Mom is going through testing, symptoms, scared

[Brenna86]

Hi, my mom has been having a severe decline in health the past 6 months. she just saw the bone and muscle doctor with nothing and has now gone to the nurologist. she tested negative for MS but theyre now testing for ALS. Im 24 and trying to finish college and work and get my first place. Im just feeling very confused and scared and concerened.

It started off with one of her toes doing this weird bending under thing that would trip her all the time. then slowly progressed. Shes at a point where she cant lift her arms above her shoulders, and needs help getting out of bed and moving. Her legs and feet seem to tense and cross a bit and feel very tight, after getting her into a sitting position she can eventually get them to be flat and we can get her up. But over 6 months shes gone from being able to walk to using a walker and having help everywhere she goes.

Shes lost a great deal of mobility in her hands as well. She had spinal surgery about 5 years ago but that area was ruled out as being a problem. She does slur words when shes tired but i dont know if its due to her medications (as it has been happening for awhile on some of the ones she takes) or something else. Also many things now completley exhaust her. Ive been reading about ALS and some of the support things, some of this sounds very familiar and its frightening. But shes not in any pain at all which is good, but she falls down all the time which is very bad. I also know shes struggling with serious depression and taking medication for it.

Im just reaching out and seeing what people have to say. Any thoughts and prayers/energies would be appreciated.


Also, any ideas on what i can suggest for her to do? Shes very bored being in bed almost all of the time watching tv.
Thank you!

 

[hld_out]

hi I'm sorry to hear that your mum has MND. I'm 25 years old and was diagnosed with motor neuron disease when I was only 21. I know that you are in the young must be hard to see your mum goes through this but always remember the good times and just because she is sick doesn't mean there aren't more good times to come. I am pretty much the same stage as your mother, it's hard to cope with and it's very life changing. My voice has not gone yet but I cannot walk lift my arms or do anything for myself. Your mother must be going through so much right now so just be patient and be there for her.I also take depression tablets and they seem to work for me. as for your mother being bored there are so many things you can do without physically moving example the program I am using out to write to you all I have to do is speaking to the microphone and my words appear on the computer screen we are so lucky we have all this technology and you will be surprised… All you have to do is Google it. I hope your mother gets better and will also send my prayers be strong for your mother and your family… And make the most of it

 

[laurel]

I am sorry for what your mom is going through Brenna. The symptoms you describe are a bit vague so it could be many disorders. The tenseness in the legs and toes does sound a bit like a disease called Charcot Marie Tooth, but like I say it could be many things. I hope it is not ALS. Have they done EMG, nerve conduction tests, lumbar puncture etc? I will say prayers for her, and let us know how things go with the testing. Also, others here will likely have some other opinions. Take care.
Laurel