Diagnosis: Autonomic Nerve Disorder

[qualitybabe823]

Second Swallow Study today

Well, my neuro did not trust the results of the swallow study he ordered here at the local hospital so today I am going to Froedert to have a second study done. I will update on the results when I return. It's wierd, but at night when I start to feel really fatigued, it's hard for me to speak clearly, I have to make a concious effort, my tongue just does not want to cooperate. I hope it's good news today.

 

[ltr]

So do we Babe.....will be thinking of you today. Good luck.

 

[CindyM]

Hello htere. Are you back from your appointment? I am hoping you have some good news to share...Cindy

 

[qualitybabe823]

Results of the second swallow study

Well, it is fairly good news, depending how you look at it. This time they were very thorough, they explained everything to me and video taped it and let me watch it when it was over and talked me through it all as I watched, it was awesome and the speech therapist that set it all up should get some kind of reward for her kindness and compassion. My epiglottis (I think that's how you spell it) is not working properly, it is supposed to flap down over the trachea when I swallow, the nerves in it sense food and it automatically closes over it. In my case, solids will push it down over the opening, but when I drink liquids, it has a 2-3 second delay, hence the liquid goes on past it before it closes the opening, this is why I tend to aspirate small amounts. She said it's not a big deal, she saw no weakness in the back of my throat, althought, my tongue does show some weakness, it's very mild. They then tested my esophogus, that's where I get the lump in my throat feeling from. The muscles in my esophogus are not all working. THere are deadend spots where the food lands and sits, when I take another bite, it pushes the food past that point and then it will hit another spot just like it. THis type of muscle issue can not only be a neurologic problem but acid reflex can cause this type of damage, I have had acid reflux for about 4 years, so I am chalking it up to that. They may want to do another test on these particular muscles, but this time lying down, this way gravity does not play into it, only those muscles. I am optimistic, so is my husband, he actually hugged the therapist today, boy was she surprized! I also discussed the fact that I have an appointment at the MAYO clinic, she thought that was a very good idea given my history and family background. So like I said, depending how you look at it, IT"S GOOD NEWS! We will look at it this way for now, or at least until they prove differently.

 

[CindyM]

I am so glad you got a good report! Plus, with your attitude, you should be able to cope with whatever may happen in the future. THanks for the good news. We can always use a little of that around here! Cindy

 

[qualitybabe823]

CindyM

Yeah, I am finding that it is easier to be optimistic than sad all the time, I physically feel better. Right now Positive thoughts are needed, no matter what illness anyone has, mental attitude has allot to do with it. So we'll keep smiling and hoping.

 

[qualitybabe823]

EMG results

Well, after the swallow study of last week, this week I had a Nerve Conduction test done on my throat, not fun. It showed my Neuro that I do have weakness in my tongue on both sides, a delayed swallow reflex. He is concerned about these findings and the fact that my esophogus has dead areas where the muscles are not working. But he still insists that I have a rare inherited Autonomic Nerve Disorder. I asked him with all the swallow results and the Nerve Conduction Test on my tongue along with the fasciculations in my entire body if this could all be due to Autonomic Nerves, he said yes, mine are hyperactive. The lower half of my body the nerves are damaged, I no longer sweat there, thus why I have muscle rigidity and cramping in both legs and foot drop in both feet. I don't know, I want to believe him, but something keeps telling me that there is something else going on. My right arm muscles are cramping ALL THE TIME, my thumbs will lock up onto my palms at times and I feel like they are weak, but he tells me they are not. Then how come I have problems holding on to paper at times, I drop things periodically. I told him, ok, then what do we do about this? He asked me to give him a day or two to consult with another Neurologist (Dr. Barkhaus, he is the head of the ALS clinic there) along with the Speech therapist and see if they can come up with some medication that will assist the nerve damage in my lower half of my body and the swallowing issues. My husband and I will go along with this for a while to see if there is any improvement or stop of the progression, he said that it should help. But if it doesn't, then we will move on to Mayo Clinic to get a second opinion. We will remain hopeful at this point, it's easier and less stressful than the alternative. We figure this, in time, we will know......Just thought an update was needed on my condition. The worst part is now I feel like I've swallowed a tennis ball, the muscles in my throat and tongue are spasming. I know one thing for sure, I'm really sick of being someone's science experiment.

 

[crystalkk]

babe,
I read before on someones post that hot tea helps with the throat spasms.
I swear these tests make symtoms worst.
How did they do the emg or nerve conduction in those areas?

crystalkk

 

[qualitybabe823]

Crystalkk

He did it externally with a rather long needle, first he went under my chin to stimulate my tongue, asked me to push my tongue left and right and then hold it to the left in my mouth. It became very intense as the test went along, then he placed the needle just to right side of the front of my throat, almost where the addam's apple would be in a man, this was very painful as the test went on. My throat started to spasm along with my tongue. It's still doing it today, I feel like I have a hard golf ball stuck in there, I found that warm liquids helps to relax it but its only temporary. In the swallow study, they foung that my esophogus has areas that are not working, food will stop in 3-4 spots the full lenght of it and the only way it got it to move was to drink something to push it down. I asked if he was going to test this further, he said the test is very painful and uncomfortable and he felt there was already enough evidence from the swallow study that he did not want to put me through it. I am awaiting a phone call from his office today, he is consulting with another DR to see if there is some sort of medication they can start me on. He had a real concerned look on his face when he completed this test. His statement was this, " I think for now, we will say this is all due to the autonomic Nerve Disorder and continue to monitor." It did not sound real confident to me. The scary part is that my father passed away 11 years ago after being diagnosed with Bulbar onset ALS. It took him over 2 years to get diagnosed, when he was finally diagnosed, they told him he had 2 years or less left. He passed away 14 months later. I am scared, he had all the same symptoms that I am having, and yet my Dr does not beleive it's ALS. He also does not beleive my father had it, but that I definitely inherited this disorder from him. I"m trying to be positve, but it's really hard, deep inside, I am scared to death of what my future holds, I try not to let it out, especially around my family. So, we will try whatever he recommends and see if things improve or continue to get worse, if worse, then we will get another opinion.