Mayo Clinic, Johns-Hopkins, Cleveland Clinic type centers; experiences/advice?

[Amy Cessina]

I went through 4 neurologists before I found the “right” one for me. I chose NY Presbyterian /Columbia neurology in NYC which  is top clinic in the country. You definitely can see the difference with the care and knowledge. Some of my other neurologists kept telling me they didn’t feel comfortable treating me since they didn’t have experience with MG. I’m very happy . My neurologist tells me people fly in from all over the country and world to that clinic and they also work with your local doctor in case you have a exacerbation. Works well  all the way around. I’m only about an hour away so it’s not much of an inconvenience for me to go there.

[BBernadette]

Hi,

It sounds like you definitely need to plan a trip to a specialized center to obtain appropriate care for your MG.

I was seen at Mayo Clinic after visiting numerous neurologists in my area for a number of years.  I never received a presumptive diagnosis until I was evaluated at Mayo Clinic.  I am double seronegative so many neuros in the area didn’t feel comfortable initiating treatment.  I was evaluated by a neuromuscular specialist at Mayo and also a neuro ophthalmologist (due to my diplopia and ptosis).

Mayo initiated treatment and worked with my PCP back home coordinating care until I was able to establish care with a neurologist in my area.

I think if you requested to see a neuromuscular specialist and an ophthalmologist, that would cover your primary concerns.  The neuro I saw at Mayo also ordered additional testing to rule out other diseases.  I was very pleased with the process and they got me on the road to appropriate treatment.  I’m not sure where I’d be health wise if I had not made the trek to Mayo.  I was there for about 5 days.  My doctors back home followed up with my Mayo neuro as needed.

[Michelle]

Thank you so much for the information.

I am currently completing the initial questionnaire for Mayo to begin with a general exam.

I am so glad to know of your experience and that the neurologist looked at other ares of concern.

Did they do testing for your thymus?

Which Mayo did you go to?

Thanks so much and best of luck to you,

Michelle

 

[TheresaG]

Bernadette

can you explain what double Seronegative means?

thank you.

[BBernadette]

ThereseG,

I was told by my doctors that it means that I have no detectable antibodies to Achr and MUSK antibodies. I was also negative for several other antibodies that they test for with MG (LRP4 and anti-titin)

B.

[Jack Stayton]

Wow, I’ve never heard of LRP4 and anti-titin. My neurologist has never referred to anything like that. I’ve been told I have both Binding and Modulating Achr and do not have MUSK. I keep learning on this forum, thanks.
Jack

[Robert B.]

I think you’re making a very wise decision, Michelle, whether it’s Mayo or some other quality medical clinic.

I’ve had generalized MG for 8 years – and a very severe case. I receive four IVIG infusions every 28 days and have had no deterioration so far. It’s a miracle drug for me. Plus I take four Mestinon tabs per day.

To give you an example, before receiving treatment, both eyelids were virtually closed and what little vision I had was “double”. I couldn’t raise my arms above my head and couldn’t walk but a few steps before being totally fatigued.

I’m not saying I’m perfect with IVIG infusions, but I have a fairly normal life. My eyes are fine. I get fatigued very easily, so I have to take it easy. I’m on a 14 day treatment cycle with two treatments back to back, every other week. I’m very fatigued on the last two days, but the next treatment picks me back up again and I start all over again.

My point is, don’t give up hope. I bet there’s a solution that will give you back more of your life.

Robert

[Peter Livingston]

My suggestion is get the full general work up.   Find out everything now that might be impacting/complicating your condition or future treatment. Get a really strong basis for going forward.

 

[Norm]

I think the most important thing is to be seen by a neurologist who has worked with many MG patients. Everyone’s symptomatology is unique, which an MG-experienced neurologist will appreciate.

[Douglas Manning]

A reply another forum member Norm is so valuable I think. That is to trust your care to a neurologist who has experience with patients with MG. If you are fortunate to have that specialist close to you, so much the better. In my case we reached out to Johns Hopkins neurology for a review of my case when it seemed that I was at point where progress was stalling.

Our experience with Johns Hopkins was less than optimal to be honest. It was a multiple visit process to diagnose that I had generalized MG – surprise, I did, both clinically and via anti–acetylcholine receptor (AChR) antibody (Ab) testing. It felt like I wasted several months and we did not arrive at a better endpoint. At the time the team at Johns Hopkins seemed positive that Rituxan therapy was essentially failsafe. For me it was not. We did follow their recommendations however and for a second time proved that it was not the answer for me.

What we found was that the care team I had in the Geisinger Medical Center was experienced, the most knowledgeable and provided the most holistic care for me. Additionally I am most blessed to have a primary care provider who is both a partner and coach. So, my best advice would be to find a primary care provider who can be your guide and coach as you navigate your care journey. I have access to the best specialist I can imagine, but it is my primary care provider who has taken the time to helped me “call the shots” in my journey.

[Michelle]

Douglas,

Thank you for your reply and sharing your experience with me.

It is so helpful to know that others share your experience and can relate. It isn’t “in my head.”!

So far, the neurologists I have seen are helpful. One wouldn’t answer any of my questions and the other is very condescending. She told me, that we all have one eye that’s a little droopier than the other! I wonder if we all have double vision sometimes?

My primary is very helpful and I think would guide my care, but thinks that Mayo Clinic is a good place to begin.

Best wishes to you!

