Comorbidity and its impact on motor neuron diseases

[KimT]

I know I've posted this before, but I thought it was worth a new topic for PALS/CALS recently diagnosed.

A comorbidity is having more than one disease at the same time. I found out a year ago I have Ehlers-Danlos Syndrome. For years and years, doctors dismissed my symptoms or wrote it off to fibromyalgia. Many people with EDS also have fibromyalgia, but it is a small piece of the other conditions and symptoms associated with EDS.

I'm a very slow progressing PALS. So slow, I've questioned my diagnosis and even operated in a state of denial, the main reason being that I've been in a lot of pain since 2016 and pain isn't associated with ALS, especially in the early stages.

Last year, a visit with my ALS doctor at Mayo Clinic uncovered some "symptoms" he wasn't comfortable with not further exploring. Another Neurologist at University of Florida had mentioned, and it was in my notes, that I was very flexible and he said that I might want to get checked out for EDS. I didn't follow up immediately, but it was on my radar. Long story short, Mayo's EDS clinic diagnosed me with hEDS which comes with so many issues that I had been experiencing for years such as migraines, TMJ disorder, shoulder popping out of joint, mitral valve prolapse, POTS, etc. She examining doctor said I probably also had fibromyalgia which he said he sees in over half hEDS patients. They went on to do more genetic testing for vascular EDS and found a benign brain tumor which they're not worried about. They did say my brain looked healthy. I tested positive for MCAS which is a disorder of my mast cells and it means that I have to be careful with histamine foods.

So, with all that information, I continued to move forward with some new limitations and cautions.

Through my own fault, I got skin cancer. Too many hours in the pool with no sunscreen. After a consultation with Mayo, they recommended superficial radiation rather than MOHS since with hEDS, my skin is very thin and the cancer is on my nose. It would most likely require a plastic surgeon and an overnight hospital stay, so I elected the targeted superficial radiation. I've had eight treatments with two to go. My nose is red, it bleeds, and it's extremely uncomfortable, but I'll get through it.

The reason that I bring all this up is to encourage every newly diagnosed PALS to take good care of your general health. Get dental work done very early. I had two crowns done in 2018 that I'm not sure I could tolerate now. I had stomach issues so I got scoped a few years ago. Sometimes you live longer than the doctors predict or "mention" during the first appointment after your diagnosis. And the small procedures will become harder as you progress.

I suppose the same thing happens to everyone as they age. You get more "stuff" and it's best to address it as early as possible. Last year I got a mammogram and a bone density test. It will likely be the last ones I get but I'm glad I got them.

So, when you're out, wear sunscreen and a hat....especially if you live in a sunny, warm climate.

 

[Serenity]

Thank you for such sound advice Kim. You are an incredibly strong woman.

 

[KenM]

I fully agree with Kim's advice. I too turned out to be a very slow progressor and, after initially skipping trips to the dermatologist and dentist because I did not think it mattered anymore, eventually realized I might be living longer than I thought. A belated trip to the dermatologist caught and treated an early melanoma. Please do take care of your general health as best you can. Thanks Kim for raising this issue.

 

[Susan12]

Kim, I'm very impressed with your ability to deal with everything. I'm a physician and have cared for a number of patients with h-eds, mcas, dysautonomia and all the accompanying systemic complications and symptoms. It's a relief to get a diagnosis that helps to put that together and a plan to manage the issues.

 

[KimT]

The other thing that comes to mind is that my eye doctor (who is now retired) was willing to do lens implants even though I didn't have cataracts. If you are a PALS and ever intend to use eye gaze equipment, or if you just want to see better, I would recommend the Panoptix lenses. For those of you who remember Karen Basin, she was a PALS and a medical doctor who also was a moderator on this forum. Karen got lens replacements shortly after she was diagnosed.

Karen recommended Panoptix lenses and I had them done right before Covid hit. I can now see 20/20 both up close and distance. I've not had to wear glasses since the simple outpatient procedure. They aren't fully covered by Medicare, but it was money well spent. I just thought I'd bring it up since many of you, both PALS and CALS are nearing the cataract age.

PALS, try to keep your hands and feet manicured. If you are unable to go out, have someone do them at home. If you can still get around, treat yourself to a mani/pedi and definitely a massage if it's in your budget.