Please can I have some advice?

Status
Not open for further replies.

Bluezoo22

New member
Joined
Apr 11, 2023
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Hello,

I just wanted to post about my loved one who is 50. In September of last year he noticed some twitching in his bicep muscle and a feeling that something in his body didn’t feel right when walking. He has had several blood tests indicating high CK levels which reduced prior to Christmas. From October onwards one arm was affected in that he lost strength in this and this has now progressed to loss of movement in both arms and hands with the current situation being that he cannot hold a plate (his hands just drop down). He reports one arm weaker than the other however mobility in both reduced with him being unable to lift these above elbow level. This deterioration has happened since Christmas along with balance being affected and a number of falls. Physically, his shoulder muscle on one side is smaller than the other (both sides overall reduced in size) and I am noticing that he has lost weight/muscles in his arms. He is very fatigued and speaks at times slower than usual. Over the past two nights he has woken with pain in his shoulder which is a new symptom-previously although he did have restricted movement in his arms this did not cause a great deal of pain. He has lost the majority of movement in one finger which hangs down when his hands are straight.

We have been to see a muscular skeletal specialist who completed an MRI of the spine which was normal and the next step is seeing a neurologist. I have googled and read this site and can see that some symptoms are suggestive of ALS, however are also mentioned in other diagnoses. The worrying part for me is the fast progression of this and was just hoping for any experiences/views of others on whether this could be worth mentioning at the neurology appointment? I am also aware that other symptoms he has had such as sweating/fatigue could be due to the anxiety he is currently experiencing.

Thanks in advance for any replies- I am sure I have probably missed things out but can answer any questions.
 
Hi Blue, I can certainly see why you are concerned. ALS (possibly the flail arm subtype) is one possibility, as you say, but there are others. Until he has seen the specialist, my main focus would be to protect his shoulder/elbow/wrist/finger joints esp. when he sleeps, and this can also help the pain In other words, you don't want a lot of movement that pulls the limb or appendage out from the joint. Little travel pillows and pieces of foam can stabilize those and he should not reach for or hold things in a way that strains the joint itself.

I would bring a one-page summary along with his results to the appointment (when is that?), detailing what function/appearance has changed and when.
 
Thanks so much for your response. I will certainly suggest this to him. His initial appointment with neurology is next week so I am going to sit down with him and write a timeline as you have suggested. What things can we expect from this appointment if you have any experience?
 
This is a regular neurologist not at an mnd center , correct? I would expect a history and physical exam plus blood test and ordering of an emg and perhaps a brain mri. Without an emg I doubt you would get a definite diagnosis.
they may discuss going to an mnd center if his exam is highly suspicious. This is something you want to do if it looks like mnd.

the nhs is as you know too well in a mess right now. You may have to be a squeaky wheel. I would ask who you can contact with questions and concerns and for anything that needs scheduling how quickly it should be done.
 
We attended the appointment today and received a diagnosis of ALS which was a huge shock. Although I had suspicions I assumed that there would be more tests however the neurologist was definitive after a physical exam. There are lots of questions I should have asked but didn’t and guess now is a waiting game- we were informed that the nursing team would make contact. Thanks so much for your replies to this post Nikki J.
 
I am very sorry. As Nikki says, an EMG (and often, an MRI, as he has had) is part of the internationally agreed diagnostic process. I can understand if they did not want to provide false hope, but would certainly insist on an EMG and a second opinion if this is not a specialized center, since some of the disorders that the EMG helps rule out are much more treatable.
 
Last edited:
Thanks for your response. He is devastated as am I and trying to hold it together for our children. I have asked him to seek a second opinion or further exploration so we know what we are dealing with but he said that he cannot listen to that news again. We feel in limbo as don’t know the next steps. Additional symptoms I was unaware of until yesterday are constant twitching in his arm, legs chest and back. I will begin to write down my questions for the next professional I see- are there any suggestions of what I need to be exploring or need to know?
 
This sticky may help.

Centers on this list would be able to do the EMG and review the history, do their own exam. They will generally have a social worker and/or psychologist that might be able to help with a softer landing, if the diagnosis stands.

I don't understand how/why he would have been diagnosed without an EMG, but I would say to him that even if there were only a 5% chance of finding something more treatable, surely your children deserve that chance. I would also point out that even if he is indeed affected, affiliating with a leading center will afford him more opportunities to avail himself of assistive technology and newer medication, providing potentially more quality time as a family.

At this point, you don't know how much you don't know, because it's not clear how valid the opinion you received can be. The only thing worse than the diagnosis is not knowing if it's real. I'd give him a few days and then start with that observation.

The day my husband was diagnosed was much worse than the day he died, even though I had suspicions and I think he did, too. This sounds odd, but you have had that day. If you have to hear it again, which we did at the second opinion, try not to think of it as a nail in the coffin (we all die), but a starting line for the rest of his life (we do not all live as fully).
 
Status
Not open for further replies.
Back
Top