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@sarahgracesc 

Last reply

sarahgracesc

I’m new

Hello, I’m newly diagnosed. Just with MS, i don’t know specifically what kind, yet. But it’s been about 30 years of symptoms (onset when I was 6. Always knew it was autoimmune, but no diagnosis. So it could be MS all along, or it could be a combination of things), and just FINALLY got my first MRIs a couple of weeks ago. After years and years of fighting. 20-30 lesions on my brain and 6 on my cervical spine. Vision problems, numbness, falling, dizziness, fatigue, pain in hands and feet, digestive issues, confusion, inability to organize thoughts or recall words or thoughts, inability to filter stimuli, significant unexplained weight loss, etc. I also have horrific gastrointestinal issues. I already can’t have gluten or dairy and eat a clean, healthy diet. The past few weeks it has gotten so bad that I’m just always in pain and bloated. Even on days I don’t/can’t eat at all. It doesn’t make sense. Is this something anyone else experiences? It wakes me at night and keeps me up. I wear a post surgical belly wrap in bed because it had been helping to keep the pain and bloating minimized. It no longer does. I’m just always second trimester bloated and in pain. I plan to ask for a colonoscopy, since it’s gotten so bad. I’m just wondering if this could be MS related (I do have a lesion on my cervical spine that does coincide with urinary and bowel issues, both of which I have issues with), or is likely something else entirely? Thank you! Sarah
7
@ItsMewithMS
@ItsMewithMS
 

Welcome to Shift MS and exploring possible MS complications. I see you are in the US and "midland" so am not sure what MS center you are closest to in order to find a specialist well versed in MS, which is what it sounds like you need. I am close to the U of M (Minnesota) and they have a strong Neurologist team as well, of course, as Mayo. It sounds like you need to visit someplace like Mayo to really have this sorted out. I was Dx in 2005 and was on a couple of the first generation DMTs with moderate success but visited Mayo for several days in September as my Neuro felt I had moved into a more progressive phase and recommended I up my DMT to Ocrevus. Mayo seconded his recommendation and that is what I have done. The thorough review and Drs in Rochester MN gave me the confidence to do that. There is good information on the MS Society site as well as a ton of videos on You Tube by Dr Boster. You should learn what you can there and of course on this forum you can ask any specifics and if you follow the tags at the bottom of your post you will see other discussions on those topics. You can also using the little magnifying glass in the upper left to search as well. Hopefully that helps in your quest - welcome and good luck. I have no digestive complications in my MS but others may respond that they do. My issues currently revolve around balance and gait and possibly cognitive impacts. I am waiting for results from my Neuro Psych review that I had done at Mayo in November.

@sarahgracesc
@sarahgracesc
 

Thank you. :) I actually have a panel of experts, but was JUST diagnosed, hence not having more of a diagnosis. I won’t see the neurologists until mid February. They have no sense of urgency at all. Thankfully, my rheumatologist does. I’m mostly concerned about the abdominal issues right now, as I literally cannot eat, and even not eating doesn’t stop the pain and distention. Just wondering if this is an issue others deal with?