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Worried53

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Learn about ALS
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AUS
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Victoria
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Victoria
I'm 53 male and have pretty much stressed myself into a mighty big mess about bulbar fears.

All this started in Dec 2012 with calf cramps and calf twitching. This continued for another month, the cramping stopped but the twitching continued. By about March 2013 the twitching was pretty much all over and I was also getting burning pain in my lower legs and feet.

My doctor thought this might be symptoms of MS so I was referred to a neuro and had spine and brain MRIs which came back negative for MS. My clinical was also fine, this was in May 2013.

The twitching continued and I noticed I was losing weight in my thighs, arms, hands, pretty much all over really. I put this down to stress and high anxiety, especially when I noticed I started to put more weight on across my stomach.

In Aug 2013 I had EEG, NC, and EMG testing. The EMG showed PNH and it was suggested I have BFS, and no signs of MND. The EMG was done on both legs, arms, hands, and my tongue through the chin. I was so relieved when I was told no MND. Clinical at the time was also clear.

However in Dec 2013 I started to have problems dry swallowing, the swallowing had become very tight somewhere in the upper area of my neck. Food would go down fine and swallowing wasn't tight with food or drink, just when I dry swallowed.

Fast forward to now and I still have major problems with what I think feels like very tight neck or swallowing muscles but usually only when I dry swallow. I have however now started to notice that sometimes I have to swallow 2-3 times to get all the food to go down, this is mainly only with dry food though.

What is strange with this though is that if I place my fingers gently on my neck around the adams apple area the tight swallowing sensation doesn't seem to happen. I've also noticed that I seem to be clenching my teeth a little when I dry swallow and that makes it tight everytime. If I dry swallow without my teeth together it usually isn't anywhere near as tight but the dry swallowing feels weird.

I realize that this is often classic anxiety/stress symptoms. My anxiety and stress is pretty bad for over a year now because of the twitching and what to me now looks like all over muscle loss. I guess the stress is doing a number on my weight. My hands are looking atrophied, I have lost significant bulk from the top of both hands (not so much on the palms though) especially between the thumb and index finger and I twitch a lot there. My hands have become very boney and the veins are very prominent, same with both my feet. I've also lost bulk from my thighs and my legs are becoming quite fatigued easily. Have also lost weight in my arms.

I don't seem to have any loss of motor functions other than what has become very tight dry swallowing. I am seeing a psych and counselor for my anxiety which seems to be developing into depression, I am also taking anti anxiety meds (Remeron). I'm trying my best with my mental health which I admit is certainly a problem.

I saw my neuro a couple of weeks ago and told him that three months ago I developed this very tight swallowing sensation. It's not tight where the food goes down, it's just very tight in the neck but only when I swallow. My neuro didn't seem concerned because I can swallow food and drink and my voice isn't slurred. Right now my voice is very hoarse and my mouth and throat are extremely dry. I've had a cold recently so I'm blaming the hoarseness and constant coughing on that.

Does this tight swallowing sound bulbar related? I've also noticed that my twitching has increased and have also been twitching in my face and sometimes in my tongue. My tongue often has some sort of electric burning sensation all down the left side, I've also noticed that the soft palate seems much lower in my mouth that it used to be and doesn't seem to rise much when I say aghhh.

The tight sensation seems to be in the right side of my neck and I've also noticed what I think could be some TMJ type clicking going on in the left side. I pretty much had a meltdown in Dec 2013 and clenched down as hard as I could while wearing my dental splint so maybe I did something to my jaw, smart move not!

If I'm careful with not clenching teeth or pushing my tongue too hard onto my front teeth when I swallow the swallow feels weird and there's throat clicking which I feel and hear in my left ear but it doesn't feel as tight.

Any thoughts appreciated. I'm so scared and stressed and don't really know what to do. My neuro said I don't need another EMG now (had an EMG in Aug 2013 before this swallowing problem). I don't choke or gag on food.

Thanks for reading my rather long first post.
 
I'm 53 male and have pretty much stressed myself into a mighty big mess about bulbar fears.

In Aug 2013 I had EEG, NC, and EMG testing. The EMG showed PNH and it was suggested I have BFS, and no signs of MND. The EMG was done on both legs, arms, hands, and my tongue through the chin. I was so relieved when I was told no MND. Clinical at the time was also clear.

Any thoughts appreciated. I'm so scared and stressed and don't really know what to do. My neuro said I don't need another EMG now (had an EMG in Aug 2013 before this swallowing problem). I don't choke or gag on food.

