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I have posted here before and am still waiting for an appt with a neuro. I fear I've waited too long with misdiagnoses.

Since my last post my left arm is progressively weaker, still twitch, the left shoulder where it happens most is grossly atrophied at this point, and I just got home from the ER after it was almost a pop in my throat, now I have an large indent and swallowing is difficult. Ontop of that my breathing is faster and it's almost like the indent sucks in a little and I get short of breath again.

ER sent me home saying anxiety even after saying I look like there could be something wrong given the change in my muscles, but it wasn't considered ER specific and to see the Neuro.

I'm terrified, because within the last 3 months which started with twitching, and wrong diagnoses I am now showing rapid decline.

I feel like on the off chance this is what I think it is, it's moving so fast I am running out of time to get the things I may need to survive.

Thank you,
 
In the event this is ALS, is this considered a breathing issue, or more a swallowing issue. Dr said my lungs sounded great, but I can tell the difference in air I get. When I felt the pop my chest got hot, I couldn't breath and fingers began to curl, I'm sure at least that part was the anxiety waiting for the ambulance.
 
When I read all of your previous posts, I see a lot of things that can't possibly have anything to do with ALS, and I do see a solid case for anxiety. Then there is your atrophy: that's a solid clinical finding that something is not right.

Follow up with the docs. But don't get too fixated on ALS.
 
Thank you for the response. The shoulder is worse, but it's really all over. This throat issue is really scaring me though because I don't feel like I'm getting the same air intake, my vision is blurry and it took 3 swallows to get the small piece of bologna down that I tried to eat when I got home.

It would have been nice to at least monitor me to make sure I was in fact getting all the airflow I'm supposed to, I'm now on the couch just feeling like I can't breath and scared to death at this point.
 
I just got home from my first visit to a neuro, I chose to go to the office I went to 3 years ago after I was hit in the head and received a concussion.

She basically did a very mild exam of my reflexes and checked my arms and legs for weakness. She did see the atrophy in my shoulders but didn't look at my legs at all.

At the time of the visit I was not having any twitching, which has slowed down a bit from the constant I had for about a month, but I do still have it and they seem to be stronger than the mild twitches I had in my shoulder that is very bony now.

I have an EMG scheduled for Dec 17th, she did verify that this is definitely neurological, and I also had blood drawn to check MG . Never in a million years would I ever thought I would be hoping for one Neurological disorder over another, but I am hoping for the MG though given the atrophy I've encountered, and the fact that I can no longer swallow like I could I'm hopeful, but think it's the latter end of the 2.

She said that she doesn't think it's als, but I'm sure when I started crying she was trying to keep me calm.

My breathing has gotten worse, and it seems like within the last 3 months I've had every aspect of als. Weakness, twitching, atrophy and now swallowing issues on such a quick timeframe.

Another thing that keeps me hopeful is that from what I've read it doesn't all hit you at the same time, I can still use all my limbs weak or not, but again I know it hits people differently.

In everyone's experience, as it progressed was it this quick, did you have everything affected in this way in such a quick manner ?

With that questions being asked, I've noticed and thought back and had minor symptoms for yrs, is there a possibility it was slow moving and now it's just progressing ?

I've come to the conclusion that though it was a bad idea to look into this so much, it has helped me in one way and it's all of you wonderful people that helped with this. Regardless of the diagnosed I'm far from ready to give up and give in, I want to survive regardless, I have kids I love dearly and a man that means the world to me so I'm ready to fight and live paralyzed, on a vent , in any way possible.

I'm setting up an appointment with a pulminary specialist so I am one step ahead given my breathing issues, as of now this cold I have is making it more difficult, but I have been checked for Pneumonia a few times due to the congestion feeling I have.

I forgot to ask, thought the twitching has slowed down, I still have it on the shoulder that has atrophy but very rare, it's now in larger bursts in my legs, stomach, well just about everywhere. Once it slows down in one area, does that mean that the muscle is gone and at that point wouldn't the limb stop working ? Or can it slow down due to lack of muscle, but still twitch rarely ?
Thank you for reading..
 
"She said that she doesn't think it's als, but I'm sure when I started crying she was trying to keep me calm."

You won't believe anybody, will you, MusicLuver?
Still not seeing a strong case for ALS there.
You're still breathing, eating, walking, talking and using your arms, yes?
And just so you know, ER docs are trained, equipped and experienced at one thing: stabilizing people so they can be seen by others. They are not diagnosticians. I hope you have a GP doctor who is leading your health investigations.
 
Thank you for the reply.

I no longer see my GP, she was the Dr who diagnosed it as Lyme Disease with only one positive band and had me popping antibiotics like Tic Tacs.

I saw my Neuro on Monday and she can at least confirm It's a neurological disorder, Myasthenia Gravis and ALS are the only 2 she mentions though she said she didn't think it manifested the way I told her, But I also mention that I have had possible symptoms as of almost 3 yrs ago since I was blindsided across the head and spent 6 weeks unable to watch TV, drive , and that was when the muscle pain and spasticity started, I have perminient burns on my backand shoulders due to the muscle tenseness I've had for so long and is testing me for. I went straight to Labcorp right after the appt to get the bloodwork drawn, again the EMG is scheduled for 12/17.

