Worried & need advice/support

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Re: Worried & need advice/support

Postby wjjw on February 20th, 2014, 6:06 pm

readytocheckout wrote:Bill. Do you mean some ales? I think I'll pass on that, the ales would play merry hell with my tachy.

Yes, exactly. Sorry, there are better ways to relax, but they take a lot of time and practice. I thought you were looking for a quick way to test your theory. :)

Cheers,
Bill
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Re: Worried & need advice/support

Postby readytocheckout on February 21st, 2014, 8:02 pm

Went to the neuro today, the reflexes he checked were ok, basic strength tests ok. But now that I've got this swallowing problem he's not so sure anymore and has told me to go to a speech pathologist to get speech and swallowing muscles assessed.

I'm in really dark place in my life now, not sure if I'll post too much here anymore. I can't cope.
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Re: Worried & need advice/support

Postby wjjw on February 21st, 2014, 9:42 pm

readytocheckout wrote:Went to the neuro today, the reflexes he checked were ok, basic strength tests ok. But now that I've got this swallowing problem he's not so sure anymore and has told me to go to a speech pathologist to get speech and swallowing muscles assessed.

I'm in really dark place in my life now, not sure if I'll post too much here anymore. I can't cope.

Hey, don't check out on us. Almost everyone on this site been in the "dark place" ... sounds like the neurologist is just doing that because you complained about it, not because they found anything wrong.

Cheers,
Bill
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Re: Worried & need advice/support

Postby siusmlls on February 21st, 2014, 9:57 pm

I agree with Bill! Keep your head up and keep us posted.

I've been hanging around and following your progress because I have very similar symptoms. Every doctor I have seen is chalking it up to anxiety.

-Richard
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Re: Worried & need advice/support

Postby readytocheckout on February 22nd, 2014, 5:44 am

siusmlls wrote:I agree with Bill! Keep your head up and keep us posted.

-Richard



But if I do have bulbar MND would anyone here really want to know? I mean I don't want to incite panic to anyone in these forums if I do have bulbar, people here will read back through my posts and probably conclude that their symptoms or presentation was the same as mine then decide based on that that they must also have bulbar.

I am in enough panic myself and I don't want to cause panic or increase anyone's anxiety any more than it may already be. I just don't want to be a problem for anyone, I'm already enough of a problem for my poor wife who also isn't coping after what the neuro told both of us.
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Re: Worried & need advice/support

Postby RGB on February 22nd, 2014, 6:24 pm

readytocheckout wrote:Went to the neuro today, the reflexes he checked were ok, basic strength tests ok. But now that I've got this swallowing problem he's not so sure anymore and has told me to go to a speech pathologist to get speech and swallowing muscles assessed.


Yes, because you are reporting symptoms in an area that a specialist is going to be better placed to take a look at.

readytocheckout wrote:I'm in really dark place in my life now, not sure if I'll post too much here anymore. I can't cope.


This kind of logic says that every woman who is screened for breast cancer might as well start writing a will!

I don't know exactly what he told you (and I know from personal experience it is difficult to take it all in accurately when anxious) but my guess is that what he said and what you heard may have been slightly different. Unless anything specific was mentioned then all that has happened is that he is passing you on to someone with more specific expertise for your specific symptoms, that has little to do with the chances of this actually being anything terrible.

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Re: Worried & need advice/support

Postby readytocheckout on February 25th, 2014, 11:19 pm

Swallowing is still the same, no improvement at all. I can't get a speech pathologist appointment for two months, this is torture.

You know what, this feels like a soft palate issue. It's like the palate rises when I swallow food but it doesn't rise when I dry swallow. It's this even possible? The problem is there all the time on every single dry swallow. Could tmj cause a symptom like this?

I also read a couple of posts here where people were asking about their soft palate closing when they breath out fast through their nose. I've also got that happening.

