ALS or not, so frustrated

[newtown]

Just over 4 years ago I started feeling very tired. Shortly after I started having twitches all over my body. Very soon after I developed severe sleep apnea, never have snored to this day. I was in the hospital for 2 weeks for a full heart, lung and blood workups. Healthy as can be from their eye. I had an emg and nerve conduction studies. on my left leg dr thought they were normal other than some distal latency in one leg. Mind you the emg was NOT done on the leg with the twitches. This test was performed by a MDA affiliated dr who insisted my shortness of breath was due to asthma. I continued to become short of breath from talking and regular daily activities.
I am/was a professional opera singer and I know my breath and the breath mechanism. I have been through 5 sleep studies that show my oxygen low at night and each time my machine pressure on bipap is raised. I then went to an ALS clinnic, the dr said I have no signs at this time. After visiting this dr for about 3 years he has flown the coop and now I have to start over. I have seen him for 3 years, no emg nor nerve conduction test just physical observations. I do not feel weak, just tired. However I am ALWAYS short of breath and it is getting to the point where I really cant breathe at night. My last FVC and associated tests were fairly normal. I feel like the last month I have really gone down. My right leg has an enlarged thigh muscle. Other than that I look normal. I have no energy, I notice my speech goes out the window sometimes and it slurs and I say absolutely odd and strange things. If I had more energy and my breath was stronger I would be happy. I am worn out and I have much difficulty lying flat in bed even with the bipap. I go to the dr and they tell me how great I look when I feel horrible. I have had mri of brain, been tested for Lyme, one dr thought I had that. Tested for asthma, heavy metals, MG, the list goes on and on. The last few days no matter how much I try I feel like i am not getting a good refreshing breath, this is stressing me out. MRI of brain was clear 4 years ago. I am scheduled for MRI of thoracic and spine next week. I almost wish i looked like crap so someone would take me seriously. Any suggestions? My wick is burning down quickly and I am afraid I am loosing my ability to perform my job. I teach middle school and need the insurance and the money.
Thanks
Sean

 

[CindyM]

Hi Sean- your post rang a bell wilth me. I've had sleep disorders for years and know what the lack of energy can do to you. Currently I am also going through the process of having the pressure raised. It is part of the mystery, why this happens.

Don't get discouraged when they say you look fine. MND attacks from the inside so people look great for a long time. With only fasics and tiredness I'd say you are good to go but the speech thing is something to watch. Good thing they are starting to run tests. Hope they can explain what is going on and hope it is treatable. Cindy

 

[newtown]

thanks Cindy

Until recently I am the only one who noticed the speech thing. Now in class, I teach 300 middle school music students, they look at me and say " huh? what did you say?" I notice myself being very specific and determined in my speech, making sure I enunciate every little syllable and word. I am thankful for every morning that I see the sun rise in my bedroom window. I made it through last night and I was afraid and doubtful when I went to bed. I am tired, worn out and frustrated but I have those kids I know will be there to greet me when I arrive at school. I am trying to be positive and keep on going and thanks for the encouragement. The dr told me last that if I had any als related thing that I would be in much worse shape after 4 years of this. I feel I am in much worse shape, they just can not see it.
Sean:mrgreen:

 

[ltr]

I go to the dr and they tell me how great I look when I feel horrible.


Sean - so many of us suffer from the phrase above. The docs really should stop worrying about how we look.

Have you looked into myopathy, particularly inclusion body myositis or polymyositis. I am not a doc and don't want to scare you any, but there are treatments available and you deserve every option. Don't give up. You have to advocate for yourself. Find the right docs no matter how hard it is and get the tests you need. Look at the bottom of this webpage for myopathies and see if you fit the picture.

http://www.mdausa.org/disease/

 

[Blizna]

Thats interesting, Im experiencing almost the same as you did - at first I feel tired, then tremor and twitching and last week Im waking up very soon-sleep apnea? Or how it does look like?
I saw 3 neurologists and they all say its due to my mind - Im very anxious. Normal reflexes and all, so no EMG needed :/
Right now Im in panic attack

 

[ltr]

Panic and anxiety will only make the symptoms you are suffering much worse. You have real problems, but they will be exacerbated unless you try to relieve your anxiety. Have you asked the doc for anything? I took Xanax when this first started until I could learn to cope (or try to) with what is happening. You will feel better if you try something and it will help with your sleep too. Good luck.

 

[Blizna]

I know, but I was anxious before I had these symptoms so all docs think its from my mind again - and I have to say Im able to create symptoms very well If I read about them
The twitching is much better now for last few days - I guess real ALS doesnt look back and its stable or worse?

 

[Jamiet]

You need to check into the neuromuscular disorder that causes muslce tone to "increase", i.e. your thigh muscle.

there is a specific one, i just can't remember which one.

what about a biopsy.

i would say, 4 years and no physical appearance changes is pretty good sign, but, yet, something is going on.

I would find a good doctor that is willing to get the "ringer" done on you, specalized lyme testing, adequate EMG and even a muscle biopsy, MRI, CT's etc etc.

good luck, none of this is easy.

Jamie

 

[Midnight]

Hi Newtown,

I think I can understand the frustration that you are going through. It is hard to explain to even your closest friends that you cannot get your words out because it sounds so odd. It is sooooo hard to explain. I will know what I am trying to say and mid conversation it will be, for example, more often an "L" word it seems and it just seems like it doesn't come out right or it is almost rolled or missed or stammered or something and it surprising to me, so I have previously just mulled over the word in the conversation or just kind of replaced it with another word, like I meant to replace it. At times people will joke with me, but usually nobody will notice, so it is hard to put it on the "symptom" list because you know what you are trying to say...you are clearly an intelligent person, a school teacher, and it can be so subtle yet so frustrating, yet it is not all the time.

As far as looking good, I think that life is full of so many responsibilities and some of us just have to keep going, so to a degree you just have to be as functional as possible and look as normal as you can until you close the doors. It seems like the people here understand this.

I think that the previous posts are wise. Maybe print them out and write a list and take some of their advice. Don't give up...get the help you need.