Strange symptoms for 2.5 years now from neuro, BFS. bowel issues

@joannemm30809

You surely must be frustrated. Many of us have been where you are, searching for an elusive diagnosis and it is difficult.

Because of some of the sensory problems you've experienced, I'd like to invite Rachel, @rwinney, to this conversation. She might be able to lend some thoughts.

Also, you don't mention seeing a GI specialist, but I'm assuming with the digestive disturbances that you have probably had a GI workup. Have you looked into any dietary problems like gluten, dairy, etc.?
We have a discussion on the Fodmap diet which might be helpful if you've never tried it. Here is the link, https://connect.mayoclinic.org/discussion/fodmap-eating-plan/,

Have you posted about this in the Digestive Health discussion group? If not, it might be a good idea.

Thank you for responding. Anyone please do chime in with your opinion. I did not post to a digestive discussion group yet

Hi Joanne, no need to post this to the Digestive Health group. As moderator, I am able to post the same discussion to multiple groups so this one appears in both the Brain & Nervous System group and the Digestive Health group. That way you can get responses from members of both groups into one discussion.

I hope that members may be able to provide some thoughts for you to explore with your medical team. I'm glad that you have a team of experts working with you to get to the bottom of this.

Hi Joanne, I've been looking into the Metabolic Syndrome to see if there are changes I can make that might help with my neuropathy. My symptoms are not as bad as yours but I do have a lot of what I feel could be the start of GI issues the past few years and I'm wondering if it may be the reason. I've also been labeled with prediabetes for many years. Here are a few articles if you want to do some digging.

-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders: https://pubmed.ncbi.nlm.nih.gov/21997383/

Thank you so much. I'm at my wits end both physically and mentally. I'm so tired and fed up.

try walking 2 miles every day. That's all I've got but walking is like a miracle drug.

YES!! It is horrible along with all other problems but they may go away of you just get on a low dose pain med and surgery. You can't live with all that bone disease. I have it all and have had 4 back surgeries due to it. You need to see a great Neuro to figure this out! A very highly regimented one. Plea your case to the Mayo Clinic honey!!! Love and Hugs and don't give up!!!!!

Hi Joanne. new here, so this is my first post 🙂 sorry to hear about your struggle but hopefully you can find peace for yourself, every day is a new day, at least I try to think that way. My accute symptoms started in January this year - before this I would have issues with bowel movement occasionally the past year 2021. But now it started to get strange, when I started taking (herbal) supplements to regulate my brain function and anxiety. So there is the connection for me! Since I took those supplements, it stopped being able to go (although there was bowel movement). Of course the first 2-3 months I'd not have thought of them being an issue. So I gradually stopped eating: wheat, processed food, cheese, milk, dark chocolate, meat. When I stopped taking the supplements for about 1 1/2 weeks (I was away on holidays and did not take them with me) it gradually seemed to get better. So when I came home and as soon as I started taking them again, the problems came back, big time. So I stopped taking them, and a few weeks it seemed fine and back to normal. Until about 2 weeks ago... I started reading about various diseases, until I got a strange pain in the back on one side. I found the closest symptoms to describe it, is Crohn's disease. It feels inflamed, comes and goes, has a few heavy personal triggers (for me this is egg. onion, milk for instance). I'd sleep all night, and wake up with extreme fatigue. Which ties down after some 20 minutes. I learn now that I definitely should stop drinking coffee, which will help my wallet, too. Wishing you all the best!

I too have had similar symptoms. I do have a Rare Neurological condition, but I would get terrible abdominal pain, nausea and sometimes vomiting with constant bowel movements. Like you, not diarrhea. My entire body would be in pain. Then I noticed when I took an antibiotic all the pain went away. So I stated researching this and found out that I have Mesenteric Lymphadenitis. Because of this, the first time I got this attack, they took out my appendix which was not necessary, but back in 1984 they had no idea. I do have CLL and I know all my lymph nodes can cause problems, but these attacks are very painful and can last up to 3 days with bowel movements. As soon as I feel this coming on I start an antibiotic and it seems to subside within hours. I hope this helps. Most doctors never think of this condition because it comes and goes.

Hello @sophielee and welcome to Mayo Clinic Connect. It sounds like you've done a lot of research so you could reasonably identify what you were experiencing. That is so wonderful!

How long have you been omitting coffee?