Symptom Help - numbness!!
 

Hi, I am new and seeking help for a laundry list of symptoms I am experiencing, so I hope it is okay to post symptoms, and I certainly appreciate any and all advice anyone would have to share. I'm waiting on a remote second opinion review of my spine MRIs from Johns Hopkins, but am becoming concerned and not sure what to do.

My story begins about a year ago with constant nausea and vomiting, which I am honestly not sure is related. I think the nausea and vomiting might have been correlated to a separate gastroparesis with my type one diabetes, though those scans have all come back clean as well, but since starting the medication for it, I have been doing much better with those symptoms (thank god, too, because after vomiting daily for a year, it's a relief!)

I started seeing a neurologist about six months ago because my GAD65 is very elevated, but I didn't have many neurological symptoms other than brisk reflexes at the time. He did a brain MRI, though, which came back clear.

But, about two months ago I lost complete sensation in my left leg. My EMG says meralgia parasthetica, which seemed correct, until I lost complete sensation in my right leg, and then both of my hands. When I lost the sensation in my left leg and we did the EMG, and he was so certain about the meralgia parasthetica, he did have some concerns about MS, which was the first time I had heard it presented to me and did the full spine MRI, which came back mostly clear, I think?, but he didn't discuss the results with me. We've been really unhappy with this neurologist (who is at Mayo Clinic).

At that time, we decided to send my MRIs and all information to Johns Hopkins for a second opinion, and since then I became completely numb in my other extremities and have not regained sensation. I've also been experiencing some double vision. Am I overreacting about all of this numbness? Is this worth actively pursuing -- I feel like something was overlooked. I am also concerned that the second opinion might not be enough, because it is a remote opinion - I am across the country and will not even be able to speak to the doctor, he looks at my records and issues his comments to my primary care doctor (who, throughout all of this, has remained just very confused).

I'm a musician, and rely on my fingers for school, but I've been out on a medical leave, and this numbness that I'm experiencing would cause me to extend the medical leave for a third semester. But I don't want to do that if I don't have a diagnosis. I'm really at a loss for what to do.

hello and welcome to NT,

i would definitely keep looking for a dx and don't give up on a dr that can help you. it's odd that your spinal mri was WNL. i don't know enuf of what you've described to help. but, i don't feel you should accept the status quo.

where do you live? you can call your local MS Society. to get the # call 1-800-FIGHT MS. that might give you a start. but it might not even be MS.

i wish i could help more. i'd try to get an opinion from a local in your area dr. can your pcp even tell you what direction to look for answers?

please let us know how you are.

I'm sorry you are experiencing all of this. Numbness is really hard to treat without knowing the cause, which there could be a number of things causing your numbness. Maybe discussing treatment options with your PCP might be a good idea. He may be able to at least prescribe something to help with the numbness (such as gabapentin or Lyrica) to see if that helps you so you can return to work. The numbness could be from diabetes as well. Contacting your endocrinologist may be a good ideas too and see if they have any ideas or suggestions.

I hope that you get an answer from the doctors at John Hopkins soon. Let us know how you are doing!:hug: