Bulbar symptoms?

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tini

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Hello, could you please tell me your opinion if the symptoms which I have could be ALS or PBP?

Im 38 years old woman.

Since august I have twitching all over my body, both upper arm weakness, occasionaly
weakness in my flexors neck muscles, strange feeling in my tongue.

I had 2x EMG /in august and september/ which were negative.

The arm weaknes i dont have anymore.

In october i was on agressive treatment for Lyme disease ( I have Lyme since 2006 ). I took strong combination of antibiotics, antimycotics and immunity boosting meds.
While I was on this treatment I start to noticed small problem with swallowing in my esophagus. It was like dry bread going down the esophagus slowly. After 1 month I finished the treatment.

But now during last month I developed following symptoms. It worsen day by day.

- Problem with swallowing in the throat area, I have feeling that dry food like bread goes down slowlier, with other food and liquids i dont have problems
- Muscle stiffnes on my neck (sternocleidomastoid i think on both sides)
- Sometimes muscle stiffnes under my chin
- Since last week I developed stiffnes around my mounth ( mostly under my lips area ) - i can feel this stiffnes/ tightness sometimes when Im speaking. I can speak clear ( no slurred speach) but I feel some stiffnes on my face while articulating.
- I have strange feeling in my tongue and in the mouth - like tingling, and sometimes like electricity
- 2 times i feel and I saw my tongue twitching after eating ( it was like electricity feeling and I saw 3-4 twitches in one place on the tongue. After while it stopped.


Do you think this is ALS or PBP?
 

lgelb

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No, I do not.

High-dose, combination long-term antibiotics are strongly associated with adverse effects, as is any combination of antifungals and "immunity-boosting" supplements. The combinations that certain practitioners commonly use in Lyme can be very dangerous.

I would discuss your issues with the prescriber and get a second opinion with a reputable infectious disease physician as to your course of treatment before undertaking any further Lyme treatment.

Best,
Laurie
 

tini

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Hello, thank you for your reply.

I had another EMG and it was clear. They did EMG on my sternocleidomastoid, than on other muscles on neck, than my trapesus, arms and limbs.

But the main symptoms I have its on my tongue. I have burning sensation in my tongue and in my mouth. When I go to sleep I can feel sometimes something like little movement of my tongue behind my teeths. I can feel this only when I close my mouth and close the teeths. But when I look in the mirror I dont see my tongue is moving. Sometimes i feel something like electricity in the top of my tongue. My top of the tongue is little red now. Last 3 weeks I can see my tongue change little bit, its more fissured. Im afraid this could be start of the atrophy? My speech is normal.

I want from the doctor that if he could do the EMG from my tongue, but he refused to do it and tells me there is no need to do it. Because the muscles he did EMG on - were all clear. He tels I have no ALS and MND. Do you think I dont need EMG from my tongue? Do you think muscles he checked are enough to rull out MND without checking the tongue?

The current symptoms which I have now are:

1. Tongue problems which I mentioned above

2. Sometimes i feel food is going slowlier down ( only dry foods like bread and some crackers )

3. Sometimes twitching in my right arm and other places

The thight feeling on my neck and around my mouth dissapeard. I dont have it anymore. My face muscles are now ok.

Just the problems with my tongue and mouth. What is your opinion please?
Thank you
 

Nikki J

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You should trust your doctor. They know what muscles to do. The sternocleidomastoid is perfectly fine for checking bulbar. they even continued and did other muscles in the area. Your symptoms don’t sound like ALS anyway but you proved it with emg. Please continue to work with your doctors but your answers are not here
 

tini

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Thank you for your replies and your help!
 

tini

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Hello everybody, I want to give an update of my symptoms.

Unfortunatelly, my swallowing gets much worse. I write for you how my swallowing problems started. Sorry for my english - Im from Europe.
In october I start to noticed only swallowing problem in my ESOPHAGUS ( only dry food was going down slowly ) After one month I started to feel the same in the throat (or neck area). Sometimes dry food gets down slowlier.
But now I start to notice sometimes the food sticks in the throat that I must swallow 2 times to get it down. Im really scared it should be bulbar onset. Sometimes I feel my jaw / masseter?/ weird. It happened few times when I woke up I had on one side of my jaw feeling like the closure went to do side - but after a while it was ok.
I went to ENT he did endoscopy of my esophagus and found only GERD. But I dont think these symptoms is causing GERD only. They are getting worse since october.

