Just diagnosed and feeling overwhelmed with questions

[Rileyb]

Hi all - I’m seeking advice, guidance, pity, anything really. Very newly diagnosed- last Thursday. I’d started noticing coordination and balance issues, as well as frequently dropping things during the late summer and at the time requested an MRI to rule out pituitary gland issues or MS because along with those symptoms. I also was having extreme sweatiness/what I was identifying as a lack of ability to regulate my body temp (+dizziness&vision issues which I later found out were side affects of an anxiety medication I’d newly been taking.) MRI came back normal and the provider I was seeing at the time left it at that -attributing many of my symptoms to anxiety. I was comforted to know it wasn’t MS, knowing that would be the most likely culprit considering that I’m only 28 and female ..I think I kind of was hoping it was all in my head or that it would be a transient thing…though symptoms did continue.

In Nov. I got a new primary care doctor who noticed I have hyperflexia and clonus in knees and ankles. She was quick to say it’s probably a B12 deficiency as I’m a vegetarian. Bloodwork came back normal B12 and thyroid which is when she then ordered an EMG and I followed up with results from a neurologist last week who gave this diagnosis - since I already had MRI which ruled out MS diagnosis they tested me for Lyme disease (neg) and gave me diagnosis of ALS based on that, the presence of slurred speech, insomnia, hyperhidrosis, and a physical examination as well as the nerve degeneration in my left arm and left leg that the EMG revealed. I do agree with the diagnosis after reading about it extensively for weeks based on my symptoms and the overall weakness I feel in my body.

My symptoms have been getting worse by the day. Since around Xmas my symptoms increased from just balance/coordination and some fine motor skill trouble to having trouble, lack of sensation in my left foot, loss of Babiski reflex etc as well as weakness, atrophy and struggling to guide my left hand/arm. I’m also having muscle twitches and cramping all over my body, but primarily legs and slurring my speech slightly on my s’s and feeling a pain/cramping sensation in my throat. I’d been having jaw pain and cramping that had been attributed to TMJ as I grind my teeth.

I have only gotten the diagnosis from a neurologist not an ALS specialist and I’m reading that I should have more than one diagnosis? Based on the specificness of my symptoms and the test results I don’t think there’s much else it could be - but I do tend to reach out to the ALS clinic in my state. I’m shocked and devastated at this diagnosis- I’m not an athlete, idk why I keep grappling at trying to figure out a why or a reason because I know there isn’t one really.

At this point though truly my biggest problem/complaint, and honestly the direct reason why I’m posting this right now, is I’ve had HORRIBLE insomnia since about the late summer, around the time I noticed balance and coordination issues. Since the week or so of Dec. though it has become unbearable and even with my anxiety med, CBD, melatonin, Valerian root I CAN NOT SLEEP. What do you all do for this? It feels as if it’s a phenomenon in which as soon as my body starts to finally relax into sleep my muscles tense up and start twitching and it goes all night long..I can never get comfortable. The more I actively feel and am having discomfort from my symptoms the more I start to fixate on what my death from this disease will feel like…which of course activates my nervous system.

I have not slept at all the past 4 nights. It’s already having extremely negative affects on my mental health and I’m in the earliest stages of having to grapple with this and just thinking about how to tell my loved ones and those I work for - I have two jobs as a caretaker for an adult with Down Syndrome who adores me as well as a nanny for a 1.5 year old. The thought of having to share this with their families feels insurmountable. I’m single currently but have always wanted to have children. Knowing I won’t ever have that that I’ve dreamed of since I was a child is devastating to me beyond what I feel I have accurate words for.

But as much as that rips me apart, what I’m suffering with more and what I want more than anything in the world is to sleep! Have other struggled with this? Any recommendations? I have had bouts of insomnia on and off since I was about 20 - after going through a major trauma. Never like this however- over the summer I identified that it had hit a ‘next level’ - and now that I’m learning a connection between ALS and insomnia and I’m thinking that was a symptom of ALS from the start but I wasn’t having the muscle twitching then and with that added symptom it’s making the idea of sleep feel truly impossible and like a thing of the past.