I'm so desperate for some relief but it doesn't come, I feel very unwell and scared.
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Re: Worried & need advice/support

Postby readytocheckout on March 9th, 2014, 5:57 am

Well I got to see a speech pathologist, seems not good news. I was told that when I say ahhhh the soft palate doesn't rise enough, just a tiny little bit, maybe that explains the swallowing problem. Looking at the soft palate it seems very low at the back of my mouth and I can see that it barely rises when I say ahhhh.

I guess I need an emg. Would an emg rule in or out mnd at this stage given I've had this swallowing problem since Dec 2013? I've already had an emg in Aug which included the tongue and that one was ok but the swallow problem didn't start until Dec. I just don't know what to do apart from panic. When I swallow water i don't choke and none comes out of my nose so I guess that's still working ok for now. I've told my doctor I can't cope anymore so I don't know what happens next. I know I've got what seem to be other bfs symptoms for just over 1 year now but this one isn't bfs. I know bulbar is rare for an already rare disease, talk about unlucky if that's what I've got.

My neuro checked my reflexes two weeks ago and they were ok, apparently I do have some brisk reflexes but it didn't worry him, well not that he told me anyway. I don't feel too good posting posts like this one either because I know that this is a bfs forum. I guess it's back to the neuro again, and again, and again.
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Re: Worried & need advice/support

Postby ShawnW on March 9th, 2014, 9:52 am

readytocheckout wrote:Well I got to see a speech pathologist, seems not good news. I was told that when I say ahhhh the soft palate doesn't rise enough, just a tiny little bit, maybe that explains the swallowing problem. Looking at the soft palate it seems very low at the back of my mouth and I can see that it barely rises when I say ahhhh.

I guess I need an emg. Would an emg rule in or out mnd at this stage given I've had this swallowing problem since Dec 2013? I've already had an emg in Aug which included the tongue and that one was ok but the swallow problem didn't start until Dec. I just don't know what to do apart from panic. When I swallow water i don't choke and none comes out of my nose so I guess that's still working ok for now. I've told my doctor I can't cope anymore so I don't know what happens next. I know I've got what seem to be other bfs symptoms for just over 1 year now but this one isn't bfs. I know bulbar is rare for an already rare disease, talk about unlucky if that's what I've got.

My neuro checked my reflexes two weeks ago and they were ok, apparently I do have some brisk reflexes but it didn't worry him, well not that he told me anyway. I don't feel too good posting posts like this one either because I know that this is a bfs forum. I guess it's back to the neuro again, and again, and again.


We are now talking around 3 months. I would expect there to be quickly advancing symptoms if it were bulbar. When we begin examining our bodies, we find things. When we get things out, practitioners sometimes find things. These things may have been with us for all our lives or many years. But, hypervigilance caused us to look. After 3 months, you are still able to swallow food and water effectively. IMO, that is a very good sign. Bulbar doesn't hide...you don't need to go looking for it. You know it. BTW: anxiety can cause feelings of swallowing difficulties.
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Re: Worried & need advice/support

Postby ShawnW on March 9th, 2014, 9:52 am

readytocheckout wrote:Well I got to see a speech pathologist, seems not good news. I was told that when I say ahhhh the soft palate doesn't rise enough, just a tiny little bit, maybe that explains the swallowing problem. Looking at the soft palate it seems very low at the back of my mouth and I can see that it barely rises when I say ahhhh.

I guess I need an emg. Would an emg rule in or out mnd at this stage given I've had this swallowing problem since Dec 2013? I've already had an emg in Aug which included the tongue and that one was ok but the swallow problem didn't start until Dec. I just don't know what to do apart from panic. When I swallow water i don't choke and none comes out of my nose so I guess that's still working ok for now. I've told my doctor I can't cope anymore so I don't know what happens next. I know I've got what seem to be other bfs symptoms for just over 1 year now but this one isn't bfs. I know bulbar is rare for an already rare disease, talk about unlucky if that's what I've got.

