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corwin

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Hi to all.
I have some more threads but they are closed.
I way saying that i won't write here again but i think it will be ok for another people to find more information.
So I have some symptoms for 1 1/2 years.. mainly bulbar.
I am 32 years old men in good shape( i was before symptoms)
If you can read my old post you will see what are my complains.
So for now everything has progressed.
I have - more tongue atrophy. I will put some picture. Intereating in this kind of atrophy is that it is almost 100 bilateral but in the side line of the tongue. In the center there is nothing. The tongue is quite strong, i can moove it, to touch my molars, push the cheeks, but it is getting more and more atrophied. The most interesting part is that it is almost 24/7 hours a day tingling and burning. Where is tingling there is the atrophy. The only thing that stops tingling is prednisone. When I was on 60mg a day I almost forget about tomgue issue. But now when I taper it down it to 25mg a day, it is constant
- twitching. My whole body is twithching like hell...
From foot to head. Even in ears. With prednislne twitching is less but still there.
- swallowing difficulties - i just cannot swallow or when i do it my throat is clicking or is weak. It is interesting because i don't choke often. Mostly I have trouble with saliva. I can swallow 10 pill on one time, to drink 500mm. Water for 10 seconds but cannot swallow my own salliva.
-dry eyes with some pain
- my whole body is shaking. Every miscle is shaking from a smallest exersise.
-heat and cold inrolerance. I am shivering in cold and feeling like i am melting in hot
- chewing difficulties. My jaw muscle are getting stiff my steak or nuts. This is better now, but was terrible.
- trouble breathing
-weak soft palate - it is rising ok but it is getting down. The uvula now is touching my tongue
- 1 month ago for.1 week my face was like a mask
I just cannot smile or make impression. Now is ok - this stays for 1 week.
- I have whole body weakness. Not clinical but i feel jelly legs.
- my rigjt eyelid twitches for.3 months non stop..
- the last that consinced me i have als is from 2 weeks
When i exhale i can feel my ear poping like eustachy tube is not sealed and i can hear the air going behind my nose. I cannot explain it but i think it is from weakness in soft palaye or airwave muscles.

It is interesting tht some das i am ok but another not so ok.
By ok I mean sympthoms are less prominent.

I have no major speech change, just this atrophy and burning in the tongue. I have some pictires from before and after and deffinitelly tongue is getting smaller. Some days i feel so fatigued i cannot speak, another i feel quite ok.
Till now i have 5 clean emg.
Last one was 2 months ago before nasal speech and it was clear. They tested but only 5 muscles - 3 in legs 1 biceps and one muscle on the jaw...

Really don't know what is happening but i am getting more and more desperated.....
The 'good' thing is I don't have tongue twitches. Only sometimes.and i feel.them - they are like electric shocks. When tongue is resting there are no twitches.
Blood test for.everything are clean...
Hoping(it is so stupid to say it) for myasthenia but blood test are in normal limits.

Deffinitelly something is wrong...
I don't know... doctors also... everything starts.with one flu and my lymph nodes around neck.were enlarged...

My question for members with more experience:
Isnt it weird? Must it not progressed more rapidlly for 1 1/2 ? How can my tongue loss tissue without dirty emg and on 1/2 of his size to be strong enough? How can explain this thing with prednisone?

Greeting

Corwin
 

corwin

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Just to add.
My crk levels were always a little bit high - around 205- 210 but after taking high dose prednisone they are 49-55...
Also.strange
..
 

ShiftKicker

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Corwin, according to your posts, you've been having problems for up to 7 years. While I can't say what you DO have, ALS is not your problem. I'm not sure why you think the people here can help you.
 

scaredwifetx

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Corwin, we are not doctors and after seven years it's still not ALS. We are struggling with a life altering diagnosis and disease.

The limited time we can spend on this forum should be to support those affected by ALS as this is an ALS forum.

Please be kind to us and youself and listen to the doctors. Please find an anxiety forum and make a change in your life. You have a life ahead of you so live it and stay away from this forum. It's not a place you should be visiting.
 

