Odd

[Frosty123]

My mom (mother of 10, all around amazing woman) was diagnosed August 10, 1986 and died at 68 years old 3 months later after progressing rapidly from her initial symptom which was a frozen shoulder. I was her daytime caregiver assisted by my nine brothers and sisters, various other family members, a multitude of friends and finally our local hospice. At the time I was 28 and expecting our first child. I was so impressed with the support and care received from hospice that I promised myself I would, when able I would volunteer for this wonderful program which I did 6 years later. Now, 28 years later I am the Chaplain for our local hospice.

5 months ago I started having problems with my left shoulder, 2 years prior it was my right and since that eventually healed I anticipated a similar outcome. However, the pain became unbearable and I finally went to my GP....several visits later I mentioned that I was having numbness in my right leg, no tingling just numb and he sent me for a cervical mri. Next thing I know GP calls and tells me he has set me up with a neuro the next day. Lesions were visible on spine mri and they are suspicious of MS.

Off I go, full neuro (about an hour) and he prescribed lumbar puncture, more mri, brain and rest of the spine, blood work up and that I need a consult with ortho.

At this point I told him about my mom's als and his response was "based on what you are telling me I don't think your mom had als" what the heck could that mean? Is there something else out there that has all the same symptoms of als but progresses as quickly as hers did?

I should add that my dad passed 4 weeks after my moms diagnosis and my siblings and I were certain that had a lot to do with how quickly she went through the stages of this horrific disease, thoughts?

 

[Atsugi]

Thanks for writing. You present a puzzle, which I like to solve.
Frozen shoulder has nothing to do with ALS.
Shoulder pain problems and leg numbness are not signs of ALS.
You haven’t presented any pieces of an ALS puzzle.

There are 162 neuromuscular diseases. I suggest you continue work with your doctors to find out what the problem is.

 

[affected]

hi Frosty,

you didn't tell us what your mother's symptoms were, except a frozen shoulder. Frozen shoulder is not an ALS symptom, it is normally a result of later stage ALS (result of muscle wastage).

 

[Frosty123]

My moms symptom started with was at first diagnosed as a frozen shoulder, 4 weeks later she needed help getting out of the chair, back to the neuro at Northwestern in Chicago, diagnosis of Als, next week walker, following week wheelchair, four weeks later no arm, leg movement and was whispering, thickened liquids (no peg), the following week she died. Surrounded by her children and grandchildren. I was not asking about my symptoms (they are testing for MS because of spinal lesion, not because of my frozen shoulder).

My question is why would the neuro doc think mom wasn't ALS? Yes, it was terribly quick but her symptoms did follow the pattern of the disease process.

I wish this type of board had been available for us when my mom was struggling, we pretty much felt like we were always playing "catch up" in trying to give her the best care. That is when hospice came in and helped so much.

 

[skipper66]

There are alot of things that resemble it quite a bit . They first thought MS and then they were sure that he had Mystanis Gravis (sp?). Sorry, you are having problems. It is great that you are involved in Hospice and want to help other people. I am having personal problems right now but I hoping to eventually get some training and to be a volunteer for them. God bless you, Kim

 

[lgelb]

Frosty, I'm sorry for your loss and appreciative of your vocation. I think some posters may be conflating frozen shoulder (I had it, associated w/ 50+, sometimes thyroid dysfunction/diabetes) that is present w/ normal muscle [and is more likely in the 2nd shoulder if occurred in the first]; and the frozen and/or subluxated shoulder joints secondary to loss of muscle, most common w/ the flail arm subtype of ALS (as in my husband's case) but possible in any type.

In the first case, you have a lot of pain and stiffness. I had months of PT and some pts have to have surgery. In the second, of course, there is nothing to be done but continuing ROM exercise/stretching/massage everywhere that it doesn't cause more harm, and, of course, supporting the shoulder in any arm movement.

Frosty, you haven't received enough info to guess what the doc is thinking, but certainly follow it out. MS is certainly more treatable than ALS. You can also have more than one neuromuscular issue. And, of course, since numbness in lower limbs can relate to the spine, you want to have a definitive etiology.

Let us know what the next round of testing reveals.