Hello,

I'm so happy to have found this forum. I'd also like to apologize if I'm not using it correctly, but I'm at my whits end. I've scanned through the threads and haven't found the answers to the questions I have.

Let me tell you a little about myself, or actually it's my mother who's been diagnosed with MG. She has been diagnosed, but that seems to be as far as any of the doctors in her area can go. She's on 60 mg 4 times a day of Pyridostigm. She has always had problems with her thyroid and is a diabetic. (not sure if those matter or not) Basically, she can't get a doctor to give her five minuets of their time to talk to her about this. She had an appointment today to see if her medications were working. There was some confusion as to what time the appointment was. She thought it was for 10:30 am, when it was really for 10:15 am. The doctor came in, checked her vitals, asked her a few questions and then said, "Ok, seems like the meds are working". My mother then started to ask a few questions and the doctor rudely snapped, "you were late, I have other patients to see, I don't have the time to spend with you now". I know she was in the wrong for being 15 min. late, however I think it was a bogus excuse for the doctor because he doesn't know a whole lot of what he's talking about and didn't want to say, "I don't know".

My mom seems like she's defeated, she's normally a fighter and is willing to get to the bottom of things. However now she just seems incredibly hopeless. So that's where I step in, I'm 26 hours away from her and feel helpless. My husband is in the military and I just can't get up there to help her. Not too sure what I could do if I were there, but I feel like it would help. So I'm searching the far corners of the net in hopes to find some answers for her. If anyone has ANY tips, help, advice it would NOT fall on deaf ears.

I guess I'm basically asking if anyone out there in the Indiana, Ohio, Michigan, Illinois area has been to a medical professional that has seen cases of MG and knows how to deal with it. My father called me this evening and asked that I try to find a doctor. He doesn't care how far it is, he will get her there. He's always been so strong and it was hard to hear him sound so upset with not being able to help my mother.

Thank you so much for taking the time to read all of that. Again any help or advice would be greatly appreciated.

Myasthenia Gravis Clinic
We have the largest Myasthenia Gravis clinic in Chicago. Our neuromuscular physicians and nurses are experts in the treatment of all aspects of myasthenia. We consult with the patient and identify an individualized treatment plan for each patient. Drs. Matthew Meriggioli and Julie Rowin are nationally-recognized experts in the field of myasthenia gravis treatment.

ResearchOngoing basic science research at the Neuromuscular Center is making progress towards a cure for myasthenia. The progress taking place in our laboratories is being applied to patients at the bedside. Patients are able to participate in the latest treatment trials in myasthenia at the Neuromuscular Center. We are the only dedicated myasthenia gravis research center in Illinois.

Our TeamJulie Rowin, M.D.
Director, ALS and MDA® Clinics

Matthew N. Meriggioli, M.D.
Head of Neuromuscular
Section

Octavia Kincaid, M.D.
Neuromuscular Fellow
Debbie Pierz, R.N., BSN
Clinical Coordinator
Judy Richman, R.N., BSN
Research Coordinator
Jessie Alverio
Administrative coordinator

Appointments
If you would like to schedule an appointment, please call 1-312-996-4780.


I personally have never been to this clinic, but I do know that Dr. Meriggoli has done several research paper & clinic trials for the MDA.


Jenna

i don't know your mom's age etc but my insurance company has case managers who can guide patients through difficult times at no charge. mine called 1 week after i was given mestinon[the same med] ,gives extra mental support, the drug prompted them to call. she is great ,researchs things, mails me things[even though i'm online] can act as gobetween with drs and pharmacies. it's just an extra set of eyes and ears to help the patient also i can vent certain things to her that i won't to my hubby or family. also there is usually low or no cost transportation available for senior citizens or disabled folks. there is also in some areas online grocery shopping for nominal fees. my motherin law was disabled at home for 1 yr with 24/7 livein aid. my mil drove me nuts!!! i took her to med appts and when she was able i found the dial a ride in her town, registered her and it cost $1 per person if you could afford it. they went to a grocery store 5 days a wk and more. one time when she went to counseling appt for depression meds she told her she never got out & couldn't drive, noone came to see me never got to store etc. when they were done woamn asked since i divvied up pills could i come in so she could explain changes-milaw said fine. then the lady started on how isolated milaw felt etc-what a shock she got when i said i had found solution for over 2 months now and she hadn't used it once and she wouldn't even sit outside on the patio with the aide. sorry for ramblig but hope this helps you remember depression is also a factor in chronic illness

Hi, I spoke with a relative today and she has taken her son here for a different disease, but she said the neuros were wonderful in his case.

Cleveland Clinic Neurological Institute

216-636-5860

866-594-2276 To speak to a nurse.

Good luck and I hope your Mother gets the help she needs.

Take care,
Pat

I don't have any help for you, but wanted to express my sympathy for what YOU are going through! I think it's much harder watching a loved one go through something than it is to endure it yourself (once you get adjusted to the idea that you have a disease anyway). And being so far away and trying to help must be sheer torture for you. You are a WONDERFUL daughter and I'm sure with your support even at a long distance, your parents with handle this much better than if they didn't have you!

Thank you, on their behalf, for being so caring and resourceful for them. They are very lucky to have you. There is a website you can use to locate doctors of different specialties if these other suggestions don't pan out for you. It's Vitals.com and you can search by specialty, location and even check out the ratings for their hospital affiliation and schooling. It's free. Another thing I did was a Google search for Neurologist + Denver, CO for myself and that's how I found the neuro I'm seeing now. The websites generally list their areas of interest or sub-specialty, so you want to look for a MG specialist if you can find one, or at least neuromuscular. They all seem to have some area they concentrate on, so what out for things like neuro-vascular (they deal with migraines and aneurysms) or head trauma specialties, etc. They probably will be familiar with MG but not really staying up with the latest.

Best of luck to you. Send your Mom, and Dad, my best wishes for her finding a good doc and getting wonderful treatment!