In holding pattern...

[Sierravista]

Hi everyone,

I'm in pre-diagnosis limbo. (AKA Hell) My journey started in February when I discovered I had no feeling in part of my left leg. Weeks later I was shaking and in so much pain I went to the ER. Docs there assumed it was sciatica and sent me for lumbar MRI, which was essentially normal. One dr made the off-hand comment that it was possible this was MS. I thought he was crazy and totally rude for suggesting such a thing just from a numb leg. He had also mentioned something about my age and living in the nation's capitol for MS etc.

Anyway, my PCP poo-pooed the suggestion and sent me with my normal MRI to a neurosurgeon, insisting it was still sciatica. Neurosurgeon said no sciatica and sent me back to PCP. PCP said try physical therapy. I said screw this and went straight to a neurologist.

Neurologist (whom I really like, very well-respected in our area, etc) immediately said whatever it is is pathological, which he could tell from basic reflex tests - I have barely any reflexes on my left side at the moment. Fast forward several months and I've since had a brain, cervical, and thoracic MRI, all of which turned out normal but for one small lesion on my brain. Nerve and blood tests also turned out normal, despite the fact that as of now I have no feeling in my left calf, left ankle and heel, loss of sensation in my genitals and left arm, near constant tremors, muscle weakness, pain, spasticity, and never-ending fatigue.

The current plan is to wait a few months then re-MRI at hospital with higher-powered machine. Trouble is, I'm miserable. In pain, walking feels like I'm walking on a floating dock, tremors of both arms and head, etc. Dr doesn't want to treat until he knows the cause. I agree with that in concept, but when it takes me 25 minutes just to type this because my left hand barely functions, I just want to curl up and never move again.

That's my story. Long and complicated like everyone else, I'm sure! I hope it's okay to hang out here a bit even though I don't technically have an MS diagnosis.

A little more about me: I'm in my mid-30s, mom to 2 boys and a girl, ages 9, 7, and 3 respectively. My eldest has autism and my youngest is adopted from Ethiopia. My husband is an author and illustrator of books for teens. I love reading, the outdoors, road trips, and coffee! I love Jesus and helping people realize how much He loves them. I have a degree in Human Services, specializing in criminal justice, but am a stay-at-home mom to my lively brood and 3 cats.

I really look forward to, if nothing else, reading here and finding support to convince me that (despite 4 normal MRIs) I'm not completely crazy.

Thank you!

[apple19]

Hi Sierravista,
Sorry you are going through the difficulties but glad you found us.
My first symptoms were right side weakness so I understand what your are feeling.
My first two MRI's were normal but the third after one year of testing showed lesions. I was formally diagnosed in 2009 but had been battling symptoms for years prior.
The diagnosis journey can sometimes be long and tedious but I hope you get some answers soon.
This is a good place to hang out, ask questions give and get support.

Take good care!

[rdmc]

Hi Sierra,

Sorry to hear about your holding pattern and no clear diagnosis.

I was in a similar situation during the diagnostic process. The neuro could tell from the exam something was wrong, but I didn't have that many lesions, and they weren't in the "right" places. I did MRIs for about a year and a half and finally got a diagnosis.

You need to ask your neuro for meds to help you with your symptoms. even though they won't start you on a therapy, there are meds for relief of any symptoms that are affecting your functioning. they won't completely get rid of the symptoms, but will help. It will make the waiting more bearable.