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Living with Polyneuropathy CIDP, GBS, & CMT

Looking for another Neuro


#1

I have had CIDP since 2004/2005 and I am in need of another Neuro. I really need one who"s expertise is in GBS/CIDP,MS etc. If anyone can help.

I live in Indiana,Pa. reasonably close to Pittsburgh, Greensburg, Altoona,Pa. Western Pa...

Having a hard time finding someone qualified and need help.

I am now back on Steroids that my old Neuro has me on and I am waiting to see what happens. Things do not look promising at this point.

"Any help will be greatly appreciated.
Thanx Kenee


#2

My wife is in exactly the same situation. Had CIDP since '05 finally diagnosed 10/12 but now the neuro wants to just text book her. She's one of the rare that present with pain. So if anyone has any recommendations for SC we'd love to hear them.

Thanks!

CIDPHubby


#3

Hi Kenee:

I am in the same boat as you; except I was diagnosed 1 year ago with CIDP. The only treatment that I feel truly helps is IVig and the last time I received it, I developed a blood clot in my arm where the infusion site was and was hospitalized and put on blood thinners. Since then, my neuro will not put me back on IVig because she says it's too risky for another blood clot. Well, if I'm already on blood thinners, what's the likelyhood I would get another clot? My infusion RN said it was a human error and does not believe it was due to the IG. So, I have an appointment with a specialist out of Wayne State University - GBS/CIDP Center for Excellence tomorrow morning 1/31. It is so hard to find anyone who understands what we go through and all the complexities that come with it. My employer (a hospital) is becoming frustrated with my intermittent days off due to side effects, doctor appointments, treatments, etc. If only they knew how incredibly frustrated I FEEL! I am the sole supporter of my daughter and myself. I need my job and my health benefits.

I hope some of the people on here can help you with finding a good solid doctor who will understand this goofy disease.

Lisa in Mich


#4

I live near Greensburg and was diagnosed in 2007 with symptoms starting in 2001. Very Frustrating. I, too, am fed up with local neurologists. I have an appt in Pittsburgh at end of month with a doctor that specializes in CIDP. I’ll post if I think he will be an asset to my care.

Take care! Chris


#5

I live near Greensburg and was diagnosed in 2007 with symptoms starting in 2001. Very Frustrating. I, too, am fed up with local neurologists. I have an appt in Pittsburgh at end of month with a doctor that specializes in CIDP. I’ll post if I think he will be an asset to my care.

Take care! Chris


#6



Nana Chris said:

I live near Greensburg and was diagnosed in 2007 with symptoms starting in 2001. Very Frustrating. I, too, am fed up with local neurologists. I have an appt in Pittsburgh at end of month with a doctor that specializes in CIDP. I'll post if I think he will be an asset to my care.

Take care! Chris

#7

Chris,

Would it be possible for you to give me the name of that doctor ? I am really in need of another Neuro since ny current treatment will be ending in a few weeks and I don't know what the outcome will be.

Without another Neuro to guide me and not knowing what the next month may bring, I am between a rock and a hard place not knowing what treatment options I may have.

Just don't want to fall apart physically and not have a Neuro to turn to.

Thanx KENNY


#8

You may have to try Geisinger Medical Center in Danville PA. or travel to New York state to get one who knows his butt from a hole in the ground, or possibly Michigan. Gary


#9

Be very thankful that you are still with insurance! My employer placed me on FMLA leave and gave me the income insurance... ( a small amount to help my premiums get paid while I am off work) But that only lasted as long as the FMLA and that was only 13 weeks. No extensions. Of course, I could maintain my insurance if I keep the premiums paid up, but with not working, I fall into another category that makes me have to pay the full premium amount... about $500.00 a month, give or take... while I'm not working or making any income. The only income I have now is the partial disability through AFLAC. I signed up for full disability, but the agent who sold it to me turned in paper work for Partial and that doesn't touch my monthly expenses not to mention a huge insurance premium. While I've gone through the majority of my testing now... ( I think... I hope ) I still have to face the treatments, and some of them, I understand are at a huge cost. I have nothing. I've signed up for assistance where I could, but things do not look good any time soon. I'm concerned if I will even be able to get the treatments without insurance or if I will be cut off period. Are there programs that anyone here may know of that can assist with the costs of the treatments to someone who, due to this condition, has lost their only source of income and insurance? ~ Sis



Lisa Jakee Hilton said:

Hi Kenee:

I am in the same boat as you; except I was diagnosed 1 year ago with CIDP. The only treatment that I feel truly helps is IVig and the last time I received it, I developed a blood clot in my arm where the infusion site was and was hospitalized and put on blood thinners. Since then, my neuro will not put me back on IVig because she says it's too risky for another blood clot. Well, if I'm already on blood thinners, what's the likelyhood I would get another clot? My infusion RN said it was a human error and does not believe it was due to the IG. So, I have an appointment with a specialist out of Wayne State University - GBS/CIDP Center for Excellence tomorrow morning 1/31. It is so hard to find anyone who understands what we go through and all the complexities that come with it. My employer (a hospital) is becoming frustrated with my intermittent days off due to side effects, doctor appointments, treatments, etc. If only they knew how incredibly frustrated I FEEL! I am the sole supporter of my daughter and myself. I need my job and my health benefits.