My neuro checked my reflexes two weeks ago and they were ok, apparently I do have some brisk reflexes but it didn't worry him, well not that he told me anyway. I don't feel too good posting posts like this one either because I know that this is a bfs forum. I guess it's back to the neuro again, and again, and again.


We are now talking around 3 months. I would expect there to be quickly advancing symptoms if it were bulbar. When we begin examining our bodies, we find things. When we get things out, practitioners sometimes find things. These things may have been with us for all our lives or many years. But, hypervigilance caused us to look. After 3 months, you are still able to swallow food and water effectively. IMO, that is a very good sign. Bulbar doesn't hide...you don't need to go looking for it. You know it. BTW: anxiety can cause feelings of swallowing difficulties.
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Re: Worried & need advice/support

Postby Debd4l on March 9th, 2014, 11:03 am

What did your speech pathologist say about another EMG? Did they refer you back to the neuro? It is good you saw a speech pathologist I am assuming all else was normal with your speech? If you are having a swallowing issue you should really be referred to an ENT. They can actually test your swallowing function and not just your speech. Good luck, my ENT appt is in about 15 days..if you had a normal EMG in August and they checked the bulbar area as well as arms and it was normal that wasn't that long ago. My EMG was last May and they only did my leg. Anyway, try not to worry too much I know that is easier said than done for all of us here!!


readytocheckout wrote:Well I got to see a speech pathologist, seems not good news. I was told that when I say ahhhh the soft palate doesn't rise enough, just a tiny little bit, maybe that explains the swallowing problem. Looking at the soft palate it seems very low at the back of my mouth and I can see that it barely rises when I say ahhhh.

I guess I need an emg. Would an emg rule in or out mnd at this stage given I've had this swallowing problem since Dec 2013? I've already had an emg in Aug which included the tongue and that one was ok but the swallow problem didn't start until Dec. I just don't know what to do apart from panic. When I swallow water i don't choke and none comes out of my nose so I guess that's still working ok for now. I've told my doctor I can't cope anymore so I don't know what happens next. I know I've got what seem to be other bfs symptoms for just over 1 year now but this one isn't bfs. I know bulbar is rare for an already rare disease, talk about unlucky if that's what I've got.

My neuro checked my reflexes two weeks ago and they were ok, apparently I do have some brisk reflexes but it didn't worry him, well not that he told me anyway. I don't feel too good posting posts like this one either because I know that this is a bfs forum. I guess it's back to the neuro again, and again, and again.
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Re: Worried & need advice/support

Postby readytocheckout on March 11th, 2014, 6:40 am

ShawnW wrote:We are now talking around 3 months. I would expect there to be quickly advancing symptoms if it were bulbar.


Thanks ShawnW. In the past three months I have noticed much more of what feels like tingling down the whole left side of my tongue, tongue also feels and looks swollen (wider than it used to be) and I can now touch my nose with it which I never used to be able to do, and the twitching in general especially on my face has increased a lot. I can tell that my swallowing is getting more difficult and I notice the soft palate often touching my tongue when I talk. I can't dry swallow once without it being very tight in my neck, seems to be in the area under my right jaw. Just feels like one muscle fighting with another if that makes sense, just very tight. And yes I fully agree with you that anxiety can make swallowing worse, but this isn't the lump in the throat feeling. I'm really pinning my hopes on anxiety and some TMJ but I feel that's not much hope to be honest given how hard the swallowing is.

Another thing I've noticed is like a waterfall sensation (hope that makes sense) somewhere at the back of my throat, awful feeling. But there doesn't seem to be extra saliva, if anything my mouth and throat are extremely dry and I'm having heaps of trouble trying to swallow what saliva I've got because of the tightness in my neck when I swallow.

I would have thought (hoped) that after 1 year this bfs wouldn't be getting worse. I feel really drained and weak, probably from the stress and anxiety and the increasing weight loss is another concern, feels like bfs is ravaging my body.

