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sdsyd

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Hi everyone. I have been trying to wait until I know something more definitive to post again, but decided to go ahead and post. To make a long story short- my symptoms have begun progressing quite quickly since our return from Mayo clinic. Since then- my (R) hand has become involved and the left leg has worsened. Cramping has become quite a problem and my ability to function at work and home is greatly reduced. I went back to the Dr. last Thursday and she took a look at the atrophy and weakness and has made a decision that it is NOT realted to the B-12 deficiency. I think she was quite shocked. Based upon all of this, plus all of the tests I have undergone she feels certain it is either MG or ALS. I went and had a full MG panel as well as some other immuno specific labs and will hear the results sometime this week, as they have to be sent away. I began baclofen at 5 mg 2x daily and it is helping with the cramps already- thankfully. My neck is extremely sore and was warned that baclofen could destroy some of the tone I was utilizing for my "good", but am going to keep on it until they get the dose titrated correctly.
I plan to still work until I know something more, as MG is highly treatable, and my team leader at work is supportive and says we will just take it a day at a time and let me know that I don't need to hide it anymore as they could "surmise" by watching me struggle the last couple of weeks that things weren't going well. I have bruises on my legs from running into things at work, because I have to try and keep a high pace up and now have alot of difficulty moving fast and then trying to slow, stop or turn mid movement. Our therapy gym is very crowded with patients, wheelchairs and equipment and you need to be able to be pretty swift to move among all of this.
I have only shared this new update with a few people as I hate having people worry, and hate admitting I can't do something, but I consider many of you folks here my friends. I have wanted to reply to many of your posts, but I have been in "hiding" on the boards due to the fact that I don't want people with anxiety issues to feel they have been misdiagnosed, but in my specific case- for whatever the reasons-the neuro at Mayo wasn't all that concerned with my symptoms, especially since my EMG was within normal limits. She shared that this sometimes does happen. I will follow up wtih my neuro and gp once these test results come in and go from there.

I feel sort of like I am grieving right now, but Dan and I are also relieved to finally be getting closer to answers.

Thank you for listening once again and sorry I didn't keep it short like I said.

Cindy
 

BethU

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Hi, Cindy ... I am so glad that your neuro is exploring all the possibilities, especially being so thorough on MG. I will be praying that you will get good news on your tests, and that treatment will begin soon! From what little I know, it is my understanding that a sore neck and shoulders are often symptoms of MG, as it's hard work for those weakened muscles to hold up the head.

It sounds like you are in very good hands.

Good luck!
BethU
 

awieleba

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HI Cindy,

I hope that you get answers soon. I would not post because of others anxiety on a mis diagnosed! IF you need support and a place to vent or grieve, if you will, then this is the place.

I hope you are doing ok with all this.....it can be hard with not knowing.

I dont have a lot of time to post so take care

april
 

CindyM

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Hi Cindy- I'm sorry you had to come back, but I must admit I missed you! the ups and downs of all this is un-nerving, to say the least! I hope they get answers for you soon! Hugs, Cindy
 

olly

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hi cindy

i am so sorry for the distressing time you are going through.
hopefully you will get more answers soon.
one quick question to anyone...........can you get atrophy with mg?
take good care:-D
 

sdsyd

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Hi guys~!
Thanks for the encouragement and support. This is sort of a forum where "it takes one to know one!" LOL Its nice to have a place to come where people can say " Hey- I CAN imagine what you're going through, because I am too!"

Today I am not sure if I have the stomach flu or if it is the baclofen. I started it Fri. today I woke up with horrible stomach cramps and have made multiple bathroom trips and am nauseated. Anyone else ever have this experience with baclofen?

Thanks again- it means alot to me to have this forum to come to.

Cindy
 

planningguy

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Cindy,

Best of luck in finding the answers, and I am hoping for the best possible news for you. As someone with pernicious anemia complicating the diagnosed process, I am also interested in hearing what the ultimate outcome is.

Robert
 
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lovelily

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Hi Cindy!

I hope the doctors can get to the bottom of all that is troubling you, soon! Keep us posted how everything is going.
 

sdsyd

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On a positive note- my son came home sick from school today. Not that I am glad he is sick, but now I know it IS the stomach flu and not the Baclofen. :eek:)
 

CindyM

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Let's hope nobody else in the family gets it! Feel better soon!
 

awieleba

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cindy~

it is funny that we think everything we feel or have may some how be related to our 'illness' and it may just be some normal old thing that we would of had anyway..hard to tell the difference sometimes.

It is bad when kids are sick, but that is when they can be so sweet and cuddle and not jump from the ceiling fans!
 
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