Old 09-21-2018, 02:56 PM #1
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Unhappy scared and need to vent.

I have all the symptoms, increasingly bulbar to be specific.

I have been in and out of the hospital the past couple of weeks, I have the follow-up appointment with Neuro on Wednesday. The first time he saw me he took ten minutes and then told me it was probably stress. I know why its because I don't fit the demographic.

The swallowing issues are the worst, I am going to try and stay out of the ER this weekend and just try and give my partner 2 more normal days.

When the twitches and the cramping started happening it was just in my legs, then it progressed. I was scared but it was easy to dismiss. I stayed away from Google because I knew I would make it worse for myself and thought the best thing to do was just to wait and see, what the doctor said. He said RLS I said sure and started taking Iron tablets. I was having very little sleep and lost my appetite so everything else I felt tight throat ect. I put down to being tired and anxious.

The twitches have progressed to all over my body I was still scared but refused to google anything and just thought let's see what the doctors say, I had had trouble with the feeling of a lump in my throat on and off and pressure on my chest, I told the doctors at the ER, I told my GP I told everyone no one referred me to a GI no one did anything. No one checked my tongue,

The past week things have got worse, I started getting horrible fasciculations in my tongue, and then face trembling when I smiled. That's when I decided to google. Now I'm having a hard time swallowing extra saliva ect., and the picture seems pretty clear to me.

I am only 28 and newly engaged. I'm a female. So I realize how unlikely it is that all this would happen to me. I don't even really know why I'm typing all this, I'm jealous of this peoples posts for having the tiniest of symptoms and have been told for years there is nothing wrong. I'm not a hypochondriac, I always been a little sickly for years so any weird symptoms I get I usually just never pursue, now I feel so stupid.

I'm dreading the words, when I tell the Neuro everything that's been going on, my family and fiance will be devasted. I live in Canada and all my family is in England so I just hope I get the diagnosis quickly so I can go and be with my loved ones.

I've been searching for an alternative reason for all these problems but I can't search anymore, I just have to enjoy what I have now because I may not have it tomorrow.

I see how you support all the people on this forum with their health anxiety and so on. It's amazing, I couldn't possibly imagine dealing with all this and your own problems.

If by some miracle it is not ALS and I will come back and update you. If not I will see you in a different area of this website I'm sure.
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Old 09-21-2018, 03:01 PM #2
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Default Re: scared and need to vent.

Nothing you've said sounds like ALS to me. But it sounds like you will need an EMG to believe that, so that's what I'd tell the neuro on Wed.

Best,
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Old 09-21-2018, 03:15 PM #3
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Default Re: scared and need to vent.

It looks like you've already diagnosed yourself with ALS, which is unfortunate. However, as I was reading your post, I was reading and reading and waiting to see your symptoms of bulbar onset. I saw none. I know you are scared, but diagnosing yourself with an illness that strikes 1-2 in 100, 000 when no professional has seen it in you is an exercise in futility.

So you can feel better, I second what Laurie said, and advise you to go get your EMG. Then you'll find out your worries were most likely for naught.
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Old 09-21-2018, 08:38 PM #4
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Default Re: scared and need to vent.

I know what a toll health anxiety can be so I empathize with you.

I don't see a lot of evidence to suspect ALS but I do agree you should get an EMG just to reassure yourself.

Please let us know how it comes out.

Just another thought.....are you iron deficient? You shouldn't supplement with iron unless you need it. Maybe you do. Also get B-12 and Vitamin D checked because deficiencies can cause all kinds of symptoms.

Best wishes.
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Old 09-22-2018, 05:52 PM #5
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Default Re: scared and need to vent.

Thank you, everyone, for your responses. I rreally appreciate the support.

I have been taking iron supplements and b12 for a while.

I have stopped the past couple of days because swallowing has become so bad, it feels like my throat is lazy. Any recommendations of how to deal with this until I see the neuro? The fasciculations and cramps in my body are really driving me insane. I also get a lot of episodes of goosebumps, like waves of shivers.

I really hope there is some sort of different outcome, I will definitely come back and let you all know. I'm hoping my neuro will get my tests done quickly so I can figure everything out and get back to England, for treatment.

My breathing feels very tight at the moment like someone is sat on my chest, sort of like when you have a chest infection and there's phlegm sitting there, its easier to take shallower breaths, especially after eating or drinking, i've only actually choked (coughing fit once), the rest of the time it just feels like my throat is lazy and I have to hold my breath for a while after taking a bite or swallow. I really hope I don't get pneumonia in the meantime. I really, really, hate going to the ER.

