Do I have ALS? Is this ALS?

[sparkles]

Hi! I'm not sure how to use this forum. I posted most of what I will type here on another thread on this site. I think my 7 yr old grandson is smarter on a computer then I am! My name is Shelley and I'm 56 yrs old. I have always cut my food up into tiny pieces and ate very slow. But I ate whatever I wanted until about 4 months ago, when I noticed that I was eating even slower and smaller bites and I was having trouble with certain food textures. I stopped eating mashed potatoes and anything else creamy. Then one day out of the blue I was getting ready to take a sip of a soda and I thought to myself "What if I can't drink liquids" and at that very moment i lost my ability to be able to swallow that drink. It felt like I forgot how. Like I couldn't get the food to go past my teeth and down into my throat? This happened 13 weeks ago, I know the exact date, because I thought it was so weird that I wrote it down on my calendar. I wasn't able to swallow even water, but I could eat rice and pastas? With time, I've lost my ability to be able to swallow anything, food or liquids, during the day. If my husband wakes me up in the middle of the night out of a deep enough sleep, I am perfectly capable of drinking anything for a few minutes, until my brain wakes up along with my body, and then it feels like a trap door has shut on my throat. THe only way i can explain it is to say that it feelsl like I have forgotten how to swallow so will not even try to for a fear of choking. When I am up in the middle of the night, I down ensure and gatoraide. This is the only calories I get. My poor husband wakes me up 3 or 4 times a night, just so i can get a can of ensure in me each time he awakens me. The only other symptoms i have are excess saliva (I use a cup to spit in) and it is worse when i try to eat something (that always gets spit into the cup too), and I have a thick phlegm that I can't seem to bring up, but I am able to swallow it. I have had a barium swallow, a modified barium swallow, and an endoscopy done. All came back clean. I had an ENT doctor put a tube down my nose and he said he saw no abnormalities. Tomorrow I get a CT scan of my neck and this thursday I have another special test the ENT doctor ordered. I have been in the ER twice for dehydration. My speech is fine. My reflexes are fine. I think my doctor thinks what I have is brought on by stress. I have been under a lot of stress the past few years. He said if I lose much weight I'd have to get a feeding tube. I am thin as it is at 107 lbs, 5'5" tall. The only thing that can be helping me hold my weight are the ensures i drink in the middle of the night. My doctor gave me xanax which I take, but it does nothing to help with my swallowing. He also put me on paxil which I have not started taking yet. I have seen hypnotists and acupuncturists...nothing is helping me and I feel like I'm starving all the time. Another thing, when I do chew food up and then spit it out, I get a terrible salty like taste on my tongue. I've seen my dentist too and all is well here too. I'm in a terrible depression and about ready to go over the edge just trying to figure out what to do about this. Have any of you ever heard of someone with ALS being able to drink in the middle of the night but then not being able to drink or eat anything during waking hours in the day? I'm praying for a cure for this horrible disease. My heart goes out to you all.

 

[Al]

This doesn't sound like ALS at all to me.

AL.

 

[sparkles]

Thanks Al! I need to hear something positive. The only reason I started checking into it was because someone told me that not being able to swallow is one of the first symptoms of bulbar ALS. And then one of the doctors I have been seeing mentioned that if they can't find anything wrong on all the tests I have had done, that it may be ALS or Parkinsons?

 

[Alyoop]

It sounds very much like anxiety. If you are better in a sleepy state, then that says it all. Organiccaly everything is fine, so you probably have what could almost be called a conversion disorder. Its sounds like it has built up over time, from just an anxiety thing, to the complete inability for you to overcome it, at a much deeper level.
You need psychiatric help, not ba counsellor, but a Doctor. Its hard to treat, but you need urgent help. Its great that you took yourself off to the Doctor and it sounds like he has been thorough and understanding. All the normal tests are good news when it comes to you NOT having ALS, so thats tremendous.
I wish you well on your journey and I hope you can get the right help to overcome your swallowing issues.
Aly

 

[sparkles]

Thank you Aly! You have made my day! My husband is going to try to get me into a psychiatrist asap. Just thinking I could have ALS got me to checking it out and my heart goes out for you and for all of the other people with it. I'm praying for a cure for it and for all of you who have it too.

