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Hyppo

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(This is an update from "worried – weak leg and twitches")

For more than two weeks now I have had issues speaking. I first noticed my jaw getting really tired speaking and eating. Now it mostly feels like my soft palate is sagging in the back of the throat. No one can hear anything wrong with me but I find it exhausting to keep up a conversation. I have to keep swallowing and clearing my throat to keep the soft palate phlegm free and speaking less tiresome.
I sometimes also notice myself breathing hard for no apparent reason at all. On those occations I often feel my chest aches on the right side and I get a little dizzy when standing up.
Along with this I get lots of twitches (especially in the legs), weakness and sensations in the right leg, burning back pain, weakness in left forearm and wrist and slight weakness in the right shoulder and upper arm. It all started mid june.

Still, I'm trying to tell myself that this is something other than ALS. Lyme, MG, Thyroid, Neuropathy, Conversion disorder (my doctor is a big fan of the anxiety theory). Whatever. I need something to tell myself when I panic in the middle of the night. I keep repeating that I'm only 32 and that that counts for something. If you don't have time for this, I completely understand. However, I have one question:

Would you say that developing symptoms in both arms, one leg, chest and bulbar symptoms as well as twitches in four months is a usual manifestation of ALS, or is it a little fast?
 

Zaphoon

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You need to see your doctor. If these systems are progressing at such a quick rate, let the doctors check you out. It doesn't sound typical of ALS but I'm no doc!

Zaphoon
 

rose

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You should take comfort that this does not sound at all typical for ALS.

As for your perceived problems in the bulbar area, the tired jaw could point toward MG. The soft palate and the jaw are not empowered by the same cranial nerve, by the way.

The most common manifestation of bulbar onset is problems with speech, not with swallowing.

The dizziness and chest ache is not typical of MND at all.

I don't know how large of a percentage of your average day that you spend researching symptoms, but it would be in your best interest to do something else instead for a while. It will help you a lot.

I hope this is an encouragement to you, take care :)
 

BethU

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Hyppo;57793 I first noticed my jaw getting really tired speaking and eating. I sometimes also notice myself breathing hard for no apparent reason at all. On those occations I often feel my chest aches on the right side and I get a little dizzy when standing up. burning back pain said:
Hi, Hyppo ... I know I'm cherry-picking symptoms here, and that you are probably much too young to have heart problems, but the breathing hard for no reason, dizziness, and burning back pain and issues with your left arm and jaw, could all point to heart problems. I have experienced the sudden breathing hard (i.e., shortness of breath), and it is connected to my heart disease.

Usually when people get dizzy when standing up, it is because their blood pressure drops.

Because of all your other symptoms, this may not be heart-related, but I urge you to get a complete physical. You're very young, but at any age, don't take chances with your heart!

Just for my peace of mind :), please get a check-up.

Good luck
 

Hyppo

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You are so sweet. I am really humbled by the fact that you take time to answer my questions.
Zaphoon: I'm going to see the doctor on monday. Problem is my doctor feels I'm making up symptoms as I go, since there's no way to tell by looking at me (or briefly examining me) that something's wrong.
Rose: Thank you. It is encouraging. It's hard to locate the speech problem. It's not that I can't get the words out, but I sort of have to compensate in some way which makes it very tiresome. Like for instance i was pretty fine last night. But then I had a pizza and the jaws were tired and I had to relax for about 15 minutes before I could articulate comfortably again. You're right by the way – I have been symptom searching too much, but then again haven't we all at some point? I'm worried, you know.
Beth: It's so thoughtful of you to think of my heart. Thank you. I don't thinkt that's it though. The chest pain, like I said is on the right side (which would be the wrong side). Besides, my doc wouldn't hear of it. He agreed to neuro referral quite reluctantly. (The neuro waiting time in Sweden is just awful – I'm due january 29)
 

runner430

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Hyppo-

I have been having some similar problems to you and it is very scary. I feel like the sides of my tongue are rigid and that it is almost sore everytime I talk. Everyone says that I still sound fine, but I find it hard to get out the words sometimes and then once I do I am tired and sore afterwards.
 