I hope some of the people on here can help you with finding a good solid doctor who will understand this goofy disease.

Lisa in Mich


#10

you still looking for a CIDP doc?

kenee said:

Chris,

Would it be possible for you to give me the name of that doctor ? I am really in need of another Neuro since ny current treatment will be ending in a few weeks and I don't know what the outcome will be.

Without another Neuro to guide me and not knowing what the next month may bring, I am between a rock and a hard place not knowing what treatment options I may have.

Just don't want to fall apart physically and not have a Neuro to turn to.

Thanx KENNY


#11

Is this doctor/hospital close to you?

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 ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■


#12



Sis said:

Be very thankful that you are still with insurance! My employer placed me on FMLA leave and gave me the income insurance... ( a small amount to help my premiums get paid while I am off work) But that only lasted as long as the FMLA and that was only 13 weeks. No extensions. Of course, I could maintain my insurance if I keep the premiums paid up, but with not working, I fall into another category that makes me have to pay the full premium amount... about $500.00 a month, give or take... while I'm not working or making any income. The only income I have now is the partial disability through AFLAC. I signed up for full disability, but the agent who sold it to me turned in paper work for Partial and that doesn't touch my monthly expenses not to mention a huge insurance premium. While I've gone through the majority of my testing now... ( I think... I hope ) I still have to face the treatments, and some of them, I understand are at a huge cost. I have nothing. I've signed up for assistance where I could, but things do not look good any time soon. I'm concerned if I will even be able to get the treatments without insurance or if I will be cut off period. Are there programs that anyone here may know of that can assist with the costs of the treatments to someone who, due to this condition, has lost their only source of income and insurance? ~ Sis



Lisa Jakee Hilton said:

Hi Kenee:

I am in the same boat as you; except I was diagnosed 1 year ago with CIDP. The only treatment that I feel truly helps is IVig and the last time I received it, I developed a blood clot in my arm where the infusion site was and was hospitalized and put on blood thinners. Since then, my neuro will not put me back on IVig because she says it's too risky for another blood clot. Well, if I'm already on blood thinners, what's the likelyhood I would get another clot? My infusion RN said it was a human error and does not believe it was due to the IG. So, I have an appointment with a specialist out of Wayne State University - GBS/CIDP Center for Excellence tomorrow morning 1/31. It is so hard to find anyone who understands what we go through and all the complexities that come with it. My employer (a hospital) is becoming frustrated with my intermittent days off due to side effects, doctor appointments, treatments, etc. If only they knew how incredibly frustrated I FEEL! I am the sole supporter of my daughter and myself. I need my job and my health benefits.

I hope some of the people on here can help you with finding a good solid doctor who will understand this goofy disease.

Lisa in Mich

Lisa,

Have you seen your Wayne State Dr. yet? I also went to the DMC for my CIDP care. I have been in remission for over a year. The staff is wonderful. Stacey Masse (pronounced like 'moss) is the nurse that i worked with. My Dr., Richard Lewis is now in California. But all the doctors at Wayne State are great.

Ivy, also in Michigan (Lansing)


#13

I've had excellent treatment at MUSC Neurology Dept..I've had CIDP for a number of years but was not diagnosed properly until 2009 when I saw a Dr. at MUSC.



cidphubby said:

My wife is in exactly the same situation. Had CIDP since '05 finally diagnosed 10/12 but now the neuro wants to just text book her. She's one of the rare that present with pain. So if anyone has any recommendations for SC we'd love to hear them.

Thanks!

CIDPHubby


#14

Did you find a new neurologist? I live near Pittsburgh if you want my Dr. phone number let me know

Lisa.


#15

Thanks Jack. Actually the Head of Neurology at MUSC "Streeted" her in '05 so MUSC was not going to be an option. It's possible that they have gotten better but that really leaves you with bad feelings!

Thank you!

Jack said:

I've had excellent treatment at MUSC Neurology Dept..I've had CIDP for a number of years but was not diagnosed properly until 2009 when I saw a Dr. at MUSC.



cidphubby said:

My wife is in exactly the same situation. Had CIDP since '05 finally diagnosed 10/12 but now the neuro wants to just text book her. She's one of the rare that present with pain. So if anyone has any recommendations for SC we'd love to hear them.

Thanks!

CIDPHubby


#16

Check out the GBS CIDP foundation international they certify centers for excellence. You can find them on line.