Gastroparesis as part of MSA

[robet1968]

Hello all,

I am new to this web community, but have been dealing with MSA directly since 11/22 when it was diagnosed, and with signs pointing towards it since 1/20. My latest challenge is likely due the effects of gastroparesis, which after any eating causes me to have severe tightness in my lower central chest and upper abdomen, more rapid breathing, difficulty moving or relaxing. I am thinking this is result of eating, going to the bathroom, stress, or medication, or all of them. The tightness can last from 40 minutes to a couple of hours at a time, and is debilitating.

Has anyone experienced this phenomenon and, if so, is the anything that can be done to mitigate?

Thank you for your time!

[Yanno]

Hello, welcome and as always, so sorry you need to be here. I usually point people to the MSA Trust website here in the UK but on this occasion there is a very interesting article about MSA and Gastroparesis here on the USA Mission website: missionmsa.org/gastroparesis-and-msa/#:~:text=One%20of%20the%20autonomic%20functions,due%20to%20poorly%20functioning%20muscles.

Good luck, Take care, Ian

[robet1968 in reply to Yanno]

Thank you Ian! Much appreciated! I do think gastroparesis is a big part, along with various life stresses! I’ll look at my diet first, just browsing the list lets me know l eat almost nothing right !

Thanks again,

Rob

[Gill-C]

oh yes yes and yes again! You have described exactly what I experience. Even when one has had it so often that one realises it’s not a heart attack, it’s still very frightening, miserable and, as you say, debilitating. I will study the article Yanno has signposted with interest and thanks for raising something that I honestly thought was peculiar to me. All the best, Gill

[robet1968 in reply to Gill-C]

Hi Gill,

Hope you find something that helps, and please let me know what it is if you do! For me, this started a couple years ago when I tried some of the progressive anti-anxieties. Each one I tried ended up causing what amounted to extreme hot flashes at 5am every day. Then I would wean off and they would pretty much go away, and if they occurred they were far more mild. So I stopped taking those. I went through four different ones at varying doses. They seemed to be gone, and then I added droxydopa to help with the orthostatic hypotension. It was ok to start, but then after a month it seemed to be losing effectiveness, so we bumped up the dose twice, but that is when the flashes returned, not hot anymore, but the tightness was more severe. So then we stopped the droxydopa, and went to Florinef which wis where I am now. Again, first couple weeks ok, then flashes again. Now not sure if it’s the medicine , stress, gastroparesis, all of them, none of them or what, I put some validity on the stress aspect, but I don’t think it’s the whole story. I am going to go off of the Florinef and increase my pyridostigmine, and we’ll see if that works. I have 6 uti in the last 18 months, so I’m sure that hasn’t helped either. Let me know if any of this is familiar, maybe we can figure something!

Thanks again and take care,

Rob

[Gill-C in reply to robet1968]

Sadly not familiar with any of these medications. I got extremely dizzy on co-careldopa, went on to Ropinerole and the whole chest tightening thing came much later. Not had the hot flushes. Some triggers are predictable eg I always get it after flying. Often also if a meal has been rushed or rich, but equally it can just be out of the blue. That’s the trouble with MSA - we never know what is and isn’t attributable to it or what has caused what!

[robet1968 in reply to Gill-C]

That seems to be MSA in nutshell. Even the medicines are different from patient to patient, there’s no set playbook. For many conditions it’s you have X, you take Y, and the expected outcome is Z. With MSA we have X, we take Y, T, W, N, F and Q, and sadly we know what the outcome is. The fact sheets provided by MSA Trust are excellent, unfortunately there’s no prescription fact sheet to be followed as evidenced by the fact you have no idea what I’m taking, and vice versa. It’s hard to treat something reliably where the cause and effect is not certain. Like losing energy. You would think you could measure all the energy items possessed by a healthy individual, see what’s deficient in MSA patients, and figure out how to replenish. I know that’s a simplistic view, but hopefully logic can prevail at some point over this illogical condition.

Thanks again Gill for your responses,

Rob

[Helenhooter]

Hiya

I have gastroparesis but find its improved by taking metoclopramide and avoiding raw food

H

Good luck

[robet1968 in reply to Helenhooter]

Thank you! So are you including fruit as raw food ?

Much appreciated!

Rob

[Anovis]

Hi Rob, I've been diagnosed with PD for 13 years and started having the symptom you describe (discomfort in the sternum area, usually after eating, that sometimes radiates to my back the varies in intensity). This started in January of this year. I've tried just about everything but still have the symptoms most days. The pain does not respond to antacids. I haven't gone through any testing because, like you, there are so many possibilities and I was hoping I could figure it out on my own. I recently became aware of gastroparesis and started following a diet plan that I found on the internet for this condition. It's been about a week and I still have daily pain but it seems less intense overall. I'm going to give it another week and if no improvement will head to the doctor.

[robet1968 in reply to Anovis]

Hi Anovis, thank you for your message and I’m sorry you are suffering through this as well. I am also going to try altering my diet, but like you not convinced it’s the whole story. I do find that activity mitigates it somewhat, taking my thoughts off of it and other stresses. Easier said than done though as this inhibits my actions greatly.

Thanks again and please let me know how it goes

Rob

[Helenhooter]

Yes all raw fruit except bananas and a few raspberries and blueberries which I have occasionally on porridge

[HenryCarter in reply to Helenhooter]

Given your diagnosis of MSA and symptoms of gastroparesis, managing your diet is crucial for alleviating discomfort. Focus on small, frequent meals that are low in fiber and easy to digest, such as cooked vegetables without skins, lean proteins, and soft foods like applesauce and mashed potatoes. Avoid fatty and high-fat foods, carbonated beverages, and large fluid intake with meals. Opt for liquid-based foods like soups and smoothies and maintain regular meal times to aid digestion. Keep a food diary to track triggers and consider consulting a dietitian specializing in gastrointestinal disorders for personalized advice. Working closely with your healthcare team will help adjust your diet to manage symptoms effectively.