Michelle

[Jane Renkiewicz]

I am fortunate and have had a great neurologists in Cincinnati but when my MG was at its worse, I went to Cleveland Clinic.  Dr. Kuensler and team came up with a new treatment plan and I’m symptom free.  I do have both the Musk MG and the general MG with weakness and fatigue in arms and legs.   Would highly recommend and get a complete work up.

Jane R

[Jack Stayton]

Michelle, I’m interested in following your journey. I too am in NM and have asked for a referral to Mayo. So far I have not been given one, however I am being referred to UNMH so will see if they have a neurologist familiar with MG. I think I have a mild gMG but I find out more on this forum than I get from my current neurologist. When I first went to him he referred me to a neurologist that specialized in MG but after about 4 months she closed her practice. That was in 2019 and since then I have only seen my assigned neurologist once! So good luck.
Jack

[Amy Cessina]

Just curious if anyone is having trouble with appointments at these large hospitals due to the recent covid surge?
But just to second others, gets the most extensive work up your insurance will allow. It gives you the most information. And yes many of these doctors are condescending. Go with someone you can talk to and work with. Don’t put up with nonsense.

[Ronald E. Clever]

I have been treated by Dr. Wagle at John Hopkins from the beginning and could not be happier. She is very attentive and present with my therapy. My local neurologist didn’t know what was going on and I went to John Hopkins on my own and have never looked back. I am not in perfect health of course but I am doing pretty well. I have other issues besides MG.

[George Tvardy]

Michelle, I was diagnosed with Generalized MG in May, 2020.  This April, I went to the Cleveland Clinic for a MG consult with Dr. Steven Shook.  I was VERY IMPRESSED with his knowledge, thoroughness and bedside manner.  His specialty is MG, and what he explained to me was that most local neurologists do their very best in trying to treat MG, but their knowledge base is limited given that they may only see a couple of individuals in their  entire practice with MG given that MG is a rare disorder.  Since he and others at major clinics specialize in MG, they have extensive specialize training in the treatment of MG and can better individualize your treatment regimen based on your symptoms and challenges.

I would recommend that anyone with MG consider going to Mayo, Cleveland Clinic,  Vanderbilt, or other top notch hospitals for at least an MG Consult, especially if you live close to one of those facilities.  Although I live in Tennessee, I grew up in the Cleveland area and so my wife and I could stay with family, which made my trip there much more comfortable.

Ot is amazing how well the Cleveland Clinic staff treat their patients and how patient care and positive interactions with staff is prioritized.  And I’ve heard that it is the same at Mayo.  Personally, I don’t think that you can go wrong in setting up at least a consult to learn more about your treatment options.  I hope that you can get the advice and care that you are looking for and that you deserve.  Good luck and God Bless!

[George Tvardy]

Michelle, I was diagnosed with Generalized MG in May, 2020.  This April, I went to the Cleveland Clinic for a MG consult with Dr. Steven Shook.  I was VERY IMPRESSED with his knowledge, thoroughness and bedside manner.  His specialty is MG, and what he explained to me was that most local neurologists do their very best in trying to treat MG, but their knowledge base is limited given that they may only see a couple of individuals in their  entire practice with MG.  Since Dr. Shook and others at major clinics specialize in MG, they have extensive specialized training in the treatment of MG and can better individualize your treatment regimen based on your symptoms and challenges.

I would recommend that anyone with MG consider going to Mayo, Cleveland Clinic,  Johns Hopkins, Vanderbilt or other top notch hospitals for at least an MG Consult, especially if you live close to one of those facilities.  Although I live in Tennessee, I grew up in the Cleveland area and so my wife and I could stay with family, which made my trip there much more comfortable.  That’s why I personally chose the Clinic.

It is amazing how well the Cleveland Clinic staff treat their patients and how patient care and positive interactions with staff is prioritized.  And I’ve heard that it is the same at Mayo.  Personally, I don’t think that you can go wrong in setting up at least a consult to learn more about your treatment options.  I hope that you can get the advice and care that you are looking for and that you deserve.  Good luck and God Bless!

[Eddie]

1st, You are not alone and you are going to get BETTER❤! 2nd my MG started  the same way,  w/ occular. And the same treatment was all I received. I Long story short. I found a Neurology  dpt and I was prescribed  40mgs 1xdy of prednisone AND Monthly infusions of IVIG, in 2 months I was 80%, 3 months 99%  BE very aggressive with your Neurologist about asking for this specific cocktail. It works!  One of my daughters is a pharmacist, She was the one that did the research and found out about the IVIG.  ALSO, small doses of prednisone don’t work. It has to be the highest you can be prescribed.  Also I am taking  testosterone. Again prescribed and administered at a urology men’s wellness facility. My PCP was skeptical about it, which is normal (some are not up on the LATEST and INNOVATIVE) practices for us with the MG.   My double vision goes in and out but is getting better. And I still also take mestinon,  it helps. Last: I am a 66yr male, I am in just as good health as the average 40yr. Work out when you get better and ALSO if the Mayo can take you in SOON, GREAT. IF NOT LOOK ELSEWHERE NYC, NJ, MASS.

The reason I say that is..

Some of these big name  hospitals are too big to serve you right and right NOW. GOD BLESS YOU AND STAY PERSISTENT AND STRONG ❤❤❤👍🏻👍🏾👍🏿💪💪🏿👍