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Re: Yes, swallowing problems now. Seeking support

PostPosted: November 26th, 2014, 3:29 pm
by Xina535
Ok thanks!

Found out today that I DO have a mild fever (38 celcius) I'm freaking out about Ebola. Greaaat!!

Get stool test results in a couple days then that will determine if I come out of isolation. They took blood several times, all normal, even white blood count. ??

Re: Yes, swallowing problems now. Seeking support

PostPosted: November 27th, 2014, 12:35 am
by Yuliasir
shoul dit be ebola at the stage of vomiting and diarrhoea, it would be rather alot of blood in it, also hardly you can write this message due to quick worsening of general condition (liver/kidney failure). With the relatively slight fever, most probably it is salmonella infection (I hope). Had it once 25 years ago and still rememebr it as a worse ever experience in my life. Minus 8 kilo in few days :)

Re: Yes, swallowing problems now. Seeking support

PostPosted: November 30th, 2014, 11:06 am
by Xina535
Hi all, I am out of the hospital since Friday. I didnt have any diarreah or other symptoms, my temperature and blood pressure were back to normal, but they told me they could not technically discharge me because the stool test results werent back yet. On Thursday, the head doctor said if I was feeling ok on Friday and partial results of the stool test were there (if they called the lab), then I could go home. Well, they called and the lab hadn't even started my testing yet, so I checked myself out of the hospital. I did not see the reason to stay there all weekend just for a stool test result. I will find out more tomorrow when I call there.

Now, where I would like to reach out for support, is that I am getting tired way more quickly now. All over fatigue. I went out to get a haircut with my husband, and just to/from the car and walking around a little, wiped me out. One thing in particular is that my left leg feels strange when walking, where when I push off of things like stairs or a curb, I have to strain more on my left leg than my right. Still happening today and it's scarying me. Now, this is my BAD leg, where I've received 3 cortisone shots in my lower back because of the radiating pain from an irritated nerve that went down my leg and at one point in the past, really did make it part lame! I have physiotherapy yet to start (6 sessions), and well, I am in a whirlwind of scary thoughts and questions, and maybe someone can relate. (I am not asking for anyone to answer these questions, these are just my constant thoughts going around in circles).

Did I have an infection? Do I still have one? If so, is it something that can be treated? Note - the only medicine I got in the hospital were IV fluid, pain and anti-throw up meds.
So I have something wrong with my digestive or biliary systems? In the hospital, my urine was very dark and I have pale stool now. Is this Hepatitis!?!? Or cancer? Could that explain all of the other symptoms?
Whatever infection I have/had, could this possibly "induce" *** if I have it - where my strength will now go downhill? Is this overall fatigue something serious or something that is caused by my recent issue and stay in the hospital?
Could I have something like an auto-immune thing - positive ANA, irritated nerves, connective tissue issues in my hand (Ganglion cyst and possible tendon repair needed - causing weak grip), digestive issues (throat problems, excessive saliva, strong hiccups, sudden vomiting and diarreah, pale stool, bouts of diarreah on a normal day to day basis before the recent attack)?
I have this weird crawling feeling in the SAME spot on my forehead. Every day, comes and goes. Could this be part of "it"? Whatever "it" is?
Is it a good thing that my twitching is down to maybe a normal person twitching, or is this a calm before a storm?

I remember in the last two weeks, I struggled with my eyes, trying to keep them open and focused at work, and that is still happening. Have to rub my eyes a lot, they seem to be always tired. Maybe that was part of the virus' grip on me? Maybe part of an auto-immune? Maybe part of the fatigue that sets in on the onset of MND? In MND, when a body part is affected, isn't it only ONE part at a time?

I have a feeling something is just totally wrong. Too many weird things happening simutaneously and I don't even know where things went wrong!
I have a colonoscopy and endoscopy on 8-Dec, I am hoping for some answers there. Thanks for "listening" to my fears and frustration.

Re: Yes, swallowing problems now. Seeking support

PostPosted: November 30th, 2014, 1:49 pm
by LKP1231
I think you need to give it a little more time to recover your strength. Get some rest.

Re: Yes, swallowing problems now. Seeking support

PostPosted: December 4th, 2014, 8:24 am
by Xina535
Thanks LKP - I am not as easily fatigued, but I still have the problem with my left leg and right hand. My right hand becoming weaker. I can't grab my hair in the shower right to squeeze out the soap and water. My hand/grip just slips down. :cry: I am HOPING this is all because of the cyst...the removal was re-scheduled to 13-Jan. :roll:

Also, they could not find the bacteria or virus that they thought caused this spell, so they diagnosed me with unspecified gastroenteritis and dehydration. My CRP levels were up to 8,23 and 8,69 when normal range is 0-0,4. On my last day in the hospital, they were 3,44. I just assume they are back to normal now. All other blood tests were ok.

I have some pains still and the colonoscopy and endoscopy on Monday.