 

[zac111]

i had syntoms of swallowing 5 years ago and it was anxiety it will do alot to a person.its been 4 years for me without a syntom and all of a sudden twithing muscles are back mostly in both calves with soarness even though i was diagnosis with bfs a long time ago its really bothersome but the best thing you can do is focus on trying not to worry and see the doc.

 

[sparkles]

Hi Zac, did your swallowing symptoms go away from the anxiety? If so, how were you able to get thru it? We're you able to swallow anything? Like I said, I can swallow liquids in the middle of the night if awakened from a deep sleep, but nothing at all during the day, food or liquids. Which is why my general practitioner thinks my problem is psychological. I'm sorry to hear that you're having trouble with your muscles in your calves now. I"m sorry to sound ignorant too, but what does bfs stand for? I came onto this site to learn more about ALS because one of the many doctors I have seen mentioned it and parkinsons disease. During my modified barium swallow, the radiologist said I "rolled" the barium around in my mouth like a person with parkinsons would do, but she did not think I had parkinsons. The gastro doc I saw mentioned ALS, amongst other diseases and told me to see a neurologist. I went to one and he spent all of five minutes with me, checking my reflexes in a way that I think my 7 yr grandson could do, before telling me in a round about way that if I can swallow in the middle of the night, i should be able to swallow during the day. His way of saying this was "you either are pregnant or you're not". Odd comparison seeing that i'm a 56 yr old woman. Thank you for responding to my post. Believe me, I have been seeing doctors and will be seeing a psychologist asap. I can't afford to lose any more weight. I'm praying for you. Sparkles

 

[trfogey]

The typical first symptom of bulbar ALS is slurred speech. And, when the swallowing issues caused bym bulbar ALS start, they typically involve muscle weakness in the throat that cause problems swallowing thin liquids, not solid foods.

And once the slurred speech or swallowing problems begin, they don't go away and they get steadily worse. So, between that part of your story and your clean swallowing tests at the ENT, it's pretty safe to say that ALS probably isn't the source of your problems. Don't know what it is, but I'm sure that the many doctors that you're seeing will come up with an answer for you.

Good luck.

 

[sparkles]

Thank you TRfogey. Any info I get can only help me try to understand what I am going thru and what someone with ALS goes thru. I appreciate your response. God bless you...I'm praying for you. Sparkles

 

[zac111]

Benign fasciculation syndrome its a benign condition that mimics syntoms of really bad stuff like als but does no damage.its good that thre neruo thought you were ok but you can get a second neruos thoughts i did and yes when the anxiety went away so did the swallowing problem.hope everything gets better for you soon.

 

[sparkles]

Thanks again Zac.....my gastroenterologist told me to go for the second opinion of a neurologist....i'm def going to take him up on that one now for sure! I feel for you with your problems, but thank God that you don't have ALS. Prayers going out for you tonight!

 

[Okie2]

Why would you need a second opinion that you don't have ALS? Focus on anxiety problems first, get yourself under control. Then it might all fall into place with no problem. Good luck, and thank God you probably don't have ALS.

 

[sparkles]

Okie2, you're right....I have been going from one doctor to another so much in the past 3 months that I pretty much just do whatever anyone says to do these days. I have seen hypnotists and acupuncturists, along with other specialists. I need to get myself together here and start eating and thank God that all tests have been good so far! Sometimes we just need to hear this from someone else. Thank you to all of you who responded to my post. I'm keeping you all in my prayers. Sparkles

 

[sparkles]

Hey Zac, do you mind my asking how you got rid of your anxiety and were able to swallow normal again? I've seen hypnotists and acupuncturists and am taking xanax every day, but i've still got a long way to go. It seems the more I chew the food, the more saliva I create and then it gets to where it's too much and I spit it out. Any helpful ideas you can give me for this?

 

[zac111]

i was acually told to try slow mag its a magnesium supplement after 2 months anxiety went away its said that it helps the nervous system i think it really helped me.