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New to Lems
Hello everyone
My name is Trish and I was diagnosed with Lem’s a little over 8 years ago .
I unfortunately today have a lot more pain now then I did 8 years ago & I do notice its getting a lot worse
I have tried taking Firdapse it did help a little , however the side effects were not pleasing for me.
Especially when you have a neurologist who just refused to monitor my dosage & my health to say least .
This journey of Lem’s diagnosis has been a complete nightmare for me .
There has been Dr’s that I have trusted that have also let me down in this journey ,
to a Health care system that has absolutely no idea how to treat this condition or the person it self.
So I decide to fight back !
I contacted the Department of Health and asked ?
How could A Dr dish out over 200 pills a month of Firdapse medication & on top of it tell you that you tested positive for a thyroid disease (Hoshimtos ) & NEVER treat the new condition at all & leaves you in this state without monitoring your labs or should I say at least draw some new blood and see how the patient is actually responding!
Yes this is an on going investigation, which I appreciate the State doing on my behalf.
But that is not going to make me better or cure this Disease .
I need a place for support , information and most of all compassion.
I refuse to give up and believe that there are No Dr’s out there to treat me .
So I’m asking anyone in this forum for any information to find a New Neurologist On Long Island NY.
I hope you all are having a good day & enjoying the blessing God has given us today to be here.
Thanks Trish
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5 Replies
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Hey
@trish724
Welcome to our community! I’m so sorry to hear that you have had such a hard time with treatment and doctors that are not familiar with LEMS. We have members from all over the world. I will reach out tomorrow and see if anyone on the forum is from NY that may be able to point you in the direction of a good physician.
Do you have antibodies for calcium channels? Usually that is the diagnostic criteria for LEMS and is separate from antibodies for your thyroid. I also have Hashimoto’s and several other autoimmune diseases. Sadly, autoimmune illnesses tend to flock together, so if you have one, it’s likely you’ll have more at some point in your life. The more you have, the higher the risk you have for developing another.
There are definitely doctors out there that are familiar with LEMS! I’m hoping you might live near one of our members so we can direct you to a good physician. Have you been able to try anything else aside from Firdapse? Have you taken Mestinon or any immunosuppressants or IVIG? These are all treatment options for LEMS patients!
We have a ton of information available to you about LEMS including treatment options!
I hope you find some of this information helpful and if you have any specific questions, my co-moderator @pricewool and I are happy to answer any of them for you!
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@trish724 Patricia, I am looking for a recommendation in your area. You can also go to firdapse.com and they have a physician finder. I have no clue whether the results yield LEMS knowledgeable neuromuscular neurologists.
If I get a personal recommendation. I’ll reply here. -
@trish724 here’s one personal recommendation from someone diagnosed.
Hi I’m from Long Island and was just diagnosed a couple of weeks ago. I saw Dr. Anthony Geraci in Great Neck. 516-325-7000
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Hello Price
Good afternoon ,
I appreciate you reaching out and providing the information, unfortunately I saw Dr Geraci long time ago for a second opinion and he unfortunately told me he didn’t think I had LEMS LOL ?
Strange as it would be or sounds I have tested positive for LEMS for years , Actually Mine is the P/Q subtype.
I was first diagnosed by Dr Gudesblatt at South Shore Neurologic ruffley 8-10 years ago.
I absolutely loved this Dr until he sadly left me completely vulnerable and ill to say the least .
That is why I reached out to the Department of Health , I simply had enough .
I went to Dr Geraci for a second opinion so I don’t know much more to say about WHO specializes in this Disease .
I will keep doing what it is I have for over 10 years now which is take care of myself unfortunately to the best of my ability since I have been left to fly solo.
Besides theses two Drs I mention there is truly no one else who knows how to treat me here on Long Island & that is really sad.
But thank for being here & just for the record I did reach out to Firdapse when I was on this medication , Even spoke to a patient advocate explaining that this Dr is NOT monitoring me at all & truth be told NOTHING was done about.
So now I have no Dr, No medication to control my LEMS and no support out here sorry to say .
Im completely Grateful for your forum as you can tell it gave me a chance to get it off my chest LOLThank you
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Well this isn’t good news. I’m sorry these physicians have not worked out for you @trish724. Perhaps you can search for a doctor in the Firdapse physician database in another metro area in the northeast. Mayo Clinic is in Rochester. You know they know LEMS!
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