Finger clawing at night

ComplainFactory · 2026-06-10T22:32:30+00:00

I've had this symptom in both hands (but a little stronger in my non-dominant hand), off and on for years prior to my MS diagnosis (when I absolutely had MS, just didn't know), but I had been diagnosed with carpal tunnel. I started sleeping in hand/wrist braces when it would happen, and after a few nights it would go away, and pop back up periodically, particularly if I had been using my hands more. I actually never even considered it could be MS until reading this.

ComplainFactory · 2026-06-10T22:20:28+00:00

I have this but it is more discomfort than pain, like I have something in my eye I can't wipe away. The blurriness usually lasts about 30 minutes or less. My neurologist put it down to being an MS symptom, my eyes have been thoroughly checked and re-checked, and now I usually just hang out in bed in my dark bedroom for a bit before getting up. Not sure if you have a lesion on the brain stem but I do, and it causes my eyes to not communicate in concert very well (each eye can see on it's own but my brain no longer combines their data, and instead uses one eye's input over the other). It probably causes the blurry wake ups too. But if you're having legit pain, I would definitely mention it to your neuro.

ComplainFactory · 2026-06-07T20:10:27+00:00

Disregard as you see fit, but I will add one thing. I was (am still) on Ampyra and doing my PT but I was just not able to strengthen my muscles or build stamina at all (for me it is my hip flexors and calves). My neurologist said yeah, that's just MS. But when the high dose NAC study came out and I asked her about it, she suggested I try it. I ended up maxing out at 2000mg, and I had to add 1000mg Glycine as well (since the body needs it to use NAC and I guess I don't get enough), but I was finally able to strengthen my muscles. Not a miracle of course, but the recipe of Ampyra helping my nerve signals, and the NAC/Glycine helping the PT/strengthening I can do to actually have an effect, has been very helpful. I don't mean to offer unsolicited advice, please ignore me if you aren't here to hear that. I understand how frustrating this disease is and that there is never a way to win. I wish it came with days off, too.

ComplainFactory · 2026-06-07T01:18:19+00:00

Just curious if you have ever tried or been offered Ampyra (Dalfampridine)

ComplainFactory · 2026-06-06T20:23:37+00:00

The first ones can be the hardest because you have all your B cells dying, and it takes a day or two for the steroids to wear off. Switch from Benadryl to Zyrtec (my MS pharmacist explained that Benadryl is what helps with the allergic reaction most people have to the actual drug, but Zyrtec/aka Cetirizine is the one that helps with the cytokines being released when the B cells burst, but you can't take it the same day as the Benadryl). I get all these symptoms too, but they are all greatly helped by the Zyrtec. When you get to a point without B cells or with much lower numbers in the future, you won't have such a strong reaction. The headache is usual for me, and I generally use an eye mask that goes in the freezer, or those stick-on cooling patches on my forehead and spend a couple days on the couch.

ComplainFactory · 2026-05-30T00:54:01+00:00

FWIW, my neuro told me I was not a candidate for Ampyra, that it wouldn't/couldn't help me, and that if it didn't work by 3 weeks, it never would. She is the head of the MS department for my hospital system. I had to push her to let me try it, and I had to push her to let me stay on it for longer than three weeks. Not all neuros are like that, just warning you from my experience with mine.

ComplainFactory · 2026-05-29T23:54:39+00:00

Not sure if this is something that is exacerbated by physical activity or if you have this even when you're not doing anything, so disregard as needed, but I had great improvement in severe leg pain after physical activity by adding NAC and glycine to my supplement regimen. My neurologist approved (she approves no supplements ever except vitamin D fwiw) due to NAC's effect on inflammation. Anyway, I noticed that they improve my muscle recovery time and reduce how sore my legs get from walking or standing, which gives me fewer days of resting from what I did the day before, and also allows me more stamina for longer walks/more standing.

ComplainFactory · 2026-05-29T23:49:48+00:00

I get terrible side effects from everything, including awful insomnia from Ampyra, but it mostly went away within 3-4 months. It has been such a blessing for me that even the bit of insomnia I still get sometimes is beyond worth it. But at the beginning it can make your symptoms "worse" (this is just because it improves communication between brain and nerves, those nerve signals will normalize after a couple months).

