31 yrs old, could this be bulbar onset? Please respond..

[brendapals]

Hey CB,

I have very, very dry eyes all the time. To the point that I use artificial tears 4 or 5 times a day. They are red and bloodshot 24 hrs a day.

I have Sjogren's syndrome, an autoimmune disorder, that leaves the patient with dry eyes, dry mouth. I think the lab test that my rheumy finally did to confirm it was SSA/SSB markers and my SSA was positive.

Lots of things could cause dry eyes, if it is bothersome to you, get it checked out by your doc.

Keep the faith,
brenda

 

[wright]

Hey CB

Let me start by saying that in my opinion, your symptoms and their progression are not typical of ALS.

It sounds viral or possibly post-viral immune in nature. The quick onset of symptoms after your illness certainly points in those directions. Your sudden, global weakness also points away from ALS and more toward the former two. I certainly wouldn't be worrying about ALS at the moment.

I noticed you asked me if your neuro was doing all of the right things. I'm not going to know more than your neuro when it comes to your care. Please trust him/her. I do think that if you have some concerns about your upcoming EMG not testing all of the areas of your body that you are concerned about, you should voice those concerns to your neuro. Tell him/her that you have ALS concerns and that for your peace of mind, you want it to be more thorough. I'm not saying that because I think you have ALS but rather, because you will worry about it if you don't.

Take care and I apologize for not responding to your thread earlier.

P.S. Are you going to Ohio State for care?

 

[CB1977]

Thanks Wright!

Wright-

Wright- Thank you so much for responding! I have not gone to OSU yet, but that is my next step. Is that a good nero school or would it be better to go to cleveland clinic should I need a second opinion. I want to give you a rundown I my current symptoms, some have changed and some have appeared since my first post.

-Muscle twitching is still all over body, even in tounge and throat. It is not as severe as the first 2 days but is still their....more at night.

-My tounge is scalloped? (I thought this was normal thats why I never metioned it before) It has ridges on the sides. I also feel it twitch once in a while , just like the rest of my body.

-My neck pain! By the end of the day the muscles in my neck, especially the sides and front hurt. They even hurt when I press them. Its like my head is to heavy for my body? This is one of the worst symptoms because the pain even hurts when I talk. I had a full MRI on the soft tissue in my neck and it came back normal? I also feel like sometimes my chest is tight and it is hard to take a real deep breath but this comes and goes. the cough is getting better

-I still have a lump in my esophogus feeling that comes and goes but is there less than it was 2 weeks ago

-energy level is imroved, went from 50% to maybe 75% in the last week but when I am more active the neck gets worse so I cant work out or anything.

- I read somewhere that one theory is that ALS could be some type of nerotoxin triggered when the body is put under extreme stress in some people (like weight lifting). This scared the **** out of me because before this stuff started I lifted 3-4 times and week.


When I write down all of these symptoms, I am starting to get really worried because they seem to me to be matching up with ALS Bulbar onset. If it is, would the emg show something wrong and should I tell him to do my neck, throat, and tounge?

Thanks Wright and everybody for your input.

CB in Ohio

 

[CB1977]

Oh yea- I forgot one symptom- I wake up with very dry eyes at night. Thanks.

 

[awieleba]

hi cb,

I think that I have mentioned this before about the tongue. You will have to ask your neuro because I thought I had a scalloped tongue (and still do), it has indents on it and my hubby even thought it was wierd looking. WHen I showed it to my neuro, she said no that is not it. I think that mine are from my teeth. THe marks correspond to my teeth and appear more prominent at times than others. SO, it may be your teeth, I do feel my tongue pressing on to my teeth alot.

I read about that study with extreme stress and it freaked me out. All this started when I was pregnant. Your body is stressed from that and then on top of it I was pushing myself extra hard for tennis. I made it to the districts in michigan and had to train and compete while pregnant and in 90 degree heat! My body was being pushed to its extreme because I was pregnant. So I was worried about the seemingly active people that come down with this. Myabe wright has researched this far more than us, but I agree, it is a little bothersome to think about. BUT, there are so many people that work out & train and are fine. Who knows? will we ever know? I also heard due to the italian soccers player they suspected sprays on the field. Well, that worried me alittle, I live right on a golf course on the par 5 in my back yard, so they use a ton of sprays and chemicals! But no one else in my sub has als! OR my cousin who works on a course as do my uncle and grandfather did. (big golf family). I just dont know if we will know......

