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18 years old with Symptoms of MS, but still no diagnoses.
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MissUndiagnosed posted:
Okay, so im new here and just wanted to ask if anyone on here with MS had missed diagnoses with it before, like doctors saying its not MS when you have the symptoms, and then it turns out you do have it.

Im 18 years old with a 2 year old son, About 6 months ago, i woke up one morning with one pupil noticeably larger than the other, and trouble seeing. I went to my eye doctor (Because i do have an astigmatism) and had an emergency medical eye exam. Everything looked normal, and they told me to follow up with my doctor. The next morning, my eyesight was way worse, so i went to the hospital and was admitted. After spending 2 days there and having numerous tests run, they told me they couldnt find the cause and sent me home. Since i cant afford a primary, i just ignored it, and in a few weeks it went back to normal. About 2 months after that, i was watching a movie when all of a sudden my legs felt jumpy and tingly. I thought they were just falling asleep and ignored it. The next morning, i woke up and my legs were numb. My mom said it was just restless leg and told me it would go away, so i went about my business as usual. The next morning, i couldnt move my right foot at all, and the numbness in both legs was noticeably worse. I went to the hospital again, and all they did was run an EKG and tell me im fine and send me home. I got fed up, the next night i went in to a different hospital in our area, and they admitted me. I stayed in the hospital for a week and a half, having numerous cat scans and MRI's of my head, neck, spine, and pelvic area. I also had a spinal tap. The doctors thought for sure this was the onset of MS. Everything came back fine, except for one CT scan of my brain which showed what looked to them like a lesion, pointing to MS. So they did an MRI of my brain, which came back clear with no lesion. They ran lab work, and EVERY little piece came back normal. They couldnt find the cause, but i clearly couldnt even walk or move my right foot. They sent me home, with physical therapy and said to follow up with a nuerologist, but i cant afford a nuerologist, so i havent seen one. I had one session of physical therapy a week after being discharged from the hospital, and then a few days later, i could walk fine and symptoms were going away. Now, about a month later, i still have some numbness on the surface of my skin on my left leg and side, but i have full function of all of my parts again. About a week ago,i was beinding over to dry my hair, and i felt this buzzing down my spine to my foot. It scared the hell out of me. It happens almost everytime i bend over now, or extend my neck. Its not painful, just buzzing and vibrating. Can anyone shed some light?
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Rory26312 responded:
Hi MissUndiagnosed

The simple answer to your question is that yes many people including a few on here have been told that the do not have MS only to be told later,often years later, that the do have it.

Testing can still be hit and miss depending on many factors not least of which is what the doctor knows about MS. Another one is the strenght of the MRI machine and again the knowledge of the radioligist reading the images.

Much of what you describe could be remitting relapsing MS (RRMS) but the could also have many other causes.

You say you cann't afford primary or neuro care but there are ways of getting help .Catholic hospitals often run programs for the needy that cover doctors and testing. Another resourse can be county health clinics in your area. One other thing you could try is to see if there is a local MS support group that may have some suggestions.

For now all I can advise is that you try to work out some sort of coverage and try to find a Neuro who specialises in MS , then gather together all your hospital records and get a second opinion.

There seems to be something going on with you but some doctors may try to tell you it is all in your head or that you are doctor shopping for a diagnosis or even worse meds. If this happens you will have to advocate for yourself ,as you are the one who knows best what is going on with you.

Hope all this helps some bit but at least you know that you are not alone, stay in touch and let us know how you are doing.

Rory


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