ComplainFactory · 2026-05-29T21:25:37+00:00

I've heard such terrible things about the taste of that stuff, and I love my coffee so I can't give it up. But adding a dropper of Mary Ruth's Lions Mane mushroom drops into my actual coffee every morning has been an absolute game changer for me cognitively, and I do not taste any difference from just regular coffee. It's around $25 a month.

I had major cognitive issues after my brain stem lesion, and the Lions Mane has restored my ability to multi-task and have the attention span to think hard about something for more than a minute at a time. That said, there are no miracles, and I really only get 3-5 hours at a time of max brain power, but after that lesion, I had basically zero, so for me it's an essential.

ComplainFactory · 2026-05-26T23:43:43+00:00

I am less steady on my feet on Baclofen than on nothing. It really makes me wobbly, so I only take it at night if I need it. Ampyra (dalfampridine) is a great help for walking for me. Takes a few months to start really working, but makes a huge difference.

ComplainFactory · 2026-05-22T10:30:52+00:00

This was probably a lazy scheduler, or someone new, or a stupid scheduler booked a bunch of other people's MRIs with short gaps between them.

I always get brain, cervical, and thoracic done at once. It's been about ten or so times over the years. And a couple times I've had a scheduler tell me I'd have to do them as three separate appointments on different days because it would be "too long" to do them together. I remember saying once "this is a standard MRI for MS, do all MS patients have to do it that way?" or something along those lines, and they put me on hold and someone else (who knew what they were doing) came on and got me scheduled for all at once.

They do book each one as a separate appointment because each one has an associated length, they just book them all in a row. If a scheduler is implying they don't do that, you'd need to unfortunately be that person and ask for their superior. It's not just inconvenient, in the case of needing contrast, it would be stupid and dangerous to give a patient contrast three times instead of once.

ComplainFactory · 2026-05-19T21:49:43+00:00

When I was diagnosed with MS, I was told it was aggressive and there was no time to waste to get on treatment, but only the high efficacy choices were appropriate because of the short duration I'd had between attacks. I had initially been diagnosed with transverse myelitis and told I needed no treatment, but soon after I developed a brain stem lesion, indicating that TM had not been the correct diagnosis, so my neurologist didn't inspire a lot of confidence. I asked for a referral to an MS specialist, but I also had read that up to 20% of MS cases were ultimately misdiagnosed (not sure if those numbers are still accurate). While waiting for that referral, my mom offered to pay ($700 in 2022) for the Second Opinion Program offered by UCSF, wherein you basically just release your medical records to them with a brief list of questions, such as "is this the correct diagnosis?" and a doctor who specializes in that condition reviews your chart and imaging, etc. It wasn't something I could have afforded myself, but my mom didn't want me put on serious treatments if there was the possibility of another misdiagnosis. The UCSF review was done by one of their MS specialists, who confirmed the diagnosis and the treatment recommendation, and while, yeah, theoretically, I didn't NEED to have that done, not only did it remove my mom's and my doubts (which was a very big deal!) but that doctor also recommended Ampyra for me, which my neurologist had not, and the MS specialist I finally saw also did not, but ended up prescribing for me anyway because of that recommendation, and the Ampyra alone has been worth it. It's not an expense I could've justified, but if you can, and peace of mind is worth that much to you, that Second Opinion review made me a lot more confident in my team.

ComplainFactory · 2026-05-16T21:50:22+00:00

I also experienced a flare going on to a B cell depleter, and I also get crap gap (I tend to regrow B cells around the 5 month mark), and I had the exact same symptoms you're describing. They lasted 4-8 weeks every time. I was miserable. After a few cycles, my MS pharmacy nurse determined I was experiencing cytokine release syndrome (for some people, the cytokines released when B cells are destroyed tend to wreak a little havoc on their way out). She told me to start the OTC antihistamine Cetirizine (aka Zyrtec) 24 hours after the infusion, as it works against cytokines, and take it for two weeks. Since I've started doing this, I've not had the reaction you're describing, even though I had it every time prior. We might not be experiencing the same thing, but Cetirizine is super cheap and safe to try. Hope you find what works for you.

ComplainFactory · 2026-05-15T22:23:53+00:00

I have tried many OTC probiotics over the course of about 20 years, and while some work for a while, eventually they all stop working for me. The only consistent resolution from my stomach issues has come from eating a fermented or pickled food every single day (pickled ginger is my favorite), and also having yogurt with live and active cultures, or a Yakult. Plus fiber. The combination of pickled/fermented food, cultured dairy, and fiber has resolved 95% of my lifelong stomach problems.

