Very long hard road and no answers yet
 

My name is christopher and i am new to the group. I wanted to find a place to exchange ideas and info. He is my background and where we are at today.

About twice a year for last 10 years I have developed an issue where i could not swallow that lasted a month and went away. Each time I went to gastro docs that ruled out reflux. After a couple years they then moved to the globius hystericus, or the its all in your head and take this xanax/ativian. This only made me see visions of my dead grandmother and didn't help me swallow.

In aug 2009 the swallowing turned on, and it didnt turn off. 40 days with no food intake and last 10 days on water lead them to finally at my begging to insert a peg tube. the tensilon test was iffy and the electrical test was iffy, and both neuro guys were not willing to say i had MG and wanted to me go else where. This all happend during the long time between aug 2009 and now, and I have an appointment with mayo clinic on aug 24th. Almost a year after this all started really bad.

A few notes on what I have observed. Heat outside cause me to get worse. I will get really tired and the swallowing goes backwards. I can swallow more and better when i get up and this decreases as the day goes on. They allowed me to try mestinon 60mg 3 times a day. I really can not tell a difference but being a RN i tried 120mg 3 times a day and i still can not tell a difference really but from reading other post bout how it would make you sick if you didnt have MG, I dont feel a thing. It does not make me feel bad and it does not make it so that i can eat normal either.

Mayo clinic agreed to see me based on my records and my personal documentation. When they said it was in my head I took detailed personal notes. Every flare up can be tied to an event...my dad getting cancer, each time he came out of remission, his passing away and extreme heat of july/aug. In my heart I feel like I have MG but the doctors in Memphis just seem to drag their *** and don't seem to be taking this serious. My Internal Medicine doctor is great and has helped me in ways above and beyond a what a doctor normally does, even giving me some testosterone to help combat the fatigue. I know this may not sound as detailed as some can provide as i did not want to over kill being new, but i hope i am on track to getting better. I wake up every day feeling like i just worked a 48 hour shift. It is a conscious act of my will to do anything in life and the feeding tube is irritating at best (although its my new best friend). I am very frustrated since I have very good private insurance but feel like i have been kicked to the next doctor because this is not a cookie cutter diagnosis and requires someone to think outside the box. any input would be welcomed, and sorry if the post was a bit long. I look forward to helping others here when my condition is confirmed and i begin to learn the ropes of my new life as well.

christopher

Hi Christopher and welcome to the site. You have been through a lot, I feel for you. I know the "diagnosis area" can be challenging and exhausting (mentally, spiritually and physically). This site is a wonderful place for information and support.

Do you have a good support system in place? Do you have a neuromuscular neurologist in your area?

I am sure many others will offer their thoughts but I just wanted you to know that you do not walk this road alone. We are here for you! Take care ~ Melanie :)

Hi Christopher,:hug: Make sure to do a google search for different forums to get information from many different MG'ers.
Also, make sure to check out the national Myasthenia Gravis organization at
http://www.myasthenia.org/

I know many have or had problems getting a diagnosis. I once heard an MG expert explain, that doctors want to see a Black and White result, mostly because the meds they give us are very serious, and they don't want to give someone these meds who may not have MG, and of course there is always the law suit issues.

Have you've seen an Myasthenia Gravis specialist, or a Neuro Muscular Specialist. If you haven't, you can find that info either at the web site above, or throus your local MDA. Either are usually more than willing to help.

One of the very things that sent me to the doctors was swallowing issues. Choking became my life, I don't miss those days at all!

Way before the Swallowing issues started, my legs would give out, I'd drop things, fall easily, so tired all the time.

Please feel free to pm me anytime you want. I'd be more than willing to help in any way I can.
Also I have many friends on facebook with MG. People who've had MG for many many years. Let me know If you'd like an introduction.

Best of wishes.
Remember "GOOGLE" and gather as much info from as many MG'ers as you can, from different place. Also, your MDA may know of a support group close to you!.
Love Lizzie
P.S. have you been tested for Narcolepsey? Many symp. are the same as MG. Or like me you could have both.

I have seen two neurologist and both were not really comfortable giving me the diagnosis. i go to mayo clinic in aug (a year after this all started). i read on some of the forums that mestinon if given to a non mg person will make them sick. i can take up to 180mg and not get sick at all but feel slightly better for bit, but it does not drastically improve my swallowing. i eat fine when i get up, gets worse as day goes on. i have periods of weakness really bad. cutting grass in heat makes all this worse. not know really bugs me i guess so thought i'd see if telling my symptoms to those that have it helped me in feel like i'm heading in right direction by seeing the MG specialist at mayo

It certainly sounds as if MG is a strong possibility. Unfortunately, it is a diagnosis that is arrived at by ruling out just about everything else. The fact that you are able to take such high doses of Mestinon would suggest that you are looking at an MG diagnosis.

Many doctors will tell you, "You really DON'T want to have this" (as if they think that we really WANT to be sick), but they don't take into account that KNOWING what we have is half the battle. Just knowing that it ISN'T all in our heads - that we have a name for what has been causing all of our symptoms - means having a definitive "jumping-off" point from which all of our future medical decisions can be made. That data point is HUGE. I'm not sure that doctors "get" this, unless they have been in a similar position themselves.

This is a great group, with lots of information and really nice folks. I hope that you get some answers really soon!

Sorry for the patchy story. But the mestinon is not currently being given to me anymore. The first Neuro guy ran a million test and only came up with what I did not have. Once he ran the antibodies test and it was negative, since the swallowing did not return totally on the drug he said it was not MG and washed his hands of it. I worked with my Internal Med doctor who was convinced it was some kinda of autoimmune and we got a second Neuro for his advice. He ran the electrical study and increase the dose of mestinon. I failed the test but not to his preference and he too said it was very strange to only be making me feel very weak with fatigue and only causing swallowing issues and washed his hands of it. Both of them basically wanted me to go to someone else. My internal med doc said mayo may be my only option here because Memphis has a brain drain on doctors with specialties on such rare disorders. All of this has played out over a year.

Its very frustrating to read the about MG and not really see alot that just have the swallowing as their main complaint (with fatigue). But nearly 60k in tests and hospital stays and we have ruled out everything else it could be. My biggest fear is those drug cocktails in pill form. I have not swallowed a pill in 10 years (since this start back then in much milder forms). gastro ruled out everything that could prevent that and was the ones that basically said this is all in your head and you need some good psych meds.

I know it sounds very strange but I am ready to put a name to all this and start working on something that can help before i end up losing my job and private insurance. This episode was the worst ever and put me out of work for 8 months, so they will not allow me another extended leave like that.

i know it may be long shot but does anyone else have a peg tube? I really dont like it but its my new best friend i guard with my life. I would love to find out if anyone has any luck with mickey buttons as opposed to the bulky peg tube.

christopher