As if CF wasn't enough

[bamagirl22]

Hey there, I usually don't post on here but read threads daily. I was wondering if anyone else has Myasthenia Gravis (neuro-muscular disorder) in addition to CF. I was recently diagnosed and would love to talk with anyone who has had to deal with both.

 

[suziesmom]

Hey there, I usually don't post on here but read threads daily. I was wondering if anyone else has Myasthenia Gravis (neuro-muscular disorder) in addition to CF. I was recently diagnosed and would love to talk with anyone who has had to deal with both.

I have heard of neuro-muscular disorder. Exactly what is it and how is it diagnosed? I have heard that many people with CF have it.



suziesmom

 

[LittleLab4CF]

I wish I had a lot to talk about, but pick a topic. I was diagnosed with Parkinson's disease in 2006-7. The good news is I am able to control it without L. dopa. The first thing I did after my Parkinson's diagnosis is purchase "Final Exit" a treatise on efficient suicide. Fortunately it's gathering dust but it says something about my state of mind when I was diagnosed. Just like CF, neurodegenerative disorders seem to take their own path.

LL

 

[bamagirl22]

My CF doctor hasn't treated any other patients with both conditions and didn't make it seem common, yet more on the very rare side. So if you know more, "suziesmom" please share.

As far as diagnosis, I had developed a droopy eyelid and asked my eye doctor about it. He then had lab work done and my levels came back positive for Myasthenia Gravis (MG) so I now have been referred to a neurologist. It basically means "muscle weakness" and can affect nearly any muscle in body, most people present with eye problems first then it can progress into more. Apparently this condition affects everyone differently like CF but can become generalized and make you extremely tired and weak to the point where some start using wheel chairs and cant work. It can affect the lungs and breathing which scares me the most, even healthy people sometimes wind up on respirators. There are lots of medications to help with symptoms but most have pretty nasty side effects.

And to LL I know any new diagnosis is rough on your mental status, as my heading said "as if one thing wasn't enough".

 

[Beth F.]

It's been quite a few years, are you still on the forum bamagirl? And if so, how is your treatment going? I was just diagnosed as having MG myself (same symptoms as you, including fatigue from chewing and general overall). I still need to see a neurologist (very soon I hope) so that we can figure out what to do. I am wondering what worked for you, if anything. And did you have many complications from having both conditions? I'm hoping that maybe treating the MG will help my lung function too...

 

[suziesmom]

My heart breaks for everyone with CF and any other disease/condition that takes so much away from their life. My daughter is 24 with CF, diagnosed when she was 11. No one else that we are aware of in my husband's or my family has had it. My Mother was diagnosed back in February with Mantle Cell Luekemia. I have two good friends who were diagnosed with MS.
So far, I have not been diagnosed with much of anything and I wonder if people really realize how devastating it is to your health, your finances, and frame of mind when a diagnosis like any of these mentioned or any other kind comes into your family. You are all heroes, along with my daughter. Thanks to all of you for contributing helpful hints each day. I don't write much on here but I always read the posts.
Love to all of you.

suziesmom

 

[bamagirl22]

Hi Beth yes I am still on here and my dx with MG was only in Feb of this year (2014). I see a neurologist about every 3 months right now. He gave me a meciation called Mestinon to take as needed for now. I can take once a day or up to three times a day depending on how I feel each day. So far the most I have taken is once a day. My main areas of complaint are my eye (the original reason for dx), upper arm strength and occassinally my legs. I had a CT Scan in July to rule out a tumor on the thymus gland which can sometimes cause MG, mine was negative. Recently my lung functions have begun to drop and my CF doctor thinks MG may be the cause. He wants me to take the Mestinon daily now to see if they improve. Please feel free to ask any questions and I would love an update on you after your appt.

 

[windex125]

LittleLab4CF where do I purchase Final Exit? just curious pls PM me Pat

 

[Beth F.]

Sorry I think I read your join date instead of the thread date. Unfortunately I cannot get an appt. with the neurologist (I'm going to UVA because Dr. Burns is there) until late October. So I've got a couple of months to think about it I think I will try to keep track of my symptoms though- which at this point are definitely my eyes. They are having trouble staying in focus, and want to shoot outward. I'm anxious to be tested to rule out a tumor, and also to find out if there is any affect on my lungs. Since I had a 'tune up' a year ago, I have managed to increase my forced lung capacity to 105% (up from 60%) through exercise, but my FEV1 has remained constant.
When you have symptoms in your arms and legs- can you describe what it feels like? My biggest questions are not knowing exactly what is the MG and what is CF and what is just normal body functions. For example, I have noticed that when I exercise regularly, instead of feeling more energetic I often feel completely drained and exhausted. When I try a yoga move, like standing needle pose, the leg I am standing and balancing on feels very shaky and will hurt even though it didn't used to feel that way. But I have no idea if it's the MG or what.
Anyway, I'm glad I have someone to talk to because it feels as though there's hardly anyone else out there who is dealing with both of these issues. Thanks.

 

[Beth F.]

Hi BamaGirl22, I have one more question for you. Have you ever taken Tobi, and if so, did you ever become ototoxic to it?