Debd4l wrote:What did your speech pathologist say about another EMG? Did they refer you back to the neuro?


Hi Debd4. Speech pathologist didn't know apart from the comment about my palate. Tomorrow I'm seeing an ENT and I'm half expecting him to refer me back to my neuro.

I wouldn't wish all this suffering on my worst enemy (if I had one), not even bfs.
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Re: Worried & need advice/support

Postby ShawnW on March 21st, 2014, 6:51 am

I would be shocked if this were ***. Very little of that sounds even in the realm of possibility. It doesn't rule out other less ominous things. I can tell you this much, when I focused on my speech and swallowing...I also noticed problems...significant problem with both. I couldn't articulate certain sounds consistently, choking on water, food from time to time...all sorts of sensory things with the tongue. I dealt with the anxiety and it went away. *** stuff with the throat doesn't go away...and it doesn't take it's good ole time. It's progressive, brutal and quick.
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Re: Worried & need advice/support

Postby readytocheckout on April 23rd, 2014, 3:46 am

hi folks

I've been trying to stay away from the internet about bfs and concentrate on anxiety. I went for a Neuro checkup about 3 weeks ago and I told him about the swallowing problem. I guess you could say that it was a good sign that he wasn't interested, to my surprise he pretty much said bye because of the clean emg I had last August.

He checked reflexes in my feet, looked in my mouth, and that was it. Since then my face and mouth symptoms have got much worse. Swallowing is more difficult since this started in Dec. Out of desperation I went to my dentist hoping they might find a tmj problem but they didn't find one and said I need to go back to my Neuro.

I have now noticed a weakness in both thumbs but it's more of a joint type pain when I need to use the thumbs for anything requiring strength which is what's preventing me from using my thumbs how I need to. I have the same problem in my right ankle when walking so now have to be careful that I don't fall. I've also noticed that my right hand is always stiff when I open and close it quickly.

I still have twitching all over, especially now all over my scalp, face, and some sort of buzzing sensation in my tongue. Today when I looked in my throat to try too see why it is somewhat sore I saw the uvula deviated far to the right. I am having pains in my forearms and have noticed that the twitching around my right knee seems to be making my leg feel numb which gives me the feeling that I'm about to fall over.

The Neuro wouldn't do another emg, I feel so bad now and I'm convinced this is much more than bfs. I recently had my yearly bloods checked and the only issue found was a slightly high ferretin. The ana result was normal.

I've also now noticed that I can't move my right thumb as far over to the pinky finger as I could a few months ago.

The swallowing problem has me quite concerned, especially now that I've noticed it seems to be getting harder to swallow meat. My speech is ok except for often biting the sides of my tongue when I talk.

I know that bfs doesn't cause swallowing problems, but does all this really sound like bfs? One more thing, I'm losing more bulk in both thighs and both upper arms and my right forearm has pain when I lift, just now I noticed that it's hard to type because the fingers in my right hand are trying to move the way that want not the way I want.

My face twitching has also caused twitching under my right eye which hasn't stopped for 2 weeks.

Bfs, really? Not coping to well at all.

Thanks for reading.
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Re: Worried & need advice/support

Postby Yuliasir on April 23rd, 2014, 5:10 am

Garry,
if changes you describe are not only your overperception (which could be of course), then you need ANOTHER neuro. Or find a center in which you may do EMG on your own cost (bulbar region, hand region, etc.) and then proceed with the neuro visits.

On the other side, it is a bit strange that your symptomes are not obvious for neuro. If you do not have reflex changes, it is also good... It is anyway 4 month since you started to feel symptomes you can not explain, so IT SHOULD BE something on clinicals if not on EMG, should it be something sinister.

Joint pain perceived as weakness is common for us. Stifness in hand when quickly opening and closing also not uncommon.
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Re: Worried & need advice/support

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