Kylee91003

I started with twitching in my thighs almost 4 years ago, only after exercise, never thought much of it until I got slurred speech - then got scared.. None of it's easy, but I just decided, I have no idea what the future holds, I can't get this time back with my kids.. so We are gonna have a darn good time, and be thankful for every second... and hopefully I have a lot of quality seconds left, and someday can look back at this and think, man that was hard, but it got easier!

My first symptoms were eyelids changing - weakness everywhere- fast heart rate and major GI issues too.. then it became generalized- starting with a floppy knee, then awkward hips.. I remember one day I was so distressed by it all, I went to cry, and couldn't even make the crying face! my face just didn't move! I had a few months where I could barely swallow.. but now it's better again - when the IVIG wears off I start having more swallowing and speech and droopy eyelids etc.. heat makes it dramatically worse! I also twitch all over..

Your symptoms sound SOOO similar to mine!! Mine all started post partum - 19 months ago, I had a virus at 5 weeks post partum with horrible muscle aches and high fever, and then a week later had an IUD placed - it perforated and I was hospitalized with blood tranfusions etc.. been interesting since!! I have two kids - almost 3 and 19 months- work full time stressful job.. sooo.. I just am thankful for every single day on this earth... I have days where it's easier than others.. where I break down, and others I think hey i'm 18 or so months into this and still walking, talking and even working and being a mom- life is amazing! we could die in a car accident any day, so you just don't know how long you have on this earth.. however having something majorly inhibiting with your "Normal" life isn't easy..I think the unknown is very difficult for me mentally, as I fear the worst case scenerio- How am I supposed to know what kind of house to buy, how to plan etc!?

[part1]
No, I didn't mean that because you're progressing that it is ALS. I meant that people with bulbar weakness and who have ALS, the name of it is progressive bulbar palsy, to differentiate from those who have a bulbar palsy not caused by a motor neuron disease.

If you had ALS it would not progress as quickly as your problems have presented, and it would be different issues than the one's you're seeing.

I'd put ALS out of your mind; you have enough to worry about without adding something that you don't at all fit the picture for.

When you go to the neuro, ask about MG (myasthenia gravis) although, I doubt you'll have to ask, as one of the first symptoms of MG are drooping eyes. When something unusual is going on, getting an accurate diagnosis can take a while. Be prepared for that. You most likely will not walk out of the neurologist's office with definite answers of what you have, although you may have answers as to what you don't have.... to be continued

[part 2]

You could even be having a post viral response or post infection neurological response to an earlier infection. It can take a while to pin down the cause, but, there is no reason to think you won't get better.

I know how heavily your responsibilities as a mom weigh on your heart, just take it one day at a time, and try to focus on something other than what's wrong with you. (easier said than done)

Make sure you let me know what the neuro says, I'll be thinking about you, and write me anytime.

Kylee, I'm so glad that 67698 saw your post. I thought much sounded similar.

As to your worries about ALS. no, really.

You actually do have a bulbar palsy,because you have weakness in muscles that are controlled by nerves in the bulbar part of the brain stem.

Palsy means weakness, its not a disease but a description of problem.

When people talk about bulbar palsy with ALS its called "PROGRESSIVE bulbar palsy". A different connotation.

Like I asked before, has anyone tested you for myasthenia gravis?

My symptoms are droopy eyelids swallowing troubles floppy knee feeling face shaking when smileling internal shakes in arms one foot feel strange sometime like it dosen't belong face has pain a lot. Sound similar at all. All started after treatment for uti.

some weeks I'm pretty darn good, others just so so.. they still dont' have a great answer- Myasthenia and LEMS have been on and off and on the table a lot. What are your symptoms? what testing have they done ? I don't know if they will ever give me a diagnosis or be able to tell me what the prognosis is.. but the fact that I am doing so much better than I was a year ago is great.. I have been back to work and have my dexterity back since the 2nd IVIG (I coudln't hold a pen or silverware for months before that).. I do have droopy eyelids and double vision too! Message me if you have anymore questions!

Hi, I was trying to find a way to message you, but couldn't figure it out!!! I am so sorry you are going through ANY symptoms similar to mine! It is scary thats for sure!!! I don't have any "real" answers.. I have been diagnosed with CIDP.. though most of my testing for that has been negative (LP, EMG/NCV x 3 etc).. but I had epidermal nerve skin bipsies that came back very abnormal that showed non length dependent neuropathy.. so they gave me the CIDP diagnosis.. I landed in the hospital about a year ago.. difficulty breathing, and well every muscle was just weak!!! I do have muscle wasting in both hands (the tops of them in between my thumb and index finger).. They started me on IVIG in the hospital- first round, mabye mild improvement (thought it was placebo effect, so didn't get my hopes up)2nd round was AMAZING- back to normal!! Since then I get it every 2 weeks -

Kylee, I know you're worried. NO it doesn't sound like ALS, but you do have a process going on. Have you been to an ENT? Try this type of doctor first. If you're wanting to "research things" while waiting for an appointment, look up conditions that affect the Orbicularis oculi. This muscle is the one that closes the eye, keeps from drooping, etc. Have you been tested for Myasthenia Gravis?

One you've posted more, you will be able to send and receive private messages, and we can talk more,

I have to go, have someone coming out to the house, and arriving any minute.

Don't worry, there will be answers, and you will be able to deal with the answers you get, no matter what they are. And again, NO it doesn't sound like ALS.

PS, I have my privacy settings so that only my contacts/friends can access my profile page and post visitor messages, I sent you a friend request so that you can communicate with me via visitor message until you're able to send private ones.

I'm sorry that you are struggling with whatever you got going on. I read your thread and all your posts. It really doesn't sound like you should be concerned with ALS. I also don't think that our symptoms seem to be that similar. My advice is to keep looking for answers, but try and do this in a calm way...... Im doing ok. I still have no answers. Thank you for asking. Hang in there.