New ms?

[Tillyonom]

I am new here... but you all seem so supportive.

Just wondering... I had a fabulous doctor (but an ALS doctor because my grandfather died of ALS) and thankfully I do not need him.  After testing he referred me to an MS doctor.  She was a little dismissive.  I have two c-spine lesions.  One typical of ms and one that leads from c1 to the medulla.  There was also some stuff in my brain but nothing too definitive.  So maybe just age related.

I had many symptoms last spring (including foot drop which I still have after an hour walk) and then a numb right side of my face in the fall.  My LP came back positive for the IGG index and the protein was high.  A friend came over tonight who is a top orthopedic doctor and I talked about my appointments which were confusing to me and he said I had clonus and I already knew I had hyper reflexes.  I feel like I am psychosymatic because I feel like my right leg is tired since my first doctor said it is weak.  She said " transverse myelitis" and no need for meds.  Only 20% chance of ms.  I thought I had ALS so at this point ms seems ok to me.   I have been tested for everything...lupus, b12, cancer...

I have two sweet little boys so I just want answers of course.  My current ms doctor is the director of the ms clinic but my friend (who got me into the very booked ALS doctor) is going to check into other doctors.  I have more MRIs scheduled for March.  My current doctor did not seem interested in me.  She could be wonderful though so I am not going to dismiss her.  I am very mobile and active but I know my body and things are not right.  My mom has periphrial neuropathy and gpa ALS so lots of neuro stuff going on.

So it seems no obands no ms.  No brain lesions no ms.  Does medulla not count?  So confused and obsessing!

Any thoughts?

Tilly's mom

[anon07072023]

Welcome to the forum.  If I were you, I would pursue the MS.  

I was also diagnosed with TM initially.  Besides my spinal related symptoms, I also had non spinal related symptoms AND I continued to progress.  After a year and a half I transfered to an MS Ctr. The neurologist there said that beside the 1 spinal lesion and 2 in my brain that were initially found, that the radiologist & neurologist missed 4 other brain lesions, and 3 TI black holes, & another spinal lesion.

Good luck!
Kelly

[LilMinnie]

Hi and welcome! :)

I read that there was some stuff in your brain but nothing definitive. I was told by my first neurologist that my brain MRI was normal. After my second neurologist reviewed it, he said there are two lesions. One had been noted by the Radiologist, and neuro two found the other.

Do you have copies of all of your scans and the reports? I was advised here early on in my journey, which began early last summer too, to get copies of everything and I am glad I did. I found another person's information entered into my online record, for example, and my year of birth was wrong on my Ophthalmologist report by ten years. Something may be more age-related for someone who is 56 vs 46, which is how old I am.

I guess you've already found out the diagnostic process can take a long time unless the stars are perfectly aligned, so to speak.

I'm sure others will be along to welcome you and give more input.

All the best,
Minnie :)