Except my swallowing problem I have whole body twitches. Not constant, just one or two twitches in one place than 1-2 twitches another place etc...

They did in december 3d EMG, which came all negative. But from bulbar region they did only - sternocleidomastoid and trapesius muscle. In september they did EMG of my genioglossus as well - but it was before my swallowing problems started - and it was negative.

Im so scared because of this swallowing and dont know what to do. My neurologist gave me only magnesium and tells me she could do nothing else for me.

I have no weaknes, no slurred speach, my only symptoms at the moment are:

1. Swallowing problems which are getting worse. I feel them in the throat (or the neck area) and in my esophagus.
2. Whole body twitching, not constant
3. Sometimes weird feeling im my jaw in the morning. It happened few times - only in the morning.
4. Sometimes weird feeling in my tongue ( like electricity ).
5. Since october I have fissures on my tongue

Could you please tell me your opinion what this should be? If the dysphagia is getting worse could it be bulbar onset?

Thank you
 

Nikki J

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Hi
as I said before they know which muscles to test and you were tested appropriately for bulbar. They don’t need to do all
weird feelings, twitching and fissures are not concerning for ALS and given your emg the swallow shouldn’t be either again you need to work with your doctor. Perhaps a swallow study if you haven’t had one
 

tini

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thank you Nikki, yes I think I go for this swallow study
 

Nikki J

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Meaning you had one? If so what did it show? Or you are going to have one? if so great. It will give you and your doctors more information
 

Blackeyes

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3 negative emgs congrats you don’t have ALS. Take care but I don’t think this is the forum for you. Once your dr actually gives you a diagnoses I’m sure you’ll find the proper forum to be at.
good luck
 

tini

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Hello everybody, sorry that I’m writing again, but I’m so scared. In my previous posts I was writing about my swalloving problems - they are gone now, my swalowing is OK now. I don’t have any problems with swallowing at the moment. BUT - my tongue changed a lot in this 2 weeks. I think it starts to look like atrophy on my tongue. I have dimples, dents on it - some of them i had before but definitely there are some new or more visible. I’m so scared.
Could you please tell me, is there something else than ALS/MND that could do the tongue atrophy? My tongue is now wavy in the middle as well, and in this 2 weeks it is worse day by day - I can see everyday that it is changing.
What is it going on? I don’t have slurred speach. The only thing which I noticed 1 month ago is, sometimes when I say words wich starts with SL (slowly, ....) it sounds to me like it does some ,,smack,, sound in the back ( the sound which we make when we eat ) But it’s just minor, i don’t know if it was also before or if I noticed it only now. But nobody else noticed it. My speech sounds normal to others. I can move my tongue normal and stick it out normal. But definitelly my tongue starts to change appearance.

My symptoms are now:
- Tongue appearance changed - like it starts atrophied ( new or more visible dimples)
- Twitching all over body ( not constant, a small twitch here, than another small twich there, than no twich, than again one small pop in the leg, than one small in the arm, than nothing, ...)
- Minor problem with jaw, sometimes when I wake up I have something like wrong bite on one side, but than it disapeared. On one side of jaw I hear/feel my joint pop (click) when I open my mouth. But I think my joint pop (click) on that side in the past as well.

Thats all the symptoms which I have now. Could you please tell me, is there something else what can cause tongue atrophy? It is definitelly different than few moths ago with more dimples. Thank you.

I attached a picture of my tongue. (removed, no purpose)
 
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Bestfriends14

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Just stop, please.
 

lisa g

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Why are you chasing ALS? You have had 2 clean EMG's? You stated you've had symptoms that come and go, that's not how ALS works. So many on this forum myself included wish we had clear EMG's. You need to work with your doctors to resolve your issues. But we can tell you with confidence this forum is not where you should be spending time. Put all of this behind you and enjoy your life.
 

lgelb

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Before I close this thread, since there's no reason for you to be here, I'll just note that you may want to ask your dentist about a night guard for your jaw issues.

All the best.
 
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