u/Thick-Grape-8537

Please delete if not allowed. My husband was diagnosed with ALS based off an EMG in November. They did the elimination tests and came back to confirm the diagnosis in December.

We then went to an ALS clinic where the doctor stated he was not sure it was ALS and wanted to run through genetic testing and do a repeat EMG before confirming the diagnosis. After 7 months of testing, ruling out all genetic neuropathies, muscular dystrophy’s and axonopathy, the doctor told us that he could state within a 95-96% accuracy that it is ALS or some form of MND.

Today we went in for our evaluation for the Coya 302 trial and a third (new doctor at the same clinic) is now saying she does not feel certain he has ALS (after doing a 5 min exam and reviewing his test results) and wants to perform a muscle biopsy. He previously had a spinal tap and bloodwork on his CK levels in lieu of the biopsy. I’m feeling a little lost since he’s now been diagnosed twice with ALS, but each time we see a new doctor they’re asking for further testing (I know this is a good thing and we of course want to test for any/all possibilities). They said don’t get false hope because he still may have a form of MND that’s terminal but just not “traditional” ALS.

They said once the muscle biopsy is complete we should take everything and go to Mayo Clinic. Just wondering if anyone else was experiencing this back and forth on diagnosis. Did you have to get a 3rd or 4th opinion for your diagnosis?

I know it’s hard to diagnose and there is no definitive test, I just can’t tell if we’re just set up with bad doctors/having a particularly bad experience?

Hi there. My husband was diagnosed with ALS recently and he is still early stages. He has not lost any mobility really except for not being able to lift his left arm past his shoulder. He generally says he’s in a lot of pain related to muscle stiffness, some cramping (Charlie horses in his calves), and I think in general because his muscles have atrophied he is just more sore then normal. He tried naproxen and gabapentin which didn’t work well. We recently started baclofen which seems to be helping with stiffness.

I know everyone’s experience is different but are there any medications or therapies that have helped manage your pain that we should ask our doctor about? Our goal is to keep him moving and working as long as he can so hoping to find some meds to make his days a little easier.

We are in the Chicagoland area and my husband was officially diagnosed about 7 months ago. We have been going to Northwestern to the ALS clinic but I haven’t felt like the doctors have been very proactive or shared much information with us.

So far, I have had to ask for everything we have had access to. They didn’t proactively prescribe him medication for slowing ALS progression (riluzole/radicava (I had to request it), haven’t prescribed anything to treat his pain (muscle stiffness/weakness), didn’t advise us on how the clinic works (when to see which person and for what reason), so I feel like everything we’ve had done has been specific things I’ve requested. There have been a few other things that I’ve felt like I have had to advocate for vs them providing proactively and it’s been frustrating so far. It feels like they’re not very interested in treating his pain/symptoms and I would think being newly diagnosed they would want to explain things a bit?

I’m wondering if this is just how it goes or we should think about taking him to a different clinic? Has anyone had similar experiences or is this expected.

My husband was recently diagnosed and is still early in his ALS journey (still walking, talking and has full use of his arms/legs). We were looking at purchasing a new mattress before the diagnosis, but now I’m curious what to buy to adjust with his needs over time.

My goal was to keep us in the same bed as long as possible, I know eventually he will need his own bed/hospital bed. I was looking into sleep number beds for adjustable firmness over time but they’re very expensive. Are there any beds recommended for couples where one person has ALS?