More Symptoms

[hol1014]

Hi Everyone,

Sorry I posted in the wrong place last time I think....

I have had swallowing problems for over a month and a half now that are constant. Some days they are less noticeable than others, but they are ALWAYS there. The problem I have is with saliva only. It feel like I cannot get it down completely, almost like something is blocking it's path. I also feel a lot of pressure/popping from my soft palette after I swallow.

I went to the ENT on Tuesday who said my problem has nothing to do with my throat and mouth, but my throat and mouth muscles are weak.

On Monday however, I started to notice the fingers/wrist of my right hand felt so weak.... almost useless. By the end of the day my right toes felt the same way. On Tuesday both started twitching and my left toes took on the same sensations.

Yesterday as I was walking from one side of the store to the other I thought my legs were going to give out on me. My calves feel weak and undteady, almost like they can't support my weight and now the toes on my right foot cramp in a way that feels like they want to bend up.

I noticed a weakness in my chest when I lifted little kids all day on Wednesday and I have constant twitching in my lower abdomen.

So here's my questions:
Does this sound like ALS?
Does ALS spread rapidly like this?
Does Bulbar ALS spread to other regions/this quickly?

Here's my major panic. I am off to Florida/Disney for a once in a lifetime vacation next Wednesday. My neurologist appointment is not until I come back. I am so frightened I am not going to be able to get around. I feel so unsteady- My calves feel so tight and legs feel like Jello.

Thanks so much for your help.... I am a mess really.

HOL1014

 

[Jennifer51]

go and enjoy your holiday...best place to be (I know as we have had a second home there for 20 years). I have bulbar, and in my experience, als does not spread that quickly, I have had it for more than a year now, the weakness takes a long time to come on, usually at least over several months if not longer. I think you are thinking about things you have read too much. Have a good holiday and dont start to worry until a doctor has comfirmed you really do have something to worry about. There are a multitude of things out there it could be before you even think about als.

 

[awieleba]

HOL~

Go on the trip and have fun! THere will be time to worry when you get back, go and do not over think anything.At Disney make sure you wear comfortable shoes and rest. It does sound like you have something going on but no one could tell you if it is als related. It could mabe be MG, that can present with swallowing issue's. I know that this is a scary time. All you can do is see a neuro for this and go from there. My legs felt like jello over the summer, they are not greatly better but they dont feel like jello anymore and have not got significantly worse. So, try not to be alarmed and assume that things are going to get worse. ps. I have no diagnosed yet and i have being going through this for a year.

have you had a swallow test? Make sure you request a emg at your appt. Your neuro will able to tell alot from your exam. Hang in there! and trust me, have fun next week and dont let this consume your thoughts while you are at the happiest place on the earth. My parents and 2 sisters and all thier kids just got back last week, and loooooove it and go every year. Wish I could of!

april

 

[bryan12]

just a quick question
will als twitching affect face, eyelid, butt area?

 

[ktmj]

I think any skeletal muscle will twitch, but with many conditions and not just ALS. I don't think eyelids are impacted in ALS - not sure why.

 

[bryan12]

i am wondering because i heard that ALS affect limbs muscles, lungs muscle, breathing muscle.

but i am not sure is it affect some other muscle like the eyelid, facial, or even body or torso muscles.

 

[hol1014]

I guess I am just afraid that with how quick this has progressed this week by the time I go see Minnie and Mickey I won't be able to walk at all!

My legs just feel really stiff and jello like.
I twitch every now and then, but nothing to serious (except for my abdomen which twitched constantly).

Any ideas what to expect when I go to the neuro?
Again are these typical symptoms/progression?
My throat is manageable... After almost 2 months I've learned to deal, but the new stuff has me so freaked out.

Thanks so much!

 

[BethU]

Hi, HO1014 ... This doesn't sound like ALS. One thing is that symptoms don't jump around, especially between bulbar and limbs. Usually bulbar starts with slurred speech and Rose has posted in the past that when swallowing issues present first it indicates that it is probably NOT ALS. Also, swallowing issues are very common with benign fasciculations. Anxiety, pressure and stress can bring them on, or intensify whatever is going on. So that "lump in the throat" feeling indicates it's NOT ALS. I've never heard of anyone with bulbar ALS having that sensation and it's been discussed on this forum quite a bit.

Even good things ... like vacations, marriage, babies ... create anxiety and stress in people's lives. If you have trouble walking, get a cane for balance, or ride around in trams or trolleys. Disney usually has fun ground transportation available.

I know it's hard to ignore these symptoms, but I bet when your vacation is over, you'll find that you're feeling better and more relaxed. Hopefully, your doctor will then be able to pinpoint the cause quickly and provide more relief.

Have a great time. I don't think you have to worry about ALS! Say Hi to Mickey and Minnie from the left coast.

