Unusual onset pattern

[Glopez1979]

To all the CALS and PALS,

I have been on this site now for three months. I have been to a PCP, neurologist, and neuromuscular specialist. I have had clinical exams and two clean/normal EMGs. I have had every test run on me, and yet, there has been no diagnosis.

Since June, I have had progressive muscle weakness in my arms and legs. The onset started with a tight feeling in my shoulders and hips, and then there was subsequent weakness (and I believe atrophy of my limbs). I also have been having swallowing and chewing issues. I now have to consciously swallow my saliva, and if I chew something like a steak, my jaw gets tired. I also have muscle twitches. To me it seems like ALS. The only thing keeping me from be certain was the proportional bilateral nature on all four limbs along with bulbar symptoms becoming weak at the same time.

Does anyone have any idea what this might be? I know none of us are doctors, but I have spent hours trying to find something that aligns with what is happening to me. The only thing that makes sense is ALS. I am not sure why the EMGs did not detect any issues even though I have become much weaker in these three months. My thighs feel like they are burning when I walk. I have also noted that my fingers and toes feel stiffer. I don't have the same level of dexterity. Please any feedback would be greatly appreciated.

 

[Nikki J]

What did your clinical exam show? Did the neuromuscular specialist find clinical weakness, abnormal reflexes, spasticity or note atrophy? What did they say was in the differential?

Since your description of how this started does not sound like ALS and your EMGs did not show ALS ALS seems unlikely. If your clinical exam by the neuromuscular specialist did not show abnormalities that s/ he told you looked like ALS I am not sure why you are pursuing this rather than whatever road you were told to take?

 

[Glopez1979]

Dear Nikki J,

You are one of the members whose insight I am glad I am getting with my circumstances. There was nothing abnormal in the clinical results in regards to reflexes. The neurologist did detect some minor spasticity in my thighs, but nothing that caused him concern. The EMGs were done on my limbs. I believe that the weakness and atrophy are in my deltoids, traps, and spacula. In some of my readings of postings members have said that these would not be detected. I wish Wright was still around. He seemed to be the EMG guru. You make a very valid points, it is just that I cannot explain progressive muscle weakness with signs of atrophy and bulbar issues any other way. In all that you read, can you thing of anything that was proportional in all the limbs and the bulbar region. I forgot to mention that I also had tightness in my left cheek near my nose at the same time that the bulbar issues started. Any ideas?

 

[Nikki J]

You did not answer whether the doctor detected weakness or atrophy and what differential you were given. Wright would say normal EMG= no ALS. He said that many times. So far nothing you have said indicates any clinical abnormality was found

 

[Glopez1979]

Nikki,

No, the doctor did not detect atrophy (although he did not look at my back or shoulders). I am a pretty strong person (I weigh 205 lbs, so I believe that even though I have lost strength and indeed weaker, the clinical test did not reveal those issues. Yes, Wright always said Normal EMG = No ALS, but he did acknowledge once with a member that had a normal EMG that that back is a hard place to get readings. The thing that I cannot get out of my mind is the progressive muscle weakness. Slowly but surely my arms have been getting weaker and weaker. I even have to brace my elbow on the table to pick up a pint glass. Do you recall anyone have bilateral limb and bulbar onset? The PALS and CALS know that when it comes to ALS, there are no rhyme or reason for anything (including progression or onset).

 

[Glopez1979]

Atsugi, affected, lgelb, do you all have any ideas?

 

[GregK]

You begin your description by noting weakness in arms and legs.
Were this the case, the emg would have caught it.

You also describe sensory issues (eg. tightness, burning). These are not ALS issues.

Atrophy isn't something you 'think' is there; it is obvious. Think 'concentration camp inmate'.

Nope. Doesn't seem to be ALS.

 

[Glopez1979]

Thank you Nikki and Greg for your input. Does anyone has any ideas of what can cause the symptoms that I have listed? It is just rare to come across any disease that effects both limbs and the bulbar region of the body. To all the UNM dominant PALS or CALS, when you lost dexterity in your hands and fingers did they seem to get tighter and then you lost your ability to manipulate them? How would you describe the loss of your dexterity?

 

[Glopez1979]

Also, to all the PALS. Did you have a tightness in an area and then have subsequent symptoms? So far the pattern is tightness/strange sensation and then symptoms come afterwards.

 

[codyclan]

The doc would have also detected clinical weakness. Clinical weakness is different from feeling weak. To repeat Nikki's question what did the doc say with regard to a differential diagnosis?

 

[Glopez1979]

I was not given a differential diagnosis. I have now entered the "wait and see" phase. I still am not sure how a doctor can detect clinical weakness unless one did a series of strength test over a period of time. What if the atrophy and weakness are perfectly symmetrical? As I have wrote my onset of symptoms has been symmetrical in my shoulder area and hip area which in turn have effected my arms and legs. Also, the bulbar issues that I have having. I can swallow liquids fine, but it is getting more difficult to swallow solids.

 

[Glopez1979]

I should also add that my jaw is weaker. I have also noticed that I am frequently wiping my mouth when I eat or drink because I am slightly drooling. I also have more saliva in my mouth because my throat will not swallow unless I consciously do so. Does anyone have any possible ideas of what may be effecting me?

 

[affected]

I think what you need to understand is that this is an ALS forum. We constantly say we only know ALS and we know it really well. We can't and won't start suggesting other diagnoses to you.

Your issues just do not line up to ALS. This is great news, even in the midst of frustration at not knowing what is going on.

 

[gooseberry]

I would ask about myasthenia gravis which can have bulbar type issues and multiple sclerosis. You aee not indicating things which make me thijk als is the cause. I suggest you rule out mg and ms. Then see your neuro or gp to figure out what is your differential, what is on the table, and what is eliminared diagnosis wise.

I would kindly suggest this forum is not the right place for you.

 

[Atsugi]

Glopez, thanks for asking. 1) Not ALS. 2) No idea what else. 3) We're not doctors and can't physically examine you. 4) If you've got medical doctors at your disposal, it's really kinda sorta backward to ask the Internet to second guess real medical doctors.