Hyppo

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Well, Runner. I hope we're both ok. Like I said, the speech/swallow symptoms are really hard to pin down. Sometimes before I open my mouth I feel that it is going to be impossible to speak, but then I speak and It sounds fine. I'm glad no one can tell, of course. But there's also a problem with credibility.

Besides my symptoms, though, my biggest problem is that my neuro appt is in over 3 months – almost as long as I've had symptoms. (I could perhaps push my GP to test for lyme before that, but other than that there's not awhole lot he can do) Meanwhile I have to try to live my life and it's very hard if I walk around convinced that I have ALS.

So as it is I'm just collecting observations that conflict with ALS. So far I've got this:
– It started with my whole right side at once – leg, arm and back. Not typical?
– Leg, both arms, chest, and speech – all in four months. Very fast onset?
– Burning back pain is maybe not a typical presentation?
– Lactic acid exhausted feeling in leg, keeping me awake at night. Not typical?
– Chest aches. Not typical?
– Tingling chills in thighs. (But I don't get them anymore) Not typical?

The muscle twitches mess things up though. If it weren't for them it would open the field to a host of other conditions.
 

runner430

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Wow! Hyppo it sounds like we have very similar symptoms only mine are still in my complete RIGHT side only. The other side seems fine thus far. It would be interesting to see what the others says about your questions. Maybe Wright or Al? They seem very educated and helpful.
 

runner430

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I also have pain in my right ankle, back of my knee, hamstring, and arm. Feels like there is a bruise but there isn't.
 

Searcher

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(This is an update from "worried – weak leg and twitches")

For more than two weeks now I have had issues speaking. I first noticed my jaw getting really tired speaking and eating. Now it mostly feels like my soft palate is sagging in the back of the throat. No one can hear anything wrong with me but I find it exhausting to keep up a conversation. I have to keep swallowing and clearing my throat to keep the soft palate phlegm free and speaking less tiresome.
I sometimes also notice myself breathing hard for no apparent reason at all. On those occations I often feel my chest aches on the right side and I get a little dizzy when standing up.
Along with this I get lots of twitches (especially in the legs), weakness and sensations in the right leg, burning back pain, weakness in left forearm and wrist and slight weakness in the right shoulder and upper arm. It all started mid june.

Still, I'm trying to tell myself that this is something other than ALS. Lyme, MG, Thyroid, Neuropathy, Conversion disorder (my doctor is a big fan of the anxiety theory). Whatever. I need something to tell myself when I panic in the middle of the night. I keep repeating that I'm only 32 and that that counts for something. If you don't have time for this, I completely understand. However, I have one question:

Would you say that developing symptoms in both arms, one leg, chest and bulbar symptoms as well as twitches in four months is a usual manifestation of ALS, or is it a little fast?

I had somewhat similar symptoms going back to 1980, when I was in my mid 20's. No significant progression until probably now. But I also had 2 abnormal EMGS back then. Please don't make the mistake I did then and for so many months, maybe years, of my life, and let the dread and worry about having ALS paralyze you as if you had late-stage ALS. I am now back in that paralyzing fear, at least a good amount of the time, but that fear was for naught so many times before. Unless you definitely have tongue atrophy, I suspect it is not ALS. And if you do have that sort of tongue atrophy, I would think you would have significant weakness moving your tongue, thereby affecting speech and maybe swallowing. If you can't get peace of mind, I'd get to an ALS specialist and get an opinion, or at least to a neuromuscular specialist, like at an MDA clinic.

