I want to share some of my experiences from the last 3yrs since my MS diagnosis.
It started with reflux and spitting mouthfuls of bile. Also, with ocassional ingrowns on my face, my face skin suddenly became more bumpy. According to the last dermo I've consulted, it was an immune system reaction to the ingrowns by covering them in a cyst.
Withing a few weeks I woke up one day with my body numb below my neck. Honestly because I had a busy schedule at the time with school, last semester before graduation, and gym, and other activities, I didn't take notice or worry too much for about 2 days. I was still moving normaly, but I had no feeling on the surface of my skin, my body felt weird while showering, (not) feeling the phone in my pocket, and so on.
I started Avonex within 2 weeks of my diagnosis. Before the Avonex, the dr had me do 3 sessions of 1h IV steroids. This was all happening between Jan - March 2014.
After graduation, I moved from NJ to FL. The numbness was starting to go away towards the end of the summer, and by Oct 2014 it was gone. All that's left currently is my right hand palm, some parts of it still feel tight and I often drop things out of my right hand. This hand is the original spot I felt the numbness before waking up with a numb body.
The numbness was not that bad. But after I got feeling back in my body, I realized I was feeling another kind of tightness/pressure. I was CONSTANTLY bloated. I suffer from constipation, it got better with diet (vegan, 2yrs now), but I still don't have a BM for 2-3 days if I don't do an enema. And I let it go for days without enemas, but that just game me months of hemorroids because of the eventual pushing.
I also suffer from GERD. My stomach is constantly filled with bile and all the way up my esophagus. I wake up in the morning and if I bend over the toillet I'll spit bile from down my throat. This condition has been THE WORST. It destroyed my social life and it's what put me in a continuous depression since. Now I eat only once a day, I used to be 170-175lbs of toned muscle, and today I'm under 160lbs.
Doctors have been of no help. During the time I was looking for medical help, they basically experimented on me with medication which I belive it has added to my depression: Reglan, Librax, Questran, antibiotics, Amitiza, Linzess... the ONLY medication that has ever worked on me is Nexium, which makes the difference with heartburn. But because of the weak sphincters of my stomach and esophagus the bile doesn't get flushed.
To add on top of my depression, 6months in 2015 I suffered from major nerve pains in both my legs that made walking extremely painful. At the time I took Oxi, which made my constipation 1000 times worse. The pain started going away when I decided I can do physical therapy. There is still some pain left in my left leg, and it flares up when sitting for longer periods of time or certain positions.
Now I eat vegan mostly, and most of the complications from the medication side effects are gone. My depression has gotten much better since I started learning what the ACTUAL CAUSES of my hardship were. Again, doctors (gastroenterologists) were of NO HELP. None treated ME, they were all treating textbook conditions.
Today I'm looking for employment for the first time in my life. But at almost 32yo it's really hard without experience. I had a plan for my life after graduation but it got cancelled by MS and its complications. My face looks like I've been suffering from acne all my life, cheeks covered in scars, but I've never had skin issues before MS. I walk around bloated every day, and I throw up bile several times a day.
Any thoughts or suggestions about the GERD and MS connections?
My face will hopefully heal in time, but it's definitely an obstacle while looking for a job. The constipation, let's say, can be controlled with enemas and senna leaf tea. But the bile relfux is a KILLER. I can't go to the gym, I can't have a normal routine because of it, if I don't throw up, sometimes up to 2h/day, very exhausting.
Have you tried warm lemon water to begin your day. For the bloat, 1/2 tsp baking soda in a glass of warm water. For the constipation probiotics twice a day, one that has at least seven varieties of beneficial bacteria. Also plenty of celery.
for the constipation nothing works, I tried probiotics, fiber supplements, laxatives, and no improvement, diet overall is the only one that kinda sorta made a difference, my system is just slow, I even had the same meal and I'd have different results from day to day
the baking soda I haven't tried yet, but the bloating in my stomach is due to the bile reflux, as soon as I expel some I also get to burp a lot of air too which is the only way to release the pressure I feel all the time, but I've started to worry about my teeth being affected
I did the lemon water, also ACV, with honey, with cinnamon, that's all I've been doing, experimenting
I am 22 years old, fighting MS since 2015. I never heard of anyone else with these problems, so I am so so so glad you shared! I feel embaressed when I talk about it, but I do have hemmerhoids too because it takes me a few days to get a BM.
What I have been trying is to keep up with my probiotics as well as increase my fiber- pruns really aren't too bad, just start off having one a day and get up to 2-4 eventually.
My hemmerhoid gets really inflammed sometimes though and I get scared, haha.
Keep up the vegan diet, maybe try going gluten free as well, look into Dr. Terry-Wahls! She has some great advice, I also follow her on Facebook.
Thanks for sharing your story! I am so glad things are finally looking up! :)
hey Jen, wow it affected you so young, i'll look up that doctor for sure
I tried prunes and prune juice, no change, I still have probiotics at home from the last time I purchased them, but they don't make a difference either, this is all i've been dealing with for the last 3yrs, trying to see what works, I ingest plenty of fiber, I supplement with ground flax seed too
I am loathe to say, check the side effects of the meds you are on, some cause constipation. Also, do not drink any cold liquids, no ice, and also try just drinking warm water, that will also break up the gas.
other than Avonex and Nexium, I haven't taken any other medication since early 2016, and I only drink water at room temperature, I'm European so I didn't grow up with ice in drinks anyway, not a fan of it :)
Have you checked the probiotics to see how many varieties are in the bottle? the more the merrier.
mine are from Renew Life - Ultimate Flora, 10 kinds, I do my research if I know what I'm looking for :)
and a tablespoon of mineral oil or olive oil for breakfast
mineral oil? this is new, will look it up for sure, I did try the baking soda in water once and it seemed to work pretty well, I'll do it again soon
Unfortunately I really don't have any information about GERD and MS connections, but I'm glad you've reached out here! It looks like you've gotten some great support and suggestions so far from people in similar situations.
In regards to looking for employment, this link may be helpful to locate some local employment search help and resources.
I hope you're able to get relief from these symptoms soon!
castor oil instead of mineral oil, even though it tastes lousy. Mineral oil may be too much, even food grade.
I've been thinking of castor oil, but didn't try yet, my biggest issue tho is not the constipation, my current diet works ok, I'm more affected by the bile reflux I have, for which I'm doing an elimination diet at the moment, that's why I was wondering if GERD is that common in MS patients... I have read some confessions online from people saying they have MS and describing very similar symptoms to what I'm going through, but they were a few years old..