I'm just so annoyed I brushed off so many of my symptoms previously as anxiety and now I'm having all these serious issues. I wasn't even really anxious about anything, I just assumed I was a sensitive person. I've had previous strange neuro symptoms over the past 8 years and been diagnosed with PGAD and MDDS, but It has never prevented me from leaving the house or working.

thank you again, I understand it takes a lot of effort for you all to read and respond to these messages. Is there any particular ALS charity that I can donate to?
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Old 09-22-2018, 08:03 PM #6
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Default Re: scared and need to vent.

Have you been checked for GERD, H. pylori, allergies? Many here who think they are bulbar end up finding those.
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Old 09-23-2018, 11:17 AM #7
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Default Re: scared and need to vent.

no, I haven't, I just thought with the combination of other symptoms that it pointed away from that. Thank you for the suggestion though, I will definitely bring up these with my doctor.
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Old 09-24-2018, 11:10 AM #8
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Default Re: scared and need to vent.

CPARK, hi. Couple things.


First, forget ALS. Ain't happening.
Second, see a counselor AND a general practice medical doctor. They can help reduce that anxiety.
Third, ask a doc to test your blood BEFORE taking supplements. Lots of ppl think supplements are good because they're natural, but that is not at all true. Careful.



After reading all you wrote, I think you're subconsciously worried about the marriage. Remember, the mind is what controls your body, and the subconscious mind is really very powerful.
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Old 09-24-2018, 03:20 PM #9
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Default Re: scared and need to vent.

Thanks Mike, I appreciate your insight into things.

Maybe it's all subconscious, I mean I hope it is, It just seems so extreme. I've been feeling off for a while before all of this compounded.

The face spasms and mouth/swallowing problems really have got me wound up.

I was tested before I started taking the iron, my ferritin was relatively low but anemic that's why the doctor said to start supplementing, I've now stopped all supplements because I felt like the pills got stuck in my throat twice. I thought maybe low b12 as it was under 200 at the beginning of the summer, but I got my top up injections and thing just continued to get worse. The only thing that has shown up as being consistently low is WBC and Neutrophils but my doctor said that was normal.

I just feel so confused, at the beginning of the summer I was fine camping/hiking ect. Now I have to rest after cleaning the countertops.
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Old 09-24-2018, 03:31 PM #10
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Default Re: scared and need to vent.

Iron is available as a liquid. So is B12. So regardless of your other issues, if the doc thinks you need to continue supplementation, that is a switch you can make.

Hang in -- Wed. is not far.
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Old 09-24-2018, 04:03 PM #11
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Default Re: scared and need to vent.

Thank you, so much for suggestions and support.

I really appreciate it, I can't really be honest with the people I love as I don't want to hurt them.
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Old 09-25-2018, 08:13 AM #12
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Default Re: scared and need to vent.

Today I have woken up with what can only be described s a feeling of a lump of phlegm in my throat that will not come up, it's so distressing, feels like if I breathe too deep in it will get sucked into my windpipe. Also, I put my finger down my throat a bit to see whether there was something physically stuck there, I assumed it would make me want to puke, but it did not, I've never had a particularly strong gag reflex, but this is ridiculous

I really hope the Neuro takes me seriously tomorrow.
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Old 09-25-2018, 12:34 PM #13
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Default Re: scared and need to vent.

Another thing that you can add to the list. ALS will increase your gag reflex, not decrease it.

Please write down all your concerns so you won't forget them. Listen to what your neurologist tells you. Ask questions. If something doesn't make sense, ask again.
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Old 09-25-2018, 03:10 PM #14
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Default Re: scared and need to vent.

Thank you Kim, thats made me feel a bit better.

I just had the most amazing surprise, my dad has flown in to look after me, he is n his way from the airport now.

I'm worried because I have to tell him the extent of how ill I am, but I'm so happy to see him again. I was soo worried I wouldn't see him again.

So happy and sad at the same time.
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Old 09-25-2018, 04:26 PM #15
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Default Re: scared and need to vent.

Truly hon you are not even remotely describing the onset of ALS - please ask your dad to read this thread so he can get perspective. I wouldn't want to think he becomes all alarmed and runs down the rabbit hole after you. Maybe he can help you calm down and sort this with a doctor and open mind.

I wish you all the best.
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