca 90048
Telephone: 310-■■■■■■■■
Fax: 310-■■■■■■■■

Faculty
Tyler M. Pierson, MD, PhD

Los Angeles, CA - The University of California Medical Center

Neurological Services Michael Graves, MD
300 UCLA Medical Plaza
Suite B-200
University of California
Los Angeles, CA 90095-6975
Coordinator:
Elen Sarkisyan
Phone: 310-■■■■■■■■
Fax: 310 301 5391
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■

Milan, Italy - Milan University, Humanitas Clinical and Research Center

Via Manzoni 56, Rozzano, Milan, 20089, Italy Telephone: +39.02.8224.2209
Fax: +39.02.8224.2298

Faculty

Eduardo Nobile-Orazio

Nashville, TN - Vanderbilt University Medical Center

A-0118 MCN aa0204B, Nashville, TN 37232
Telephone: 615-■■■■■■■■
Fax: 615-■■■■■■■■

Faculty

Peter. D. Donofrio, MD, Professor of Neurology
W. Bryan. Burnette, MD, MS, Assistant Professor of Neurology
Jane Howard, MD, Assistant Professor of Neurology
Christopher D. Lee, MD, MPH, Assistant Professor of Neurology
Jun Li, MD, Ph.D., Associate Professor of Neurology
Amanda C. Peltier, MD, MS, Assistant Professor of Neurology

Pediatric

W. Bryan. Burnette, MD, MS, Assistant Professor of Neurology

Philadelphia, PA - Perelman School of Medicine at the University of Pennsylvania

Adult Care: Hospital of the University of Pennsylvania
Department of Neurology
Ravdin Building, 2nd Floor
3400 Spruce Street, Philadelphia, PA 19104
Appointments: 215-■■■■■■■■
Fax: 215-■■■■■■■■

Shawn J. Bird, MD
Mark J. Brown, MD
Raymond S. Price, MD
Steven S. Scherer, MD, PhD
Pediatric Care: Children’s Hospital of Philadelphia,
Division of Neurology
Wood Building, 6th floor
3401 Civic Center Blvd, Philadelphia, PA 19104

Appointments: Sabrina W. Yum, MD 215-■■■■■■■■
or Fax: 215-■■■■■■■■
Questions: 215-■■■■■■■■ or ■■■■■■■■■■■■■■■■■■■■■

Phoenix, AZ - Phoenix Neurological Associates, Ltd.

Banner Good Samaritan Medical Center 5090 North 40th St.
Suite 250
Phoenix, AZ 85018
Phone: 623-■■■■■■■■
Fax: 602-■■■■■■■■ www.phoenixneurology.com
Adult Care:
Todd D. Levine, MD
David S. Saperstein, MD
Pediatric:
none
Appointments:
623-■■■■■■■■

Rotterdam, The Netherlands - Erasmus MC University Medical Centre

Outpatient Clinic of Neurology
Erasmus Medical Centre Rotterdam
‘s-Gravendijkwal 230
3015 CE Rotterdam
The Netherlands www.erasmusmc.nl
Adult: Prof dr Pieter A. van Doorn, MD, PhD
Dr. Bart C. Jacobs, MD, PhD
Phone/Appointments: +31 10-7040130 on working days from 08.00 – 17.00
Fax: +31 10-7035927
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■
Pediatric:
Outpatient Clinic of Pediatric Neurology
Dr. M.C.Y. de Wit, MD, PhD
Dr. I.F.M. de Coo, MD, PhD
Dr. Molenwaterplein 60
3015 GJ Rotterdam
The Netherlands
Phone/Appointments: +31 10-7036341 on working days from 08.00 – 17.00
Fax: +31 10-7036345
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■

San Francisco, CA - California Pacific Medical Center

Forbes Norris MDA/ALS Research Center
2324 Sacramento Street, #111t
San Francisco, CA 94115
Phone: 415-■■■■■■■■
Fax: 415-■■■■■■■■

Adult and Child Care: Dr. Jonathan S. Katz, MD Director of Neuromuscular Clinic Director ALS Clinic Dr. Robert G. Miller, MD Professor and Chair of Neurology

Appointments: 415-■■■■■■■■

Mamabear,

Here is a contact list for you. Maybe they can help you get the help you need.

GBS/CIDP FOUNDATION INTERNATIONAL

CHAPTER DIRECTORY

FLORIDA

BOCA RATON/DELRAY BEACH

Harriette Lion

Delray Beach, FL 33446

(561) ■■■■■■■■

■■■■■■■■■■■■■■■

JUNIPER/STUART

Cecilia O'Neal

Hobe Sound, FL 33455

(772) ■■■■■■■■

cecilia.o'■■■■■■■■■■■■■■■■■

CLEARWATER/TAMPA

Nancy Roberts

Belleair, FL 33756

(813) ■■■■■■■■

■■■■■■■■■■■■■■■■■■■■■■■■■■

MIAMI

Caroline Morrison

Miami, FL 33133

(305) ■■■■■■■■ (cell)

■■■■■■■■■■■■■■■■■■■■■■■

FT. MYERS

Santo Garcia

Fort Myers, FL 33919

(239) 565- 8300

■■■■■■■■■■■■■■■■■■■■■■■■■

ORLANDO

Ian Harper

Orlando, FL 32837

(407) ■■■■■■■■

■■■■■■■■■■■■■■■■■■

JACKSONVILLE

Andrea Davis

Jacksonville, FL 32225

(904) ■■■■■■■■

■■■■■■■■■■■■■■■■■■■■■■■■■

TALLAHASSEE

Cathie Williams

Monticello, FL 32344

(850) ■■■■■■■■

■■■■■■■■■■■■■■■■■■

Thank you, there is one near me.

Blue Topaz said:

Mamabear,

Here is a contact list for you. Maybe they can help you get the help you need.

GBS/CIDP FOUNDATION INTERNATIONAL

CHAPTER DIRECTORY

FLORIDA

BOCA RATON/DELRAY BEACH

Harriette Lion

Delray Beach, FL 33446

(561) ■■■■■■■■

■■■■■■■■■■■■■■■

JUNIPER/STUART

Cecilia O'Neal

Hobe Sound, FL 33455

(772) ■■■■■■■■

cecilia.o'■■■■■■■■■■■■■■■■■

CLEARWATER/TAMPA

Nancy Roberts

Belleair, FL 33756

(813) ■■■■■■■■

■■■■■■■■■■■■■■■■■■■■■■■■■■

MIAMI

Caroline Morrison

Miami, FL 33133

(305) ■■■■■■■■ (cell)

■■■■■■■■■■■■■■■■■■■■■■■

FT. MYERS

Santo Garcia

Fort Myers, FL 33919

(239) 565- 8300

■■■■■■■■■■■■■■■■■■■■■■■■■

ORLANDO

Ian Harper

Orlando, FL 32837

(407) ■■■■■■■■

■■■■■■■■■■■■■■■■■■

JACKSONVILLE

Andrea Davis

Jacksonville, FL 32225

(904) ■■■■■■■■

■■■■■■■■■■■■■■■■■■■■■■■■■

TALLAHASSEE

Cathie Williams

Monticello, FL 32344

(850) ■■■■■■■■

■■■■■■■■■■■■■■■■■■