At a loss
 

Hi, just looking for some advice about what to do next. My best friend has ms and she keeps telling me it sounds like I have it but I'm getting no where with my neurologist. Currently I have muscle twitching all over my body, Numbness in my feet, back, legs, fingers and saddle area. I've had drop foot, which has resolved besides the numbness. Forget words and have trouble explaining things. Sometimes my legs just give out. My balance is terrible. Muscle fatigue. Lhermitte's sign for the past 6 months. Muscle problems with my eyes including double vision at times. I've had a clear mri on my cervical spine and thoracic spine,Clear ct scan on brain, and lots if blood work. B12 fine. I've also had nerve conduction study done with came out fine. He's going to redo the nerve conduction study within the next few weeks. I also have pain in the center of my back at times that wrap around to the front. Any advice would be appreciated. Thank you

Welcome Tinadyke. :Wave-Hello: Someone will be along.

OP: I travelled with my sister who was somewhat dx'd with MS in her early 20's, nothing was definite with her but one doc said possible MS. She went on for many years doing her stressful job and the MS came on with a vengence yrs later.

The only things I can mention to you and we tried to get to her was majorally control sugars/carbs, she did not do that. She loved her sugars and I was not her doctor but I have a good feeling docs didn't talk nutrition and cutting out sugars. I even brought out to CA to talk to a nutritionist who also had MS but I don't think the visit did a lot of good. Addiction is horrid.

She was given so many drugs from transfusions, infusions, orals -- you name it she was always telling me about new drugs--- too too many I believed.

And her job was Very Stressful, poor sleep and I know that played a Huge Factor.

Vit D is critical and many supplements are vital too. I would consider Grape Seed Extract and you can do a search of it and MS.

She died too young and I really blame all the doctors and the lack of info on nutrition.

This is my advice on what I eperienced with my sister, and I'm sure others here struggling with MS will come in.

There are useful sticky thread at top of the MS forum page that have loads of info..
You can also use our search tool - link is in my siggy area below -to find past posts with information..

Hi Tinadyke,

I've had MS for over 40 years and have been following posts on MS message boards for 20 years. I hope you won't turn out to have MS but I am surprised that you mention a CT scan of the brain and not a brain MRI.

A CT scan can reveal many things but it is a brain MRI that is usually done, along with the 2 spinal MRI's you mention having. I hope you will ask your neurologist about this.

You might want to find a neurologist who is also an MS specialist.

If you have MS, the doctor will probably recommend that you start on one of the disease-modifying drugs (known as DMDs or DMT for disease-modifying therapy) as soon as possible. There are over a dozen of them now.

There have been many studies of diet and MS, but so far no diet has been shown to have an effect on MS although making sure that you're getting the nutrients your body needs, in the right proportions, is always important for general health. You want to stay as healthy as possible if you have MS because infections can cause flareups.

People nowadays have a nearly-normal life expectancy with MS, partly thanks to the generally better care for infections and other complications and partly due to the use of the disease-modifying drugs. Their effect is modest but it is real.

I hope you'll get some satisfactory answers soon!

Thank you all for your replies. Yes I was wondering about the ct scan myself. From everything I've read they only use mri's of the brain. I will mention this when I go back. I also just came from my optometrist ( he use to be a family doctor)on a follow up from having weak eye muscles, and he told me that sometimes you can have an mri and nothing will show up and do it again in 6 months and there are lesions. He said if I'm having lhermitte's sign there is definitely something causing it. Unlike my neuro who said it just happens to some people for no reason. Think I may just get a new neurologist because I can tell he's soon going to give up on me.

Your optometrist is right about MRIs but the brain MRI is the standard test for diagnosing MS, though it is sometimes hard to diagnose and people wait years before they're diagnosed.

Optometrists are fine for glasses prescriptions but they aren't qualified to diagnose and treat eye disorders. I hope you can see an ophthalmologist, who might want to do a visual fields test as well as a couple of other tests to get at the reasons for your double vision.

Sorry I meant to say ophthalmologist. He just looked in the back of my for optic neuritis, which was fine. He said he's going to leave it for the neurologist to figure out why I'm having trouble with my muscles and nerves. One of these years I will have it figured out haha.

Every time I've had an optic neuritis issue, a visual fields test has been done in addition to the eye exam.

You watch a dot of light that moves around on the screen and you signal when you're seeing the dot. Then your visual fields are plotted on a chart. They look for "holes" or "blind spots" in your visual field, and these can show up in either central or peripheral vision, or both.

Another test that can reveal optic neuritis is the visual evoked potentials test. You stare at a checkerboard pattern for a while. This test is usually ordered and done by a neurologist, not an ophthalmologist.

If the doctor looks into your eyes, the optic nerve can be visible, and some abnormalities in it can indicate optic neuritis but I'm fairly sure that these other tests are done to establish that diagnosis.

Your ophthalmologist was willing to put your case in the hands of the neurologist, who might want to order these tests.

If you aren't having eye symptoms, there may be no reason to do further tests.

I subscribe totally the words by @agate, I think you need a brain MRI looking for demyelinating lesions, but, even if lesions are found, the next step would be doing a lumbar puncture (spinal tap) to dismiss other diseases.

MS can have a lot of different symptoms, but a lot of diseases can have symtomps that resemble MS.
I was dx with MS last year, and have been on Tecfidera 1 year so far, no new lesions and no activity on the last MRI, so I'm doing good.

Good luck with your dx, we're here to help!

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.