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So confused

Hi I am new. Please bear with me. It’s all so confusing and I’ve learned the neurologist even the MS specialist don’t have answers. Unless your brain is lightning up like a Christmas tree or other undeniable symptoms. I say all of this before I tell you my situation because it relates back to me and my helpless,confused and lost state

in 8/2015 I had an episode that I knew I needed a neurologist. I had been feeling like my thoughts, concentration and just cognitive skills in general were not right. My balance and walking were not the same. I was a walker but my legs hurt, spasms unbelievable. I found a neurologist is is affiliated with my hospital but had private practice. After giving her in writing my symptoms and serious of mri’s brain scans , neck and spinal mris’s. A lot of symptoms of MS are same as others such as back

in beginning of November I was diagnosed with MS. Put on Copaxone then after spinal tap which showed Giuliano-Barres syndrome another autoimmune disease. This was treated with 6 mos. , 3 x a month 5 hrs each time of infusion (plasma intravenous) treatments. So enough of this let’s she was making a lot of money on my treatments through insurance company. And I had to ask her about the MS

Went to another neurologist very good extensive examination, sent for more MRI’s of brain, back and neck. After all this he diagnosis me with MS , thought my former neurologist should have done more test before infusion treatments. Ok ? However, he referred me to an MS specialist in the same neuroscience Bldg different floor.

3rd Neurologist he gives me 15 serious 15 minutes of his time looks at Mri’s No other test no exam no cognitive skill test , nothing. Said my brain MRI is abnormal but not MS , he sends me for more of test I’ve taken too many times and neurosurgeon. In 6/2017 I had 2 lumber spinal surgeries. So here I am almost 3 yrs later. Now I was told I have to keep up with mri on brain for any changes. I have given up.

I’m so sorry. If you guys don’t read this book I understand. Thank you

Oh by the way my symptoms are the same even worse but back is a little better…

I have no idea how to help you but goodness me! How awfully confusing for you :frowning: I hope a more experienced member may be able to help - I’m still in the possible/pre dx stage.

Glad your back is a little better at least, best wishes to you

keep on seeing your GP because a GP can write to a neuro asking for more clarification.

it sounds like a proper muddle and mess.

hope you manage to get through this.

carole x