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New here, need a chicagoland specialist
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Hi there,
I was diagnosed with MG this past December after a horrible episode of my Synthroid meds not Absorbing and my TSH levels were one of the highest my Endo has ever seen, I became exremely Lethargic and was having weakness. My PCP sent me to my endo who ran all sorts of tests and came back positive for MG.

They sent me to a Neuro and I thought I would be treated and get better. However it has been nothing but pure frustration. I am on Mestonin and was supposed to take 30MGs every 4 hours, it did somewhat alleviate the weakness, I was able to get through 2 hours of being up and about until I had to rest. It also helped with the Ptosis, my double vision got worse and my swallowing was getting difficult and I was having the worst time just swallowing my saliva. My Neuro I am seeing has been horrible at following up and when i did get a call back it was to up the meds to a full pill 60mg every 4 hours,and that cause horrible stomach issues.

I am no stranger to autoimmune diseases I am almost 27 and this is the 4th I have been diagnosed with, I have Vitiligo, had Graves disease but had Radiation to remove my thyroid at the age of 16 which means I am now Hypothyroid and on Synthroid and Cytomel(I am also missing an enzyme needed to convert T4 into T3), I got diagnosed with Celiacs 3 years ago and now MG. I feel like my body is constantly fighting something.

I was wondering if there are any others in Chicagoland that have had success or have any recommendations for Neuros or other specialists to see. I have been home from work for 8 weeks now(I work in Pediactrics and am on my feet non stop) and I am having a hard time. I am so happy to have found this site for support, with my Wedding only 5 months away I am determined to get back to feeling normal and to walk down the isle and dance the night away.

Thank you in advance!

Posted on 02/10/13, 11:58 pm
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Reply #1 - 02/11/13  7:08am
" ho Bree
I sure hope you find a good doc with patients who have MG
I have been to hell and back so I welcome you and am here for you.
Tell me your city...I will call my neuro and ask him for a nme near your house...if you would like. My daughter lives in Chicago too. Do you want tme to do call my doc for a recommendation..
Anyway....I have done it all and ma doing very well. I tink the other thins that has helped me the most if good foods.
I would recommend the book Virgin Diet. If you don't get the book...just give up gluten. dairy and artificial sweetners. I guarantee a difference.
I now eat only fruits, veggies and protien.
That have changed my life too.
Thymectomy, cellcept and prednisone have been my treat ment. I am able to do alot. It had been a long time...over 2 years to get to feeling like I do now. You need a good doc NOW
Have a geat day
Oh you can call MG foundation in Chicago.....they will have some suggestions for you too.
Ann "
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Reply #2 - 02/11/13  8:34am
" please excuse my spelling......I wish I could blame it on my computer "
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Reply #3 - 02/11/13  12:11pm
" hey Bree --

is the website for the Illinois MG group -- looks to be a pretty active chapter. If your neuro doesn't seem responsive, it's because he or she probably doesn't have much MG experience. The swallowing issues are a huge red flag for serious MG...

With this disease you have to really advocate forcefully for yourself, which is hard when you have the symptoms hitting you full-force. I was expected to arrange for a cat scan of my chest, and deal with all sorts of insurance rigamarole when I was at my worst. I finally ended up hospitalized, and everything was done all at once.

(You can chew those mestinon pills up, and swallow them with lots of yogurt or something stomach-calming.)

How exciting that you are getting married -- MG is very stress-responsive, and I bet the extra worrying is doing you no good. But happy times are ahead! Good luck, Bree! ~joe "
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Reply #4 - 02/11/13  5:01pm
" Hi Bree, follow-up with the web site for MGF that Joe posted. You should take mestinon with food. It will alleviate some of the symptoms.I hope you find a good Neurologist. God Bless.Cabbage7 "
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Reply #5 - 02/11/13  5:22pm
" Thank you all for your kind words and support! I met with my neuro again today to give him another chance and all he did was cut me off and not listen. So tomorrow I will see my PCP and hopefully get a referral to someone that will help me.

Ann- I live in Huntley a northwest suburb but we are willing to go anywhere really. We have even considered the Mayo clinic since my Fiance's family lives in Minnesota. I am gluten free for the most part since I have Celiacs, I do allow myself to cheat every now and then since I never have stomach pain or side effects from it, but I was diagnosed while having a scope done for my Hiatal Hernia, and then I had blood work that confirmed it. And no worries about the spelling I am way worse at it!! haha

Joe- Thank you for your info and support, I will look into the Illinois MG support group. I am sorry you had to wind up in the hospital to finally get everything done, I hope you are doing much better. And yes I am so excited to get married, but as it is 5 months away now it is crunch time and it is hard to get things done when i am not feeling my best. But I know it will all work out and get easier once I find the right meds.

Cabbage7- I will make sure I take my mestonin with food and hope that it will help! "
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Reply #6 - 02/11/13  6:42pm
" I have been seeing Dr john Micheal Li at Rush for 1 1/2 years. He has other MG patients. I never feel like he is hurrying through. I live in the south suburbs and getting to and from appts was easier than I thought. Good luck.
Pat "
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Reply #7 - 02/11/13  6:46pm
" Welcome here. I have Graves and MG (and a host of other autoimmunes.) I am in northeast WI, but see a neurologist in Milwaukee. I suggest finding a neuromuscular specialist.
Deb "
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Reply #8 - 02/13/13  8:58pm
" @Bree- I also live in Huntley!! :-D We're in Northbridge by Marlowe Middle School.

Congratulations on your upcoming wedding! I am also looking for a good neurologist- I saw one at Rush and one at UW-Madison and both were very disappointing with their lack of knowledge about MG. A facebook friend recommended Dr. Jiang at University of Chicago Medical Center. Another friend recommended the Medical Advisory Board for the Myasthenia Gravis Foundation of Illinois.

Let me know when you find a winner and I'll let you know if I find one- "

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