Best

Searcher
 

Hyppo

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Thanks Searcher. There's nothing wrong with my tongue movement (I think). I can push and roll and turn and whip it back and forth. No, the problem is that my jaws get really tired and the back of the troat feels thick – like I'm going to snore. Some days speaking is really exhausting.
I did notice yesterday, though, that my tongue is scalloped. I have two very visible tooth marks on each side. This, I heard, can be a sign of atrophy. I heard it can be a sign of other things aswell. The pattern is symmetrical, which I take to be a good sign.

I'm going to see my doctor on monday and have a chat. Like I've said – the neuro appt is not until january – and I don't know of any ALS experts around where I live (Stockholm, Sweden). My doctor thinks I'm making up symptoms as I go and that more or less all of them are due to anxiety. He wants to have me on anti depressants. I don't know what to believe.
I'm hesitant to go on six moths of anti depressants (which is the minimum), but If he's right It may be worth a try.
 

awieleba

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Hyppo

I had the same thing intially with my doc wanting me on the anit depressents. I did it, just to see if it would make a difference and to play his game. It did help me with the fear and coping. I feel like myself again and I am able to get through days with out crying or that parlyzing fear. It did NOT change my symptoms at all. I think it is worth doing just to help cope. I dont want to be on this pills and hope to go off soon. I still have no diagnosed and my symptoms get worse in some areas and a little better in others. My twitching seems like it has calmed a bit. I still get them but I dont notice them all day like I use to or maybe I am use to them....
 

Hyppo

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I get anxiety attacks in the early mornings mostly. Waking up from peaceful dreams to harsh reality is really tough sometimes (even though I don't really know if it's truly harsh in my case or not). But the rest of the day is ok. I worry quite a bit, but my anxiety levels are nowhere near where they were a couple months ago when I was popping benzos like crazy everyday and go from drug induced calm to full fledged panic in a matter of hours.

I don't really feel I need the antidepressants. I've read quite a bit about somatoform disorders and pysical symptoms of depression and anxiety. My symptoms don't really fit in there. I mean BFS is loosely tied to anxiety, conversion disorder can cause weakness, depression can cause chest pain … and maybe I've always had that scalloped tongue? I could go on, but it seems far fetched, and it surprises me that a doctor would lean towards this as his first theory.

I'm thinking of things I could do to try to move forward on this issue until my neuro appt and I've come up with a list of possible actions:
– I could go with the anxitey theory and take the doctors drugs (I'm actually starting CBT on monday too, see what that gives)
– I could ask him to run some more extensive bloodwork (lyme, thyroid, deficiencies etc). Silly thing is I'm actually scared to do this. If it all comes back clean I feel like I'm burning bridges. Like, how will I get to late january if I've ruled out lyme.
– I could ask him to send me to a throat specialist and evaluate my oral issues. If they notice something wrong, I may have a chance of getting an earlier neuro appt.
– I could get a new doctor.

Awieleba: What symptoms do you have and how long have you had them?
 

Zaphoon

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Or, you could just chalk it all up to a "pinched nerve" until your next appointment and lose the anxiety that way.

You walk into the Doc's office and he'll say, What's up with you today?" And you can respond with, "Oh, doc, its just this pinched nerve you still haven't found yet.

The doc will say, "Pinched nerve! Who told you this is all due to a pinched nerve?" Then you can say, "Zaphoon, on the ALS forum! He has greatly helped with my anxiety and you know, the more I think about it, the more I know its just a pinched nerve."

Now, he has to prove to you its not and has to prove to you its something else. He'll also think you're a nut for listening to a zaphoon but, hey, if it works, it works! Its been doing wonders for me, Hyppo. I wouldn't mention your screen name to the doc, though. Could be a dead give-away.:mrgreen:

If you lighten up over all of this and make it an adventure, you are suddenly and wonderfully transported into a whole new world (well, at least for a while). This temporary transportation has worked its wonder for some, here!:-D

Zaphoon
 

Hyppo

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Haha. Yea, I'll try that.

My doctor actually think it's a pinched nerve causing my leg problem – and anxiety accounts for the rest. I reckon he'll be thrilled.
 
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