 

[Jennifer51]

i am wondering because i heard that ALS affect limbs muscles, lungs muscle, breathing muscle.

but i am not sure is it affect some other muscle like the eyelid, facial, or even body or torso muscles.

I was diagnosed psuedo bulbar one year ago. I twitch in every possible inch of my body. Facial, eye, nose lips tongue, loads and loads along my midriff, stomach, arms legs..EVERYWHERE and mine do jump around all over the place all the time. I thnk the only place that has not twitched is my ears.

Bethu..I value your opinion...you said that symptoms dont jump around...please tell me your thoughts on this...I would just LOVE to go to my doctor and asked to be tested or retested for something different and find I dont have this at all. I want to find I have something with more hope

 

[wheeler641]

hope I am not asking a dumb question but what is psuedo bulbar and how does it differ from just bulbar, thanks margaret

 

[Jennifer51]

wheeler641.....
I have it and I dont understand either, despite several people on the forum trying to explain the differences, it is just beyond me. All I know is that I was told I have it, following all the normal tests. I cant speak, legs,arms, balance and breathing are now going. Can only just get around indoors, no chance outside, cant climb stairs at all, if I fall down, cant get up. My phylosophy is that I have mnd (as it is called in the uk) does not matter to me what it is called, I have it and must try to fight it, and I will do anything to help doctors find anything which might possibly fix me.

 

[BethU]

Jennifer ... you caught me, just reporting by rote things I've heard and read and experienced.

But in my experience with ALS, and with what people have reported on this forum, with ALS you don't get a swallowing problem, then maybe your left hand gets weak, then you get slurred speech, then your right leg goes, etc., etc. My experience with bulbar symptoms is that the weakness will progress throughout the bulbar area until everything is affected. Your speech will go, then lability will appear, then swallowing difficulties, then saliva, breathing, etc. Not necessarily in that order, but roughly.

At some point it will move out to other areas of the body, but in a consistent manner ... not left hand, right foot, left arm, etc. As I understand it, and have experienced it, there is a logical (but not predictable) progression ... my left hand has a great deal of weakness and atrophy, as does my left arm. They are both weakening together at about the same rate.

I've read articles explaining the diff. between bulbar palsy and pseudo bulbar palsy, but what I remember sounds fishy to me now. I'll see if I bookmarked anything.

Bulbar palsy is not the name of a specific disease. It is a collection of signs and symptoms (that is, a syndrome) which may be associated with particular diseases. For example, a bulbar palsy can be a part of ALS, stroke, inflammatory diseases, etc. But it is not exactly correct to say that bulbar palsy "leads to" ALS, for example.

In particular, bulbar refers to the lower brainstem, which is the control center for the cranial nerves 7-12. Palsy means weakness. That is, if muscles controlled by cranial nerves 7-12 are weak, then you talk about a bulbar palsy.

Symptoms would include trouble speaking, swallowing, coughing, using the tongue, and perhaps some trouble with facial expression.

Bulbar palsy is when the signs point directly to brainstem or lower cranial nerve damage. Pseudobulbar palsy results when the connections from the cerebral cortex (above) are disrupted, so the voluntary control is messed up but there is no intrinsic damage to the brainstem or cranial nerves themselves. Pseudobulbar palsy is seen in certain cases involving strokes on both hemispheres of the brain, and in certain degenerative disorders.

I don't know if this means that pseudobulbar can be treated and cured? If there is no intrinsic damage, couldn't it be reversed? If the "messing up" is caused by stroke, shouldn't therapy help?

 

[wright]

Bulbar means that the lower motor neurons are affected and these neurons reside in the brainstem. The brainstem looks like a "light bulb" which is why it is referred to as the bulbar region of the brain.

Pseudobulbar (pseduo means false or fake) means that the upper motor neurons that innervate the lower motor neurons of the bulbar region (once again, meaning the brainstem) are affected. These upper motor neurons . . . like all upper motor neurons . . . are located in the cerebral cortex.

Unfortunately, once a cell in the central nervous system (i.e. brain or spinal cord) dies, it cannot be fixed.

Yes, if a stroke is the cause of symptoms and the neurons have not been severely damaged, then they can be repaired. If they do die, then other adjacent neurons will take-on the work of those dead neurons. Unfortunately this doesn't happen with ALS because it is a progressive disease where all of those neurons are dying.

I hope that helps.

 

[hopingforcure]

Thanks Wright, was just going to expain that. Jennifer your diagnosed. is Progressive Bulbar Palsy, The psdeu is a UMN symptom and not a true diagnosed. just a symptom of UMN problems.

 

[olly]

like wright and hoping said pseudo is umn.
those with bulbar onset pls would have pseudo bulbar palsy.
jen,they do call all forms mnd here in the uk.

as for twitches,only had them in my weakest areas legs/left foot,shoulders and upper arms in my body.
i had them(still do occasionally) in my jaw /lower face muscles that are weak and effect eating/articulation of speech(sound like i have verbal ataxia sometimes:roll