Nuts

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Corwin,
You've been tested and tested, and it's not ALS.
Unfortunately, the more you read here the more likely you will start to think you have symptoms that point to ALS. Please do yourself a favor (and do the folks here a favor) and let go of the idea of ALS. If your symptoms are real and not stress induced, you need to be looking elsewhere for the cause.
 

corwin

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The most concerning part for me is the slow but steady progress with tongue shaping changes and swallowing difficulties. Also weak soft palate..
Yes I twitch sometimes in tongue but I twitch also and bodywhide...
Also this paresthesia feeling.... It is veryyyy strange. Where i feel the burning in the tongue, there is the problem..And how it dissapear with prednisone...
Also numbness and tingling i feel now in lips...
I don't know...
And the problem is not from 7 years( I have nerve pain problems and so from 7 years) the problems are from 1 1/2 years.
I know you are not doctors so I just share my story with the hope somebody can have the same symptoms....
I hope in the end this will be just neuropathy small or large fiber but who knows...
It.is very strange and debiliating.... I am responsible for many people ( have succesfull business with over 100 employers) and my familly with children and just can't do what i am suposed to do - to take care for them.and me.
So one more time sorry If I take you time but I really feel at the end of the rope...

Greetings

Corwin
 

affected

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All those things you feel are great as they point away from ALS.

I'm a bit concerned that you say
so I just share my story with the hope somebody can have the same symptoms....
That sounds like you are really determined to find someone who will say they have ALS and have your symptoms. That is something you should go and discuss with your doctor as I believe it is a key.

I feel you do have some kind of neuropathy going on, but it just doesn't match ALS. That is the best thing anyone can tell you.

In the meantime, you need to stick with your doctors as we have run the length of what we can offer here. All the best.
 

corwin

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Update...
Today I was to local neuro.
Did an EMG.
Find psw and fibr in tongue + pollifasic mups..
Als some changes in legs.
Tommorrow we will spek about the results...
 

corwin

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Last update....
Swallowing got worse..
Tongue burning pain and atrophy worse.
Weakness in tongue worse - the back of tongue is not moving.. numbness in lips..
Still no fasciculation in tongue.
Went to neuromuscular doc, possible bulbar palsy. Almost sure about it or can be myogenic changes - because of the emg rusult. They found pollyphasic 50%mups, short with smal amplitude and duration and early requitment patern. Unlykelly myositis because of low cpk -210 but they will test...
In legs they found giant mups.
Trapezeus is ok, so are the jaw and temporal muscle...
So nothing else is left - bulbar palsy 90% sure.....
One more time - IT CAN BE ALS with sensory involvment, so sticky is not 100 correct.
Hope for the best .......
 

Nikki J

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When did this happen? Did you see a new doctor after the one that did the EMG?
 

Atsugi

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Corwin wrote: "I know you are not doctors so I just share my story with the hope somebody can have the same symptoms...."

This website and our time are not here for random *******s to compare random symptoms from random diseases.

Corwin also wrote: "One more time - IT CAN BE ALS with sensory involvment, so sticky is not 100 correct."

Perhaps we should let random strangers write our stickies for us. Better yet, let him give advice to people who have ALS. No?

Corwin, I'm sure your health is messed up, but if you expect to come here and educate us about ALS... Just get lost.
 

starente15

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So one more time sorry If I take you time but I really feel at the end of the rope...

Corwin - While you are experiencing something, the folks here who know ALS don't believe that's what it is. You should continue to work with your doctor to determine what's really going on. At this point, no one on this forum can provide any reassurance so it's time to go back to the doctor for more testing and address your anxiety around these symptoms on an anxiety forum or with a psychologist.
 

corwin

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Thanks to all for the support.
If it is something else than MND i will quit this forum and never go back... but just cant figure out what can cause bilateral tongue atrophy and swallowing problems. It is veey interesting becouse the atrophy is bilateral and ONLY the lateral muscle are wasting away. The tongue in center is just fine. Where the atrophy is there is the burning and tingling, so I supose in the best way some neuropathy or myositia but... who knows... Because only this muscled are affected, the tongue is still strong so i thing something focal, but why bilateral?? Ore something autoimmune althout ana is negative...
 

corwin

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styloglossus muscle is affected bilateral. All other muscles are ok.
I have a question to people with bulbar onset.
Did you feel pain? Tingling? Burning?
How Can i have atrophy (confirmed.by neuro) and to move very quick my tongue side.to side( 340 times.in a minute), to touch my nose, to touch my molars and.to.make.really hard resistance to cheeck push?
Did your tongue atrophy start only in one.muscle.or all the tongue surface is affected?
Do you have palate noise when breathing and ear poping and pain when speaking?
Do you have lip numbness and face and masticatory muscle.heaviness?
Sorry for long post.
All.this is like focal myopathy for my or neuropathy but.no doctor can give me answer... with the help.of prednisone.i was a liitle bit better but the side effect was terible..
Greetings

Corwin
 

WendyWooG

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Corwin
The information and people's opinions on here are all shown in the stickies. You don't agree with the stickies so why are you bothering to ask our opinions? We agree with the stickies.
Wendy
 
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