Hi, just want to say I have not been diagnosed with MS so I don't want to come off as insensitive to anyone who has been. I'm a 26 year old male living with IBD and GERD. I've been having a lot of strange symptoms over the last couple months that has me convinced I do have MS. I apologize in advance for the long post.
It started a couple months ago when I woke up with a bad headache, feeling very tired, and my entire body from neck down felt weak and was tingling a lot. I would have funny tingles any time I stretched a bit, wrote something with a pen, etc. Headache, fatigue, and weakness all subsided after a few days. Tingling mostly subsided but still felt a tiny bit there if I stretched too much for example, but it didn't impact me much so I let it go.
A few weeks later I start to have a really bad headache accompanied with nausea for about a week. At the end of the week when my headache started to feel better, I developed more tingling over my body with some slight numbness in fingers, feet that lasted a few seconds or minutes. The tingling was all over my body neck down but I felt it was mostly on my upper back/shoulder blades and legs. I was walking that day and suddenly my legs became weaker and I felt so much tingling in both my legs that I had to sit down immediately. I also developed some bad eye pain in my left eye. At this point I became fearful about MS and I went to see an optometrist. She asked if i was having numbness and tinling and I said yes. She said my eyes looked good but she has seen MS patients with their optic nerves looking normal so she said I should go to a neurologist as she's concerned about the tingling and numbness. This got me even more scared so I went to a neurologist.
Neurologist listened to my symptoms and did a few tests (reflex, pinprick, eye movement, vibration on my feet, hand tremor test). The only thing he saw was that I have a very slight tremor. He said I wouldn't worry about MS and said the tingling is possibly due to anything such as the migraine/headaches, anxiety, and IBD being linked to tingling, etc. After he said this I became a bit more relaxed and I felt my tingling slowly go away (but still not gone completely).
Fast forward another week and suddenly I get severe tingling on all extremeties (but mostly my upper back and legs) but this time I got random "attack" like pains that would last 3-5 seconds. These attacks would feel like they started from my upper back but then would hit anywhere (upper back, legs, arms, etc.). The eye pain also comes back, and has come and gone intermittetently this whole saga. Eventually went back to the neuro, he gave me some medication for the nerve pain/tingling and I've been on that for the last 5 days. It controlled most of the attack like pain, but for the last two days I've felt more tingling and numbness in my right arm, fingers, legs, and feet *only* on my right side. This has caused me to panic more as I've read that MS is usually one sided.
This is where I'm at right now. The tingling just will not go away and the fear of what's causing it is taking over my mind. I admit I do have health anxiety from when I got diagnosed with IBD and the fear of having another chronic, autoimmune disease like MS continues to increase.
While my profile would suggest it's unlikely that I would get MS (male, non-white, live closer to equator, no family history), I do know I have a higher chance as I have another autoimmune disease. I've also read that if a male gets MS it tends to be worse. And I'm sure it's even worse in a male who already has another autoimmune disease.
I really don't know what to do.
Hi apc..., how are you treating the ibd and gerd, are they under control? Did the neuro have an mri done? Do you believe what the neuro said? Do you know that anxiety aggrivates everything negative going on? To be calm is a goal we all need to get through everything we dont want in our lives. Developing a plan is best done with thoughtfulness not anxiety, step one, step two...
RE: Super Brain is a post here that you may want to read, to give you the impetus to take control of what you want to happen. Doctors are fine for temporary fixes but most of our wellness comes from within, we alter our thinking to spend our time with helpful thoughts. Many of us have learned that WE make matters worse by fussing over what is insteading of figuring out how to fix or make the best of what we have. We all have hidden talents that we must harness to get us what we want ---WHAT DO YOU WANT TO HAPPEN -- do you want to feel better(there are some who choose to wallow in misery -- will you choose to take a path to wellness -- even living with ms can be better if we get out of our own way -- are negative or unhelpful thoughts making matters worse -- are we choosing suffering over a better life for ourselves, can we choose happiness even though things are not perfect in our lives.
We all acquire the tools we need to make our lives better, I always think that if you made it past seventeen your life is a success and there is nothing stopping us after seventeen from succeeding except when we get in our own way.
First of all, Maria is 100% correct. It’s true for all autoimmune conditions, stress & worry will make you worse. So the second thing I would do is stop looking on the internet b/c it’s full of stressful scary stories & you don’t even have a diagnosis yet. The most frustrating thing about MS is it’s completely different for every single person. Which is why it’s hard to diagnose.
I think it’s a very good thing u saw an eye dr. If they didn’t see optic neuritis that is EXCELLENT news! That used to be one of only 2 ways to diagnose MS. I’m not saying it’s out of the realm of possibility, but I think it far less likely you have MS. You need an MRI to know for sure. If the brain dr didn’t order 1 then you can’t know for sure. You could request 1 to eliminate any worry.
Lastly, neurologist are a unique breed. It’s important to advocate for yourself. If you’re not feeling better or didn’t like ur doctor maybe get a second opinion to put your mind at ease.
I highly recommend yoga even if you don’t have MS b/c stretching will help with pinch tight stuff and hopefully ease your tingling. Best of Luck to you!