The swallowing is getting much more difficult and I always feel like I have a huge bulge on my throat. To top it off I ended up with a really bad respitory infection and wasn't able to get the nasties past mid throat no matter what I did so I had to swallow it right back.

I was just discharged from the Best ER I know after a 2 days stay because my swallowing was so bad I had only managed to get a few bites of soup down and a small fruit cup from past Thursday to this afternoon when I was ordered a plate with soft foods, they actually have full staff at all times in all area of practice. they did a swallow study and the video shows where the swallowing begins to be an issue and the gag reflex kicks in. They also performed a few mild breathing tests because my Respitory is a little low and they have recorded those on my Neuros order's who they maintained contact with the last few days I was in the ER. Unfortunately the twitching that was constant has slowed down so while it still happens all day, you'd possibly have to watch me sitting there for some time to catch a glimpse of it, when before if I moved my shirt my shoulder was just constant and very visible to the naked eye

In a addition they had 2 neuro's see me while I was there, my reflexes and my legs are very spastic, they did note the atrophy in shoulders, legs, chest, legs and feet, my loose skin, and saw the crawling on my tongue but again this is all happening on both sides at the same time it seems, and they did say it was strange that I still have quite a bit of strength in my arm, hands and legs even though they are quite bony.

Since the EMG isn't scheduled until the 17th I wanted to make sure I stay somewhat ahead of the game because my breathing is more shallow and I'd rather be working on next steps while being either given the prognosis or not.

I really appreciate the feedback I get here, you are all very helpful and it's nice to have someplace to go while I watch such drastic changes happen with my body. On a good note, I know have 3 of the top neuro's on my side that have examined me and are there when and if needed.

And to clarify the statement the neuro made, this particular neuro never looked at my legs and the feet where the bones are beginiing to protrude, nor did she look at my tongue that looks like I have a case of pop rocks constantly just wiggling under my tongue, which I thought was pretty standard during a neurological exam. Her exact words were, please don't cry my patients will think I'm a horrible Dr and then followed with I don't think you have it, yet no other tests have been ordered to eliminate any other possibilities other than MG and EMG to check for ALS. Just interesting that 2 additional Dr's in my admission room at the same time, noted all the additional info I provided and thinks the EMG is super important.

Thank you again for responding, I appreciate the time a care you take responding to everyone, and I hope you had a great Thanksgiving,
 
Sorry one more thing, after the swallow study they have at least been able to confirm the Dysphagia.
 
Not sure if this will show up, but this is the breathing tester I was sent home with and they tested me on for days along with on that looked like a big tire pressure gauge.

20151210_002246.jpg
 
Sorry this is the link of the picture I took.

file:///C:/Users/Kimberly/Downloads/20151210_002246%20(1).jpg
 
I know you're really anxious to get a solid diagnosis, and you're afraid it might be a fatal disease. But even after looking through your posts carefully again and again, it just doesn't seem quite like ALS.

You swallowing problems seem centered around your gag reflex where there is a lump in your throat. Maybe I didn't say that right, but I think I know the feeling you mean. But people with ALS have described the onset of swallowing problems is due to paralyzed tongue, and you haven't mentioned paralyzed tongue.

Your atrophy is certainly important. But most folks with ALS, including my late wife, have described atrophy as occurring AFTER the limb has lain paralyzed and unmoving for some weeks or months. You don't have paralysis.

I won't second guess the neuros who physically saw you, but I'm still not leaning toward ALS here. Be sure to let us know the results of your next visit.
 
The speech people we have seen have said you don't feel the fasciculations of the tongue in als. You can see them but not feel them.
 
Let me start by saying I very much appreciate all the feedback and help from this forum.

I did have my EMG today, good news is though she has noted the muscle loss what muscle I do have is healthy, and the EMG was normal. Bad news is it's back to square one to try and figure out why I've been so sick.

I do have a quick question, she only tested the right side of my body, is that pretty standard ? Would it make a difference to have tested both, or one side would be enough to verify all is well ?

I think at this point I may have to search for an LLMD, I think I mentioned that I had been tested for Lyme, but only one band came back so most Dr's won't treat for Lyme and co infections let alone test for co infections with just one band, but something certainly is making me sick.

I don't know which is worse, knowing or not knowing.

Thank you again for being here for me, and I hope you have a good holiday and new year to come.
 
Yes, that's pretty standard. She knows what she's doing. If she said no ALS, there it is.

Not knowing is worse. But at least you know it's not ALS. Good luck.
 
Thank you so much, can always rely on a quick response from you :) She did mention the Fibro, I just can't imagine Fibro making someone so miserable and sick but I guess it gives me a second place to start along with the Lyme Dr. I hope you have a great holiday and New Year. You guys really do wonders on here.
 
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