John Hopkins experiences

[mike123]

Hello,

I was wondering if anyone has gone to John Hopkins and if it was helpful for them, especially those with undiagnosed cases? I'm considering making the trip if I can get an appointment.

On another note, has anyone had butt problems? I know it sounds silly. But I remember reading a thread here that someone had butt atrophy/wasting.

It's very uncomfortable for me to sit, and I don't mean because of the tailbone. The cushioning is not there, if that makes sense. The doctors ignore me when I bring this up. It would be funny if I weren't falling apart.

Thanks for your help.

Tom

 

[Al]

My butt fell off long ago. My Roho cushion makes life in a chair bearable.

AL.

 

[Alyoop]

It was probably me. My most affected muscles are my gluts. I have very little padding and get pins and needles now when I sit too long. It makes walking up slopes very difficult, even gentle ones.

 

[rose]

I go to Johns Hopkins, and in my opinion it is well worth the effort of travel, etc. You can self refer, but it goes quicker if you can have your doctor contact for a referral. Usually whatever specialty the doctor is who refers you, is the specialty department you will be seen at first, then passed on to others if needed.

One of our forum members recently got answers after a long time of limbo by going to Hopkins, (Jannie M )

FYI I ended up there after my NYC doctors wanted me to go. I was given a choice of Mayo or Hopkins, but was steered toward choosing Hopkins, and I have no regrets.

Good luck to you.

 

[hn7609]

I do have a Hopkins experience that I can share. I became involved with them thru their second opinion program. I gathered all of my records and sent them along with a check to get a second opinion from them since I felt I wasn't getting anywhere with my then current neurologist. Within a week they contacted me and told me that they could not render an opinion and that I really needed to be seen in person. They were very helpful with a concierge service that set up the appointment for me (about a 1 month wait). I had a physical exam in the morning which seemed to be very through and then an EMG in the afternoon. The Dr. who gave me the EMG was seemed very professional and seemed very experienced with the EMG. He had a student in the room with him and was quizing him through out the exam. I picked up from his conversation the term "Motor Neuron Disease" a few times. At the end of the EMG I did ask the Dr. for his opinion of the results. He said that he would have to consult with the other Dr. and that they would send me a report. Went home that evening and looked up Motor Neuron Disease and just about fell in the floor when I found out that it is just another term for ALS. This was the first mention of ALS that I had heard.

Went on a cruise the following week with my wife did a lot of soul searching, crying, etc. in anticipation of getting the official report from Hopkins. No report when we got back. Waited a week then called....... was told the Dr. was on vacation for 2 weeks and that he had not signed the report yet so it was not final. Called back 2 weeks later and was told that it was sent. Called back 1 week later told them that I had not received it yet, they said that they would send another. Called back 1 week later and told them I still had not received it and could I please talk to the Dr. I was told that the Dr. would call me the next day to speak to me. Waited 2 days by the phone and never got the call. Called back again and again was told that the Dr. would call. Waited a few more days but no call, and then the report finally did arive. It was hard for the layman to understand as it was heavy in medical jargan. We spent a few days going over it but could not derive a definite diagnosis from it. Called and asked to please speak to the Dr. again as we were unsure of his diagnosis. Next day he did call and in a matter of fact way told me that I had ALS. I had questions that I wanted to ask but I was so taken back by his words that my throat just closed up and I just couldn't speak. He told me that he would send a perscription for Rilatek and that was it. I have not gone back to Hopkins.

I do not think that my experience with them was typical. The exam and tests that I got there were top of the line. The way they dealt with me was bottom of the barrel. I took my report and am now involved with the ALS center at UVA medical. Their program is supposed to be among the best in the country. I know that my dealings with them have so far exceded my experience at Hopkins.

I wish you well there

 

[mike123]

Thanks for the replies. Is Hopkins like going to Mayo where you go around to a bunch of doctors, like a merry go round hehe? I was thinking I would just make an appointment with one of the neurologists. I'm wondering if I can request a specific doctor or will I be waiting years if I do that? I've made the mistake of taking random doctors who just got out of college and want to avoid that.

 

[Gretchen]

OMG, as a physician I cannot grasp the cruelty and lack of empathy sent your way! That physician and his clinic should have called you every day and given the updates until they could make the diagnosis. They should have been there for you each step of the way and helped you through the process of accepting the diagnosis. How horrible and so unfair.

 

[tammyg]

My dad went to Hopkins, after his DX they referred him to Univ of Md
ALS Clinic / Univ of Md Speciality Hospital 601 S. Charles St, Balto. md 410-547-8500
These people are great, helpful and compassionate, they return phone calls and also fix problems quickly. My dad also got his PEG there.

Univ of Md. Dept of Neurology, 22 South Greene St, Balto, md 410-706-6689 DR. RUSSELL
I think this Doctor can help you. All these hospital's are with in a mile of one another and work together.
Univ of Md great hospital, Good Luck