Please remember you said any thoughts appreciated.

You admit you have stressed yourself into a big mess fearing MND.
You neuro says nothing is apparent after extensive testing.
More than a year goes by without any progression - bulbar would see you slurring, choking or gagging on liquids if not foods and your EMG would have shown something.

I'm therefore quite unsure why you are posting here?
I vote that your neurologist is far more experienced and learned than I, even though I have been living with a husband with bulbar onset for the past 18 months, and he says this is not ALS/MND.

Honestly, your symptoms seems to 'progress' with your stress levels, ALS does not, it just progresses and that means you really start having genuine big issues and everyone is hearing and seeing it, especially after this length of time.

I hope you can work hard to find the root cause of your fears and address them, feeding them by trying to get us to buy into your fears and go over it all with you is a symptom you should bring up with your therapist. I say this sincerely and kindly.
 
Tillie

Thank you for your reply. The only progression if you'd call it that is that I developed this swallowing problem 3 months ago. Also I'm continuing to lose weight and especially thigh and hand muscle bulk but I realize that stress can do this or even just aging. That's why I was honest and up front about my mental health.

The only real concern I have is my difficult swallowing. I do appreciate your reply very much and I apologize for inappropriately posting in this forum.
 
Doesn't sound like ALS - to me. But coughing and hoarseness and some swallow issues are well documented side effects of some hypertension meds, GERD and even apnea.

Go back to your GP and start again. Maybe consulting an ENT? Also, as you well know, anxiety can exacerbate many symptoms. And yes, aging does play a part in "thinning muscles" as well. Many retirees in my own family are losing their "baby fat" ... Getting bonier each year. They have no neurological disorders.
 
BFS commonly causes a lot of weight loss and trouble putting it back on. LeAnne, the main coordinator behind the BFS Recovery support group, would prouldly boast to me when she forced herself back into the high 90's and was thrilled to hit 3 digits again. Many others have had similar troubles.

The "throat click" you are experiencing is probably a muscle twitch hitting your hyoid bone. They are also a pretty common complaint, you aren't alone there.

As for you swallowing problems, I don't want to feed your anxiety too much info to start faking you out with greater verisimilitude, but there are good reasons your neuro isn't worried.

Now, all that said: BFS doesn't make you immune to other problems - the types the folks above me on this thread have suggested, or future medical illness. So if you get a symptom that causes a real functional problem, even if it sounds kind of BFS-y, it is better to go have it checked out by your primary care doc than to ignore it. At worst you wasted your time, right? And on that note, it is really important to have a primary care doc that can accept you have health anxiety, that you have benign neurological symptoms, but that you also need to be taken seriously as patient anyway. If you find one, hold on to them forever, they are worth their weight in gold.
 
hi,
your post sounds very similar to my experience..I started with some leg weakness and twitching about 14 months ago. Went to neuro about 4 months after that and had a clean clinical as well as clean NCS/EMG test. Twitching moved to all over. Perceived weakness etc in my legs improved after going gluten free and taking Vit D prescribed by rheum since my levels were low. Thought I was improving and was very happy with that. Then a few weeks ago noticed my hands getting thinner also looking older I am 41 btw. After I noticed I was having a clicking sound in my throat upon dry swallow also. UGH. Went back to GP and they are referring me to an ENT. I can still eat and drink and my speech is fine. I also do sometimes get twitching in lips or neck (not tongue though). Anyway, I am in same boat as you but they diagnosed me with post viral CFS/ME instead of BFS. As above poster mentioned BFS group pretty helpful and our symptoms not uncommon for it. I have a past history of hyperactive thyroid so my guess is something rubbing around that area in y throat like hyoid bone. Anyway, if your swallowing issues still other you may be worth it to get ENT to check you out. My appt is Mar. 25th I will try and come back to this thread and update on what they say..Good luck.
 
We've all been in your shoes and as much as we know you hate hearing it, this is a wait and see diagnosis fueled with denial. This disease is do sporadic that no symptoms ate the same. I came here in April just knowing that my dad would not have ALS and now I'm writing his obit. It sucks playing the waiting game, we know, we've been there. As hard as it is, relax, wait it out and live your life to the fullest.
 
This does not sound like ALS to me either. Too much searching the web can really cause much stress and anxiety. I would suggest that you believe what your neurologist said and more on with my life.

rick
 
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