So worried

[Amylife]

Thanks for everyone's response, but I think I have a serious concern. I tried to eat dinner last night and after chewing for just a few minutes my jaw was so weak I could not finish. As I grabbed my dinner plate I almost dropped it as it seemed so heavy to me. I am not a complainer, nor a hypochondriac, I just know when something is seriously wrong. I was awoken out of my sleep from what felt like a spasm in my throat that took my breathe away. I have been waking up with my eyes being really blurry and the tips of my fingers tingling which would seem to indicate a lack of oxygen....I will post after my appt on the 19th, but on a side note my right leg is losing power quickly and I am losing grip strength on my right hand. This seems like bulbar and limb onset I have been dealing with these symptoms since May.

 

[Amylife]

Sorry for posting again but someone has to relate to me, I awoke last night by some sort of spasm in my throat. I have a terrible headache and my right leg doesnt seem to want to work. My right side of my face and jaw is so sore I can barely chew. I'm resorting to all soft foods and my taste is weird if I eat something salty it tastes like I ate a teaspoon if salt, I fear that this is bulbar as I seem to have a heightened sense of smell, I can smell perfumes and colognes that seem so strong. I've lost about 30 pounds, my GI dr mentioned I may need a feeding tube but I dont even have a diagnosis. This seems like I am helpless went to Mayo ER two days ago and they cant help me because it's not life threatening, that was the directive of my dr. Does anyone have suggestions?

 

[codyclan]

Amy,
These symptoms are NOT indicative of ALS, no matter how much you try to convince yourself and us otherwise. You have also had a clean EMG. Clearly you have something going on and you need to work with your docs to try and figure out what it is but this is not the place for you. Please, please refrain from posting symptom updates and do NOT post until after you have seen the doc on the 19th. There is nothing more we can do for you here.
Tracy

 

[KarenNWendyn]

A number of members here have told you your presentation does not suggest ALS. You also saw one neuromuscular specialist who wasn’t concerned about ALS.

You continue to post when you have an appointment in a week. Your most recent posts have a panicky quality to them, and you appear to be wanting some urgent response from us, as if we provided emergency room-type services.

That’s not how we work and that’s not how ALS works. We are also not set up to provide you with a diagnosis.

Let’s assume for a moment that you have ALS (which I’m sure you don’t). There’s not any magical treatment you could take that would reverse or improve your symptoms.

A week is really not a very long time in the ALS world, although sometimes it must seem like forever. We’d love to hear from you after that assessment, but we really can’t be of any more help to you prior to that time. Best of luck.

 

[Bestfriends14]

Amy,

Please read WasaB's last post on the thread below yours. Read, learn it, live it... No need to respond until AFTER your appointment on the 19th.

Have a good week.

 

[Amylife]

I had my appointment today with the ARNP at USF and she completed a clinical exam and felt with 99.9% certainty that I do not have ALS. As far as the whys behind my similar symptoms she did not have answers to. I am very grateful for everyone's time and responses to my questions. Thank you and God bless.

 

[KarenNWendyn]

Thank you for reporting back to us. I hope you accept USF’s conclusions.

I wish you courage and strength as you move past this.

Have a wonderful holiday season.

 

[Bestfriends14]

Amy, I'm so glad for your good news. As none of your symptoms aligned with ALS, I am not surprised at this gift of reconfirmation of your good health.

Having said that, i do hope you believe your very well educated doctors and the knowledgeable folk on this forum who have generously given their time to answer ypur queations. As such, there should be no further need to endlessly search threads to try to find reasons as to why you could possibly have this disease, when for a fact, you do not.

Take care and have a Merry Christmas.

 

[Amylife]

I unfortunately just got back my manometry results from my hospital stay and it stated I had 90% ineffective swallows, 30% weak swallows and 60% failed swallows it ended with a finding of ineffective esophageal motility. I am waiting for dr to call me back, but this is quite alarming to me, has anyone else had these kind of results?

 

[KarenNWendyn]

Amy, you do not have ALS. There are a number of other conditions that can affect esophageal manometry. Please discuss with your gastroenterologist.

I still think you should see a rheumatologist even though your connective tissue cascade lab panel was unremarkable.

But please stop chasing ALS. This forum is no longer an appropriate place for you.

 

[Bestfriends14]

Amy,

Time to let this fascination of getting ALS go. You have been given a Christmas present of a diagnosis which is treatable. Anyone here would have loved to have received a treatable diagnosis, not a diagnosis of ALS. You, however, will not let this obsession go, and continue to take the time of terminally ill individuals in your quest for emotional hand-holding.

Please let it go Amy, seriously, let it go.

 

[Amylife]

I definitely do not have a fascination with ALS just looking for support as today my tongue around the sides are so floppy that I now have started to slur my words which my family has noticed. I am scheduled for an EMG with my local neurologist on the 9th and an appoint with Shands Neurology on the 17th that my gastroenterologist referred me to as his brother in law has ALS and he also suspects a neuromuscular disease since I had seen a rheumatologist and an immunologist to rule out other causes for my dysphagia and drop foot. I will update you after both appointments. Thank you all for being understanding.

 

[lgelb]

As Karen mentioned, there are a number of conditions associated with decreased esophageal motility, from a tumor to infiltrative diseases. Something like myotonic dystrophy might still be on the table.

I still don't think you have ALS, which would almost ipso facto point to something less alarming and/or more treatable, but definitely update us after the appointments, as we all learn from these threads.

Best,
Laurie

 

[Bestfriends14]

Amy, you do not evidence ALS, full stop. I understand that you are looking for support but you are looking on a forum of terminally ill folks who do actually have ALS. As you do not, continuously posting each symptom you have on a regular basis is a bit unfair to those so patiently answering your concerns.

Having said that, it would be helpful for you to update, not after the next symptom, but only after all tests are complete and an official diagnosis has been given. There are other neuromuscular diseases out there that are less sinister than ALS. Having you post back to let the forum know would be helpful and informative.

Thank you and good luck.

 

[Nikki J]

Hi Amy. You clearly have something serious and of course you are frightened.

What people are saying is that some of the information you have provided seems to point to another underlying cause ( normal emg when you have foot drop, the symptom and how, when they appear, and the neuromuscular and neuromuscular np saying not ALS)

I hope your appointments start to give you answers. If this is neurologic it can take time to figure things out which of course is very hard