I also have had high blood pressure readings since Nov. and feel like I can feel my blood pressure being high and it feels like it just won’t lower enough for me to sleep or something? (Did anyone else have blood pressure in the early stage? Because I know low blood pressure can be an issue in later stages right?) Lack of sleep can be so detrimental to the body and I’m so concerned with how I’m going to cope if I’m only 4 days into this diagnosis, only told my Mom and sister, and I already feel I’m going crazy from sleep deprivation. Barely feel like I have the energy or brain power to process all the hundreds of other things I need to preparing for - like selling my house, likely moving in with my mom and figuring out long term care for my 9 year dog who I’ve had since he was a puppy (my mom is not a dog person.) ANY recommendations, thoughts, would be greatly appreciated!

 

[lgelb]

Hi, Riley, welcome while sorry you are here. Yes, we always recommend a second opinion and I would get it ASAP as sometimes there is another treatable condition at play. Be sure to specify when making the appointment that you've been diagnosed and need a second opinion.

Re hypertension, yes, it can play a role in settling down for sleep but you are also on a boatload of meds that can chill you down so far your body fights it, too, since your lungs do want to expand and keep you alive, etc. So I would consider tapering. And melatonin, for example, can be counterproductive to the extent that your own body can stop making its own.

But for now, if you have or can buy or borrow one, a wearable showing your resting heart rate, breathing rate, sats, sleep stages (eventually, you will at least doze off), etc. would be valuable data. But I would also ask your PCP, still your best resource for general health, about a sleep study, which only takes a finger sensor at home these days for a first pass.

I'd also see your PCP about starting a pill to reduce your BP if it is really running high, because that amps everything up and makes it harder to deal, besides stressing out your body. And of course we all need sleep!

Re ruminating about how your death will be, you and your mom can talk about this, but most PALS have the death they want, without undue suffering, pain, or choking.

Please make sure you're up on the vaxx you need -- Covid and flu. Not a good time to get sick.

I would make sure your furnace filters are clean, your room is a good temp, if you're cold, consider a low voltage heated mattress pad, run a fan if white noise helps, a humidifier if you need one, discontinue any scents well before bed, and make sure all is good with your dog. Dk what you've tried, but I'd swear off screens before bed unless music or reading helps.

Speaking of your dog...if you do end up with your mom, I would try to place him with a friend or relative so you can have visiting rights at the beginning, and home visits even outdoors, when travel may be more difficult. But I wouldn't make any decision about selling your house -- in-home care is often possible -- while you're as fried as you are.

I do have to say, if your issues are worsening by the day, that normally leads us either to suspect a rapidly-progressing form, or an incorrect diagnosis. You can't do much about the first one, but I would get to work on that second opinion. Likely there will still be some kind of lead time, but you can ask to be on the cancellation list, and meanwhile process a little bit more, maybe share with a friend or two, but maybe not your clients until you are sure.

Best,
Laurie

 

[rmt]

Sorry to welcome you here. I recommend getting a second opinion from an ALS center before you start making major life changes. Were you started on ALS medications?

I also recommend posting your EMG results here (with your identifying info removed). There are people on this forum that can give you feedback about what the EMG results mean (not me, but there are some very knowledgeable people here!).

 

[Loulou22]

Hello Riley, while you are younger than me (diagnosed at 41), your story sounds so familiar - in retrospect I had other symptoms I can now attribute to MND, I presented to my GP with balance/cordination issues (felt like I was always veering to the left!) and general weakness and was checked for MS (my mum had ‘benign’ MS). When MRI ruled that out we were sure it was B12 as I am also vegetarian. Wrong again! I googled / read heaps and knew it couldn’t be anything else. It’s the most awful realisation.
Regarding sleep, I have also suffered from anxiety for a lot of my adult life and medicated for a good portion of the time. Believe it or not some anxiety medication can contribute to insomnia - Lexapro, which I take, being one of them. After diagnosis a psychiatrist recommended I supplement it with another called Mirtazapine to aid my sleep and appetite (anxiety=zero appetite/nausea and vomiting for me also) and it worked wonders.
I have put on a stack of weight but my specialists are happy with this, even if I am not! The best thing about it is the lower the dose, the more sedative it is.

I’ve also found guided meditation to be helpful - Yogi Bryan on Spotify or his app has some good sleep meditations I found easy to listen to. He also has some sweary ones, be warned if not your jam. But might be worth searching for what might work for you. The Headspace app has heaps of sleep stories and meditations also. If I have those intrusive thoughts I can now recognise this and usually refocus on the guides voice or sleep sounds.

Also I know how hard it is, but being soemwhat active during the day, within your limits, may help. Even light activity like stretching I find helps me.

I hope you get some restful sleep soon.