u/Putrid-Strawberry-98

Is anyone with gastroparesis basically unable to eat small meals, snacks, or really anything throughout the day? I’m struggling so much with this right now that I barely leave my house. Some days the pain gets so bad that I’m just curled up in a ball.

For about 6 months my stomach issues have gotten progressively worse. Most days I don’t eat until late evening. Even a few bites earlier can cause hours of nausea, horrible acid reflux/burning, bloating, fullness and pain. The pain can be all over my abdomen and radiate into my sides and back, including my lower back. After that, I just can’t eat again for hours.

What confuses me is that eventually I can get genuinely hungry and sometimes eat a decent-sized meal, but then be in horrible pain afterward. I also don’t vomit. I’ve gone so long without eating that I’ve gotten shaky and felt like I might pass out, almost like hypoglycemia, even though I don’t have diabetes.

I have MS and gallstones, although my ultrasound showed no blockage and my HIDA scan showed normal function. My doctor is sending me for a gastric emptying test but already is thinking I have this.

I left my neurology appointment yesterday feeling a little defeated, and I guess I'm just looking to see if anyone else has had a similar experience.

First, I want to say that I genuinely like my neurologist. He's kind, listens, and I can tell he truly wants to help me. This isn't against him.

What left me feeling discouraged was our conversation about pain.

For me, pain has always been my biggest MS symptom. I experience constant stabbing pains throughout my body, burning sensations, muscles that seem so tight at times it’s so painful to extend arms and legs, even stretching everything seems to tighten back up. feels like significant spasticity. I can often see my muscles twitching as well. At times, it feels like my muscles are fighting against themselves. The pain is exhausting.

When we talked about it, he mentioned that pain isn't something he commonly sees as the symptom in people with MS or I am guessing maybe he meant as a main symptom.

I don’t think he is saying this to be combative but maybe the patients that he has generally don’t complain to much about the pain like I have.

I know MS can cause pain. I've read that countless times. But hearing that from my own neurologist makes me feel like I don’t know what my deal is.

We decided to try Lyrica instead of the Gabapentin and PT and I do take a muscle relaxer as well. hopefully I can get more relief.

Has anyone else experienced MS this way, where pain is your primary symptom? Did your neurologist acknowledge it as part of your MS, or did it leave you questioning yourself too?

Not sure if this is directly related to MS, but sometimes I can only manage one meal a day, and the past few days have been especially bad.

This morning I had a smoothie with oats, banana, and almond milk. Five hours later I'm still painfully full, cramping, and dealing with burning and reflux into my throat.

It's like my body wants food because I'm hungry, but when I eat I feel extremely full and in pain. Usually I can only eat one meal later in the day when my stomach finally settles down enough to tolerate it.

My gastroenterologist wants me to have a gastric emptying test, but I have to stop my pain medicine I take for MS Pain for two days beforehand, and I don't know how I'll manage.

Has anyone else experienced something like this? If so, is there anything that has helped?

I think it's spasticity. I get stabbing pains in my arms, especially under my armpit in the crease. At times it feels like someone is stabbing me over and over. I also get the pain along my side, from my armpit down.

Does anyone else get this? Is there anything that helps? I try to stretch it, but I'm not even sure if I'm doing the stretches correctly.

I’m trying to figure out if my neurologist is the right fit for me or if I should get another opinion. I only see him every 6 months, usually right before my Briumvi infusions. He is very responsive to messages and does try to help when I bring up issues, but sometimes I still feel like there could be more follow-up or guidance.

For example, when I mentioned throat pain and asked if it could possibly be MS-related, it felt a little brushed off at first but finally he decided to sent me to speech therapist to check throat. The same thing happened when I first explained that my main symptoms were stabbing pains all over, along with leg weakness and numbness. During the exam he was checking to see if the pain aspect or it was more of a muscle injury issue, but later on after more discussion he seemed to understand these were my MS symptoms.

I guess I just feel conflicted. Part of me feels like he does the bare minimum, but another part of me feels like if I were truly relapsing or something serious was happening, he would respond quickly and take it seriously. I think I expected more regular check-ins with my neurologist.

Honestly, I’m mostly just wondering if I’m overthinking this. Do most people with MS only see their neurologist when there’s an issue, or are regular check-ins more common?