Concerned about husband

[RandiLynne]

Hello, and thank you for taking your time to help those of us fearing this disease, whether for ourselves or a loved one. I will try to keep this brief as possible. My husband is 56 years old and started experiencing fasciculations in his left arm, approximately 5-6 months ago, now on the right as well but not as pronounced. He has marked weakness in his left hand and is losing the ability to grasp/hold items such as a fork, turn a door knob, lock/unlock a door know, hold toothbrush, button shirt to name a few things he is having difficulty doing. There appears to be less coordination on the left side as well.

He’s tired all the time; sleeps off and on throughout the weekends and passes out in the chair shortly after work. He’s going to a chiropractor hoping maybe it’s a pinched nerve, but so far it’s not making any difference. The chiro has recommended he get an MRI and/or see a neurologist. He mentioned to me tonight that he is having numbness in his left leg and feels like his coordination is off. Tonight is also the first time he has admitted his ability to work is becoming effected. I don’t know if mood changes are part of ALS, but he has mood swings and gets really down, as well as his coping skills are becoming impaired.

I will also mention that he was a Marine at Camp Lejune during a period when the drinking water was contaminated with PCEs. There has been an ongoing study since the mid to late 90s, and it has been determined that there are some severe health issues as a result. While ALS has not been named as one of the recognized illnesses, neurological disorders have. There are attorneys working to get ALS included due to there being an increase in ALS cases among those exposed. Parkinson’s is a recognized disease in the contamination study, and we will be looking into that as well. Any insight would be much appreciated.

 

[Nikki J]

He does need to see a medical doctor and get evaluated and yes his symptoms are concerning though without a proper medical evaluation and testing there are a lot of things on the table. While it sounds like he needs a neurologist I would call your pcp who hopefully can see him soon. The pcp may order some preliminary tests and it is usually easier to get to a neurologist when the pcp is referring. Plus your pcp should know who is good in your area

this is very stressful for both of you of course but the sooner you have answers the better. Should this turn out to be ALS as you probably know it is considered 100% service connected with significant support from the VA as long as he had at least 90 days active duty and a not bad discharge

 

[RandiLynne]

Thank you for the quick response Nikki. I’m wondering if an MRI is helpful when ruling out ALS, or if getting right to neurology would make the most sense. He was in the marines for 4 years with honorable discharge, so getting started with the VA will be at the top of the to do’s as well.

 

[Nikki J]

mris are usually part of the diagnostic process for als. As I said I would see the pcp who should be able to facilitate things rather than attempting to schedule without an MD recommendation

 

[Clearwater AL]

RandiLynne. when your husband begins to pursue possible VA benefits I'd suggest he
contact his local PVA representative. They are more ALS directed and will process
his claim quicker. They will tell what he needs and from who. It does not have to be
A VA Neurologists' confirmation and it may happen sooner with a civilian neuro.

(Paralyzed Veterans of America)

 

[lgelb]

Agree; start with the PCP. And there are still possibilities besides ALS.

 

[RandiLynne]

PCP sent us to ortho specialist to check for musculoskeletal possibilities. While he does have some arthritis and degeneration, ortho said what he is seeing is not musculoskeletal in origin but rather neuromuscular. He observed marked atrophy in left forearm and biceps, as well as definite clonus. There is also weakness, lack of coordination, and dexterity in left hand. His ROM is still relatively good. His gait is abnormal and left leg showing weakness and spasticity.

After his examination he noted he started having cramping in his left biceps and left calf. My husband said this is bad, isn’t it, and Ortho said I can’t tell you it’s good, but it is serious, and could be a number of things, i.e. MS, MMN, Louie body dementia, and yes, possibly ALS. He is getting him scheduled for EMG next week. He said he will do everything he can to get us an answer as quickly as possible so he can get signed up with the VA, as this could be related to his time at Camp Lejune.

Can anyone tell us, does that take a definite neurologic/neuromuscular diagnosis before he can start that process? He is concerned that he won’t be able to work much longer due to his line of work, and the effect this is having on his ability to do what he does.

 

[Nikki J]

I think you are going to need more than the orthopod saying he has symptoms that are neuromuscular If that is what you are asking. The emg should give you direction if not absolute answers

 

[RandiLynne]

Good morning. We bypassed our local healthcare due to long delay in getting testing done; we have been at Mayo Clinic in Rochester for the last week and a half. Yesterday was our last appointment with neuromuscular specialist for discussion about findings. He said all mimickers have been eliminated through bloodwork to look for autoimmune disease, which are all negative; MRI of brain and cervical spine are all negative for possible causes. EMG shows upper motor neuron disease process for which they are giving a diagnosis of PLS or early ALS. We are to return in 6 months to repeat EMG but, in the meantime, they are going to start treatment with Riluzole and referral to ALS clinic back home.

He is being released back to work with limitations and, due to the physical demands of being an HVAC service tech, he is concerned that he could lose his job. I have reached out to the PVA chapter in Missouri to get started with VA. Any advice or guidance at this point would be much appreciated.

 

[MJT]

RandiLynne, I am very sorry to hear your husband has an MND. I'm glad you went to the Mayo Clinic, though.

First, take all the time you need to process the diagnosis. Then I'd look for a therapist if you don't have one. So many of us here have benefitted from having a therapist and starting an antidepressant if needed.

Get a healthcare power of attorney and a will if you don't have them.

ALS patients automatically qualify for Medicare, so consider older friends or family who can help you navigate that system. We found it complicated.

Caregivers on this site support one another. Continue to ask anything or share your experience.

 

[RandiLynne]

Thank you MJT. We feel very overwhelmed thinking about the future but know that we need to get our fairs in order sooner rather than later. He is a veteran, and we have reached out to the local PVA chapter to see what he needs to do to get started with the VA.

He is really angry right now, and I don’t know what to say or do except just be here for him.