Hi there, Tinadyke. Echoing what others have said, you really need to see an MS Specialist and get MRIs of both your brain and probably optic nerve as well. And with all due respect to your family optometrist, you might want to find a good neuro-ophthalmologist. This doctor was key for me in both my diagnosis and in helping determining my path forward. I was dxed simply because I had ON -- no other symptoms besides what comes along with that but the way my brain MRI lit up, you'd think that was hardly the case!! This is one of the things that makes this illness so difficult, it is often not black and white, some people are very symptomatic with little or nothing showing on an MRI and then there are people like me.

Well I called my family physician and told him I'm done with my current neurologist. I feel like we are just going in circles. My family doctor tells me he will send another referral to a hospital 300km away. I'm fine with that but then he says they may refuse to see me, and will probably send a referral to the ms specialist closest to me. Thats great but the wait time is 2 years! I'm pretty sure I'm going to have to fall and break something before anymore is done ( my legs keep giving out). The lhermitte's sign is what has me stumped. I don't understand how I can have this now for hmm 6mths maybe?! And have a clean cervical and thoracic mri. If its not structural then what's causing it. It makes no sense from what I've read about it. Thank you all for your replies

A wait of 2 years to see an MS specialist????

That's really unacceptable. There's an MS Society where you are, I think? Have you tried contacting them and asking them to verify that the wait is really that long, and then asking them if anything can be done to change that situation?

I had lots of problems with Lhermitte's sign in the first year or so of MS symptoms, and then never had that problem again. But everyone is different. To this day I find it difficult to tilt my head back or to look up at anything high up. That was often a movement that brought on Lhermitte's sign though it came on at other times too.

Apparently the hospital near me has a ms specialist, but she only works %35 of the time. Healthcare where I live is terrible. I'll talk to my friend who has ms, she deals with the ms society a lot here. Thanks for the tip 😀

Hi Tinatyke

I am very sorry to hear about your challenging symptoms and agree w seeing a specialist along w add'l assessments. The wait sounds unreasonable but hopefully something comes up much sooner.

I have been through the ringer w debilitating physical symptoms and then the road of doctors, medications and treatments.
If you are open I suggest a nontraditional path for your recovery especially if are in between appts.

After the run around and years of pain I healed from within and I believe you can as well.
Our Bodies are sophisticated miracles filled w Complex systems functioning for our greatest good. for example our Bodies let us know when we are hungry, thirsty, tired, cold, hot and even when we have to use the bathroom. Listening closely our bodies also tell us about deep inner wounds and trauma that needs to be tended to.
I've learned that past events and trauma can be stored up in the physical body and can show up as physical symptoms inorder to get our attention.
The process of recognizing the communication as a positive message and looking into the deeper pain within will spark your healing process. Through Loving yourself and releasing emotional blockages that may be at the root.
Lay or sit in quite for about 10min+ everyday for the next two weeks. Focus on your breathe and connecting w your inner self. You can ask different questions each day like "What is at the root of my symptoms?" "Is there something that I need to release?" Is there something I need to change to continue healing? What can I learn from my symptoms/illness?*

*To deal with the source usually requires a life change that ultimately leads to a personal life more connected to the core of one’s being. It leads us to that deeper part of ourselves that is sometimes called the higher-self or the spark of divinity within.*

*Hands of Light by Barbara Ann Brennan

This book will provide a holistic healing process that worked for me and so many around me. Any questions plz feel free to ask/post anytime.

This documentary scratches the surface for the path I'm suggesting for you.
HEAL - TRAILER - YouTube

I've no idea where you are but honestly, it sounds like you might want to think about being done with your family physician!! This is completely unacceptable, truly. One of the most valuable things I learned when I was first dxed was that my main physician is supposed to be my "team leader". And in fact, he became just that. Having seen a complete knucklehead initially, my internist made a few calls and I had an appointment with a neuro-op and MS specialist within a week. I know this is not the same situation everywhere in terms of access but my point is, I honestly believe you should EXPECT MORE.

Yeah it's not that easy where I am to get a family physician. I'm still in limbo. Now I'm dealing with severe headaches. I have 3 different kinds, but I'm assuming they are all connected. The first one starts at the base of my skull and shoots up my head, the next one starts by my ear and shoots into my face( eyes ,nose and jaw) which is the worse pain I've ever had to deal with, and the third is just a throbbing headache. I ended up in the er last week and they blew me off saying it was muscular. I know it was nerve pain! It's made worse by lying down, it keeps waking me up. I have another appointment Monday with my doctor and I'm thinking if he don't help me it will be my last. I'm thinking of leaving the province and stay with my daughter to try to get a doctor there to listen to me before I go mad. That's my vent for the day

That sounds like a workable plan, Tinadyke.

Do you have a dentist you go to regularly? Some of the headache issues just might be related to a tooth acting up. I've had some monster headaches that were miraculously cured by having a tooth treated--a filling, an extraction, a root canal.

Well, my doctor finally listened. I was diagnosed yesterday with trigeminal neuralgia and possibly occipital neuralgia. He's finally going to send me for a mri on my head.