Hi all, I am new to this forum but hoping others experiences can help me to understand where my diagnosis is going.
In a short recap of my medical history, have had pins and needles in my hands and feet for a number of years, was initially told it was carpol tunnel. However symptoms got worse over the years and ended up with numbness in my arms, heavy feeling in all limbs, falling over all the time and dropping everything.
Went back to my docs and had nerve conduction tests - neuro surgeon said that there was slowness in signal but based on other symptoms he wanted to refer me to neurologist.
I had a great neurologist who I explained all symptoms to - she asked lots of questions and did a few tests there and then and then instantly sent me for an MRI scan. MRI confirmed lesions on the brain. I had of course started to google symptoms and by this time was pretty sure myself that it was MS. Neurologist then sent me for lumbar puncture. Her words were " i am almost 100% sure this is MS but want to do a lumbar puncture to connect all the dots"
After the most horrendous lumbar puncture procedure (almost 4 hours bent over whilst they tried to get the tap in) my GP and I received a letter from another neurologist who said that lumbar was clear and that he did not believe it was MS. He advised that migraines I had had as a teen (i m now 38) were the cause of the lesions and that the symptoms I was currently experiencing are secondary to the migraines. This neuro has never seen me and has written off the diagnosis my first neuro had provided based on lumbar only. It turns out my old neurololgist has now left and this other guy is my new point of contact.
As I said i had migraines in my teens but they are very rare now. I now get headache pain at the back of my head near my neck and my eyes are sensitive esp to the light) but not like with a migraine.
I was devastated (i thought i was close to getting some help and support) and went back to my doctors. The dr was furious that this neuro could make this diagnosis without even seeing me and has written to him to say so. I have a follow up appt in Feb, where I am taking a full diary of my symptoms that I am having on a daily basis in the hopes that I can prove to him that my symptoms are not secondary, but are life changing.
I have had to change my car so that I have an automatic with adaptive cruise control as my legs go numb if i drive for too long. I can’t do the weekly shop anymore as I get too tired, I can’t walk my dogs or run in the park with my kids as i get too tired. I cut my hands and burn myself on the oven most days as I do not feel the heat and I have dropped more crockery and glasses in the last year I have lost count. If anything is on the side my arms are like a magnet and seem to knock it off!! I can’t walk up the stairs to my bedroom without feeling exhausted at the end of it…These symptoms are not in my head and have changed and are changing my life all the time.
Has anyone else had mri showing lesions and then a clear lumbar? I just don’t know where to go from here
(sorry that wasn’t short at all was it!)