Re: Yes, swallowing problems now. Seeking support

PostPosted: December 29th, 2014, 9:55 am
by Xina535
Hi everyone - I realize I never posted the outcome in this thread, and I am seeing a ears, nose and throat doctor tomorrow, so I am worried and have questions.

Outcome from the scope tests:
Mild Gastritis and Reflux. He said it's mild enough to call it normal, like how everyone has. The Report said, "The findings do not exlpain the symptoms" and he ordered two breath tests to see if I have some sort of intolerances (scheduled in Feb).

This is of course un-nerving considering everyone on here thought I had bad cases of something gastro related, but I don't. Instead, I have a WORSE case of the excess saliva and "lump in throat" Problem, and now biting of the tongue. I called a ears, throat and nose doctor today to see if they can see me and I got an appointment right away for tomorrow morning. I am going to go over all of the below with the doctor (excerpt from my Journal about the symptoms affecting my mouth and throat) and hope she will give me a swallow test or somehow explain what is going on.

Questions: Anyone have any advice before I see the doctor? Will they be able to tell if I my symptoms are due to weakness or something bad?

I am very very nervous!

Excerpt -I started a Journal as I read it was a good way to handle anxiety,. Get it all out, battle negative thoughts with positive ones and have an ation plan for each. I have found it helpful.


1) Since Oct 2014: Excess saliva/constantly wiping the corners of my mouth and swallowing

Negative thoughts: Read it is a sign of UMN damange and a symptom of bulbar ALS onset if the excess is due to not being able to swallow properly, and/or the process of clearing saliva in the mouth has been damaged, and/or the face muscles are weak and can't seal the lips properly. I did twich in my face for a while (hot spots) during this time. Could my process of clearing saliva have been damanged and I wouldn't know about it?

Positive thoughts: Read is a sign of herpes and anxiety, both of which I have, if the problem is due to extra production. I do not have swallowing issues with other liquids or food. Liquids do not come out of my mouth. I am not choking on anything. Can be a sign of reflux, which I was diagnosed with (minor case). Since it started, there were several days or weeks where it was very minimal, so the amount has waxed and waned. I can move my mouth like normal (smile, frown, fish lips, move my tongue all over in different ways).

Action plan – go to neurologist and get an EMG of my tongue and facial mucles and to an ears, throat and nose doctor to determine if I am over producing or if my swallowing process is damaged. Get Atropine eye drops to put it under my tongue to help control saliva in the meantime. It may help me get my mind off of it.

2) Since mid-Dec 2014: Biting/nipping at tongue

Negative thoughts: Read is an onset sign of bulbar ALS, due to muscles and tongue weakening

Positive thoughts: I have not noticed or seen any twitches in my tongue. This has also waxed and waned since it started. It was at it's peak when a herpe broke out on my lip. Read it is also related to anxiety. I do not have any slurring, which is usually the first sign of tongue weakness.

Other thoughts: My tongue is constantly pressed against my teeth or the roof of my mouth. I read this is common for anxious people. When I try to relax it, it always goes back. I read this is a sign of Bruxism (can also be due to neurological disorders), but I do not know if I have clenching of teeth at night. I do not have headaches, jaw pain or clicking. I do have a weird feeling that I am not pronouncing certain words right, but this is also a sign of anxiety. As long as others do not notice slurring, it is supposedly not an isssue. I wonder if this weird feeling I have about pronouncing has to do with my tongue being pressed and tense all the time. Maybe also why I am biting it?

Action plan – go to neurologist and get an EMG of my tongue and facial muscles. Ask ears, throat and nose doctor about this.

3) Since mid 2014: Lump in throat and sometimes food or pills getting stuck

Negative thoughts: Read that food getting stuck can be a sign of ALS. When I had an endoscopy, the doctor did not see anything and said that the findings did not explain my symptoms. If not ALS, then what could this be (a real lump, tumor)?

Positive thoughts: Read that „lump in throat“ feeling is not really known about in ALS patients. It is a tell tale sign of anxiety (globus). It can be very strong at times and other times I do not notice it, but it is always there in a way. The same with food getting stuck, does not always happen.

Other thought: Recently, I tried doing the cat/cow yoga pose to stretch. When I tilted my neck back (cow), my throat hurt and I could only cough. Every time I do this, I have to cough, this did not happen before. I felt my throat with my hand and felt that my neck on the outside felt really tight. Not sure what to think – is there some damage to my throat or is this a sign that my throat is just really tense?

Action plan – go to ears, throat and nose doctor to determine if there are throat issues, go to neurologist and get an EMG of throat and neck

Re: Yes, swallowing problems now. Seeking support

PostPosted: December 29th, 2014, 9:56 am
by Xina535
by the way, I have Herpes 1, the kind on my face (not genital Kind). I broke out recently with one sore on my lip, and before that, the last break out was years and years ago.