 

[rose]

CB, (sorry to come so late to the discussion)

I'd strongly urge you to go to a rheumatologist, a top notch one, and also go to an ophthalmologist. Depending on where you're going (as far as the eye doctor) either just a general ophthalmologist or one that specializes in dry eye. There is a test for dry eye called the schirmer test, and it will give you and your doctors a perspective of exactly how dry your eyes are.

I've had dry eye for years. When I got sick with the MND, at first my doctors thought it was Sjögren's, because at that point I also had dry mouth. However, this post is not about me. My point is that eyes get drier as we get older, but you're not old enough to explain this. A doctor could prescribe Restasis for you, that treats dry eye due to an inflammatory cause (such as Sjögren's) and even allergies. If its not helpful, it would be part of the diagnostic process for you. Even though in and of itself dry eye isn't a crisis, it could be a factor in what direction to look for the cause of your other problems.

The test I was referring to, the schirmer, I remember being so surprised when the results showed severe dry eye for me, because I'd convinced myself that my eyes weren't really that dry. Unfortunately for me, the Restasis was about useless, and I. like Brenda, rely on the moisture drops. I can still wear contacts, but they last about half as long as they're supposed to before needing replaced. I also have narrow angle glaucoma, and have no idea if this matters with the eye symptoms at all, but thought I should throw it in!

My eyes do wake me sometimes because of the dryness. At my last neuro visit down at Hopkins, my doctor felt that my eyes do not close tightly enough, that there is some weakness there, but this in itself would not explain my problems as the dry eye predates my illness for a number of years.

Good luck to you

 

[CB1977]

Rose- Thank you for responding and the advice. When were you diagnosed? Do you have Bulbar ALS? What were your first symptoms? Have you heard of neck pain being a part of the early symptoms?


Thanks- CB

 

[rose]

Rose- Thank you for responding and the advice. When were you diagnosed? Do you have Bulbar ALS? What were your first symptoms? Have you heard of neck pain being a part of the early symptoms?


Thanks- CB

CB, if you search down the forum a little you'll see a thread by Lydia about ibuprofen... I put down my entire history on that thread, so you can read it there rather than me typing it all back in again.

I do not know if I am bulbar onset. My neurologist seems to think that I am, as the first concrete test results were the dirty EMG of the bulbar area, but when I saw her last (the beginning of July) she said she feels that I have predominantly upper motor neuron signs, (which is a good thing). For disability purposes she has put down Bulbar onset of ALS (or MND ~ one or the other) but she was reserving an official diagnosis until I met the critera set by El Escorial. ( I needed another part of my body to show problems with the EMG). Since my last visit I've had weakening of my legs, and fasciculations. I'd had none in my arms or legs when I'd had my one and only limb EMG last April. If you go look at the emg thread at top of this forum page I actually posted my YouTube video of my leg and of my thumb)

It seems to me that my bulbar area has kind of plateaued. ~ not completely, I've got "wet voice" which I didn't have earlier, but I feel that most of the activity is happening in the limbs for me now.

So, I'm not convinced that I'm bulbar onset. just because I had such severe leg cramps that predated everything else, but none of the doctors cared about them. It was like, oh, they usually don't mean anything, get more potassium in your diet. So, because they didn't really care, I didn't care either. It wasn't until I made it down to my neurologist at Hopkins (who most definitely cared about the cramps!) that any interest was paid to them, and by then I'd forgotten the details of precisely when and how they started. I also was on Plaquenil for about a year for Sjögren's, and that is a quinine, so my cramps got better for an extended period of time.

As far as the neck, I did get cramps in my neck and shoulders a lot. I know there is a cranial nerve, I think its the accessory nerve (?) that could be involved with that. I hesitate even to write this as I don't want to instill more fear into you. I think though that it might be an upper motor sign (?) and your reflexes would show something one way or the other.

I truly don't know what causes my dry eye and mouth. I do know that there are nerves that go through the area that produces tears and saliva though. Most people with ALS have a problem with excess saliva, from what I've read, I believe it is an upper motor neuron cause, as its a relfex. (?) What ever the reason, I have no excess saliva!

From what you wrote, the description does sound like it could very well be an autoimmune cause. Regardless, you're going to need to explore that first.

I hope you find some answers soon, and that this has helped a little. take care,