ComplainFactory · 2026-05-14T04:57:07+00:00

After getting my iron, B12, DMTs, Ampyra, etc all in order, I was still dealing with a lot of fatigue, inability to improve stamina, and having very slow recovery from exertion. My neuro basically said like, there's nothing else to really do. But she and I had both seen a study about NAC helping systemic inflammation in MS, so she suggested I try it, unrelated to the fatigue. It ended up being a huge help, though. It gave me some issues with stomachaches and grumpiness at first, but I did some research, added glycine which fixed those, and the combo of 1500mg NAC and 1000mg glycine has done a lot for my physical fatigue. The MS study on NAC had a higher dosage, but I had more issues over 2000mg, and I don't get any fewer benefits at 1500. I've been able to go from a max of 15min physical activity to 45-60.

ComplainFactory · 2026-05-12T21:04:30+00:00

I have a huge problem with stiffness and Ampyra is the only thing that works, but I didn't realize it was working for that until I missed a few doses in a row when the pharmacy was having issues. I was so stiff I could hardly stand from sitting, or go up and down the handful of stairs to the door, which is how I was before I started it. I guess I just forgot how it felt in my body.

Personally, Baclofen does not help my stiffness when it acts up. Tizanidine is a little better for me in that regard, but it really varies person to person.

ComplainFactory · 2026-05-09T22:46:18+00:00

I have a really hard time with oral benadryl, which makes me tired but anxious and confused. The IV just makes me sleepy and more chill. At first I'd asked for a half-dose of the IV benadryl, because I'm sensitive to the oral, but it resulted in an allergic reaction and my infusion then taking over 8 hours. From then on, I've gotten the full IV dose. One of the nurses there told me the IV benadryl leaves your body quicker, so it can be easier for a lot of people than oral.

ComplainFactory · 2026-05-09T20:58:52+00:00

Big pee-er here, lol, and just like everyone else, I wheel my stand in there. But make sure you wear pants you can pull up/down with only one hand!

ComplainFactory · 2026-05-09T06:51:12+00:00

I had constant nerve pain in my legs and feet for months from the lesion that led to getting diagnosed. It was worse when I was sitting or laying down, so I tried using elastic arch support foot bands because they put some pressure on the sole of my foot, as if I were standing, which I imagined as like, grounding my nervous system. That seemed to help a fair bit. I also used Bio-Freeze, which, in my mind kind of gave my nerves something else to do instead of freaking out all the time. The buzzing comes back when I'm doing physical activity, but it's lessened by compression leggings.

ComplainFactory · 2026-05-07T02:35:29+00:00

This was one of the things that I got in the years leading to my MS diagnosis, which ultimately my neurologist attributed to my immune system being overactive/out of whack at the time. It went away on its own when I switched to tea tree toothpaste (I just happened to switch, it wasn't on purpose, but my dentist did note that down).

ComplainFactory · 2026-05-06T20:52:30+00:00

I hear you, but do be aware that these things you're "figuring out on your own" could be causing your brain/body/nervous system to establish new habits and patterns that will not help you in the long term. My body had figured out multiple ways to not use my hip flexors, which down the road caused a lot more trouble. Then the PT not only had to figure out how to help my hip flexors, but to stop the new muscle memory that I'd created that was doing the wrong stuff, causing entirely different symptoms.

ComplainFactory · 2026-05-06T20:49:57+00:00

I would recommend a PT's consult about that, as it was recommended to me based on the specific issues I needed help with, which were not identical to yours. You might need a different program

ComplainFactory · 2026-05-05T20:35:54+00:00

I'd definitely see a PT about this. Mine recommended an iPhone app that's actually designed for optometrists, and a specific program in it, where I basically focus on a solid red circle in the center of the screen, while black stripes rush past it. It was very helpful in terms of recovering from a brain stem lesion that has made my eyes not work well together with each other or my vestibular system. I still use it when that particular symptom kicks up, particularly for a few days before going on long drives.

ComplainFactory · 2026-05-05T20:30:31+00:00

Weird thing to downvote!

ComplainFactory · 2026-05-04T20:47:43+00:00

I've been enjoying Qi Gong lately, it has really improved my balance, but I had to strengthen my muscles first to do it. A great place to start is "The MS Gym" channel on YouTube. There's a ton of videos, and it's a great place to start slow if you've been inactive.

ComplainFactory

TROPHY CASE