Neurological symptoms and diarrhea

Posted by anna15 @anna15, Oct 8, 2022

I don’t know what to do anymore, I thought maybe if there is someone out there who’s going through something similar it could help posting and asking…I’ve had a feeling of weakness and dizziness off and on since July. In august I was ok. Then in September I had random sensations off and on but daily on my left foot, leg and hand. I also have been having diarrhea pretty much daily. Sometimes less liquid but looks undigested. I also get sensation of muscle weakness but my limbs work fine. No paralysis, numbness. More recently the sensation in my leg became a buzzing sensation in my left foot off and on. Nothing stays it all comes and goes but it’s there every day. I’ve also had a left itchy shoulder off and on. I have also felt some symptoms on my right leg, more like a weak feeling in my leg but still works fine. I do get the weakness sensations in my hands too off and on. Some days better than others. I have a black floater in my left eye off and on. The doctors say that’s normal. Eye exam normal. Head mri normal and a lot of bloodwork normal, including anti inflammatory markers and autoimmune markers. I’m pretty sure many people around me think it’s anxiety but this is different and lasting more than a month now and the diarrhea has me concerned. I don’t have stomach aches it just happens. I’m waiting for a neurology consult but worried it will all be brushed off since all the tests so far are normal. I have the option of doing a spine mri but it will cost me a few thousand dollars. It’s bizarre though, I figured If something wrong with a specific area of my spine the symptoms wouldn’t be migratory like that. Different areas of the spine control different limbs and parts. It feels like it’s a sensory issue but the weakness feeling seems muscular as well? Thank you anyone for any advice or ideas

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Hello and welcome, @anna15. Thank you for coming to Connect to seek support. We're happy to have you. Feeling at odds given the variety of concerning sensations, weaknesses and digestive trouble you've been having is understandable. You're on a good path so far of ruling out varying diagnoses. Has your primary care provider been overseeing your tests?

I agree neurology is the next logical step as it does sound related to your central nervous system. After ruling out everything under the sun, I was diagnosed with a central and peripheral nervous system disorder called Central Sensitization Syndrome which can affect much of what you describe if upregulated. I'm not a medical professional, only have my own experiences to go by, but it might be worth gaining knowledge of. CSS typically is process of elimination as there are no tests that prove it.

Here's more from Mayo Clinic's Dr. Sletten on Central Sensitization Syndrome in case you are interested:
https://youtu.be/vJNhdnSK3WQ

You mention anxiety. Do you normally struggle with anxiety? I do not believe anxiety created all of your problems, but as you'll learn from the video, it can be a contributor to symptoms and flares. Have you had any traumatic events prior to July, any surgeries or mounting life stress?

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Well I am an anxious person but I feel like the symptoms and what I am feeling is currently making me anxious. I have had traumatic events in the past. I also had similar vibration sensation in my foot in 2017 but it settled months later. This time there are more symptoms. I also had a baby in March by c section. My baby was diagnosed with a heart defect that was stressful too. I’m trying to make the connection to 2017 when I had similar symptoms. I also had a brain mri then and neurologist assessed me, his answer was just stress. This doesn’t feel like stress related but that’s what everyone around me keeps saying. Thank you I will watch the video. What were your symptoms like before you got the diagnosis?

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@rwinney

Hello and welcome, @anna15. Thank you for coming to Connect to seek support. We're happy to have you. Feeling at odds given the variety of concerning sensations, weaknesses and digestive trouble you've been having is understandable. You're on a good path so far of ruling out varying diagnoses. Has your primary care provider been overseeing your tests?

I agree neurology is the next logical step as it does sound related to your central nervous system. After ruling out everything under the sun, I was diagnosed with a central and peripheral nervous system disorder called Central Sensitization Syndrome which can affect much of what you describe if upregulated. I'm not a medical professional, only have my own experiences to go by, but it might be worth gaining knowledge of. CSS typically is process of elimination as there are no tests that prove it.

Here's more from Mayo Clinic's Dr. Sletten on Central Sensitization Syndrome in case you are interested:
https://youtu.be/vJNhdnSK3WQ

You mention anxiety. Do you normally struggle with anxiety? I do not believe anxiety created all of your problems, but as you'll learn from the video, it can be a contributor to symptoms and flares. Have you had any traumatic events prior to July, any surgeries or mounting life stress?

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Im curious, what are your symptoms and how do you treat this? I’m worried my neurologist will see my results and say it’s just stress.. I started taking an anxiety medication today so that by the time I see a neurologist I can have an idea if it helped or not. I probably shouldn’t google but everything I google it doesn’t match up with my symptoms.

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@anna15

Well I am an anxious person but I feel like the symptoms and what I am feeling is currently making me anxious. I have had traumatic events in the past. I also had similar vibration sensation in my foot in 2017 but it settled months later. This time there are more symptoms. I also had a baby in March by c section. My baby was diagnosed with a heart defect that was stressful too. I’m trying to make the connection to 2017 when I had similar symptoms. I also had a brain mri then and neurologist assessed me, his answer was just stress. This doesn’t feel like stress related but that’s what everyone around me keeps saying. Thank you I will watch the video. What were your symptoms like before you got the diagnosis?

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You're welcome. It's best to chat after you watch the video so you have a better understanding of symptoms and treatment. The toughest obstacle is getting through the cycle of pain that happens when we experience symptoms, fear of the unknown, stress and frustration over symptoms and how it affects life. It can be like the expression, which came first the chicken or the egg? How does one thing impact the other and so on.

Are you seeing the same neurologist as in 2017? Do you have large teaching hospitals near by? When is your next neurology appointment?

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Yes i will see the same neurologist but I don’t have an appointment yet I don’t have any pain but I have other bizarre symptoms. I’m worried no one will be able to figure it out.

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@anna15

Yes i will see the same neurologist but I don’t have an appointment yet I don’t have any pain but I have other bizarre symptoms. I’m worried no one will be able to figure it out.

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Please have faith, someone will figure it out and you will be strong to persevere. I understand that its tough to think positive but believe me, positivity is your friend. What type of ways do you work towards calming your anxiety? You mentioned medication. Have you considered practicing mindfulness meditation? Here's an example of a small 1 minute step to take:
- https://connect.mayoclinic.org/newsfeed-post/stop-practice-a-mindfulness-technique/

Maybe finding a quiet space to be at peace and focus on diaphragmatic breathing will help. It took me a while to get it down, belly, not chest breathing, but I did and it really helps calm my tensions and clear my mind. Will you give it a try?

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I guess my anxiety about this is that everything takes time to figure out and I’m scared of symptoms becoming worse before diagnosis can be made.

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@anna15

I guess my anxiety about this is that everything takes time to figure out and I’m scared of symptoms becoming worse before diagnosis can be made.

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I completely understand, truly, I do. Keep doing your best to stay focused on working with doctors to rule things out. One step at a time, one day at a time, one thought at a time.

Do you have the support of family and friends? Who provides you with encouragement?

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@rwinney

I completely understand, truly, I do. Keep doing your best to stay focused on working with doctors to rule things out. One step at a time, one day at a time, one thought at a time.

Do you have the support of family and friends? Who provides you with encouragement?

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I have family and friends they all think anxiety. I also have two little kids under 3 so it makes everything more challenging

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@anna15

I have family and friends they all think anxiety. I also have two little kids under 3 so it makes everything more challenging

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Yes ma'am, you definitely have a full plate with two little ones under 3. Bless your heart.

I'm hoping the anxiety medication you're beginning will provide some relief. Fingers crossed.

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