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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Have You Experienced This

A MyMSTeam Member asked a question 💭

Hey everyone! So I’m new to this but for a few years now (4) I’ve been having more and more strange symptoms. Starting with tingling and numbness in hands and feet. Then next pain in my left hand only when pushed on. Saw daughters about this and nobody ever knew. Had my second baby September 2017 and a few months after started experiencing very weird sensations and muscle weakness on my right side. Then my right eye started having itchy watery redness to it. I immediately freaked out and went to… read more

May 15, 2019
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A MyMSTeam Member

I had several MRI's before I was diagnosed with MS. I was constantly fatigued and had slight memory issues but when I went to emergency rooms the ER team would tell me that I was just suffering from migraines as there were no lesions. Almost 10 years later, my right eye started to wander, I had facial tics, couldn't speak in full sentences, always biting my tongue or cheek, could hear the blood rushing in my right ear, was dizzy, and couldn't swallow. I lost 60 lbs in 3-4 months. I went to every doctor and specialist that you can imagine. I finally went to my ophthalmologist and he found a lesion on my optic nerve. He sent me to the ER and called ahead to make sure that I was tested for MS. I was diagnosed with RRMS in 2010. You know your body better than anyone else and if something is wrong tell someone about it. Stand on top of the roof and scream at the top of your lungs until somebody listens. I wish I would have done that, but I let my ex-husband convince me that I was a hypochondriac. Make a list of your symptoms on a day to day basis and take it to your appointment. In the meantime, STAY STRONG and TRUST IN YOURSELF! Wishing you all the best!

May 16, 2019
A MyMSTeam Member

Contact your nearest Lyme Disease Association and request a referral to a Lyme Literate MD (LLMD). If you have any questions, I'm happy to help. I have Neurological Lyme which is MS.

May 23, 2019
A MyMSTeam Member

You need an excellent neurologist & other great GI & maybe even ob-gyn doc. Some symptoms could be ms related but others could be stomach, uterus or GI track like endometriosis in the uterus. Took a friend years for them to diagnose her. Find the experts rather than the ER where you’re probably going to get a resident. God luck .

May 17, 2019
A MyMSTeam Member

Second opinions are also very informative and helpful (specialists are the best). Best Wishes!

May 16, 2019
A MyMSTeam Member

You are not alone. Not on here. Some MRI's can look clear but that does not mean that you do not have MS. My first brain MRI was so clearly MS that the only reason that they didn't actually call it definite MS was because of insurance purposes. I had just had back surgery from a Herneiated disk and the neuro surgeon who operated on me was suspicious of something more going on. So it was actually him who found it. My 2nd MRI about a year or so later showed 6 new brain lesions, 3 of which were currently active. I was at first devistated but it did explain some strange things that had happened to me in earlier years but I honestly just thought they were things that everyone experienced in life.
It is frustrating when you hear, "All is normal". What would be a little more acceptable to deal with is if they said, "We didn't see anything but we are not going to give up on trying to find out what is going on".
My wife has Fibromyalgia and that is an even harder thing to diagnose and is also frustrating.
You are your biggest advocate and are not a dramatic baby when you know darn well that something is going on.

May 15, 2019

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