was sure it was ms, now I'm confused

[Jayman2016]

Hello everyone, I am new around here. I'm 34 years old male.

In 2010 I had a sudden onset of symptoms my legs got weak, numb, and pins and needles, my vision was blurry. I was unable to hold a steady gait. I was using my walker from my knee surgeries. I had a brain mri it showed non spescific lessions, but not enough to confirm ms.

After about a month it went away. I thought probably some weird type of infection. Then last year the symptoms came back this time much worce. It started in the spine with massive electric shocks shooting down the spine, my vision went blurry, starting at my feet and up started going numb. It ended up being my entire waist down. My left arm went numb, but not quite as bad as the legs were. My chest got tight like I was wearing my shirt too tight.

My muscles started getting very tight, it started to hurt. As the feeling was slowly going away it felt like going to the dentist and the local was wearing off about half way and it was half numb and half hurting. That is how it felt for a day until everything just went numb. My gait was totally thrown off. I could barely stand. I was falling to my side. It went as high as my mouth and the back of my toung was numb. The thinking the first time this happened was infection so I checked my temp every day and it was normal.

Oh I also was totally tired. I'd never been that tired a day in my life. These symptoms hit June of last year. It last about a month. Right before it went away my left eye got so blurry I think I lost all vision in it for a few hours maybe a day. The first time I went to the er and they just treated me for infection. This time I went to my family doc and asked for a referal to a neurologist. My family doc said it doesn't sound like ms, he said "ms shouldn't cause any pain at all". He wanted to send me back to a rhumtoid doc but I wasn't having it.

So I finally got the referal to a neurologist. Sadly I never got in while I was having symptoms, being a new paitent it took a while to get in. All my symptoms were gone by the time I saw her. I passed her neurologist exam. She did the nerve function test and it showed the old neurophay from my feet that I'd gotten during knee surgery. She said it was all neurophay. I didn't buy it. The neurophay is in the feet, from the straps on too tight. It's minor and never been anything buy annyoing. She ordered mri's but were not contrast so I refused to do them.

I saw someone else who said I just needed to see a physologist. She said if I wanted a brain mri I'd be paying out of pocket, she said I have no medical reason for needing one. So I waited 3 months to see what was supposed to be the best neurologist in my area. During those 3 months I was noticed minor burst of symptoms. One or two things from my big attack would bother me for a week or so. If just never felt like I went back to being normal.

That neurologist finally did a mri. It came back a argument between the radiologist and the neurologist. The rad saw another small non specific lession but it had gotten bigger since the first time. He said it could be a sign of a demlynating disease like ms. The neurologist didn't agree, not even able to see anything, thou I always wondered if he needed his eyes checked it he was old and very thick glasses. So the neurologist charted normal. He didn't really know what to do with me.

I looked around found a neurologist that is not know for giving up easy. He redid the brain mri, he said he didn't see anything, a c-spine which was normal. He wanted to recheck me for infection and diebities which is what they always do when I complain. I wasn't accepting that I wanted to t spine mri, which just came back today normal. I getting frustrated demanded the lp. They did the lp on the 10th of this month. I have yet to get the results back from that.

My current neurologist has told me he is 100% sure I don't have ms. I asked him is it possible that it's just too early in the disease and their either too small or too dark to show up on a mri. He told me maybe that was true 30 years ago but modern day mri's don't miss lessions.

This summer my old symptoms came back, just not as bad this time. It started with tighness in the neck, I thought I just slept on it wrong. Then my muscles in the neck, upper back, and left arm got really tight. That's typically for me. Even since 2010 my left has always been weaker then the right. When it didn't go away I went to the urgent care. The doc said I didn't hurt anything, xrays looked fine. I went to a chrio, nothing he did helped.

Then I started getting a ton of electric shocks coming from the high middle, maybe low neck area. Which massive electric shocks going down my arm. It felt like lighting bolts were going to come out of my left hand. I called my neurologist I really wanted him to see me like that but the best I could get is july 12th and my symptoms are already fading. Be long gone by then.

I called today when I found out my t spine was normal. The nurse said my lp was taking longer then it normally does. I am hoping that means something good. I have felt for so long that I had ms but the docs don't agree. I am not sure what to do. It sounds like my current neuro is about ready to give up on me.

Has anyone else gone through this? Is my neurologist right to say that modern day mri's don't miss ms. Is their any other line of docs I should go down. I am looking for any suggestion I can get, I'm not sure what more to do at this point.

At one point when all this started they thought it was lymes. They had a lyme lit doc treat me with the right antboitcs for 6 months. I've not been bit by a tick in the last 5 years and unless lyme can go quite for 5 years and come back and only bother the nervous system. I am not really planning to re see any old lyme docs. Thank you for your advice. I am really tired of all this.

[euphoniaa]

Hello Jayman and welcome! FYI - I just edited your post into paragraphs instead one big block of type, because many of us have vision problems.

I don't have time go through your questions to answer at length yet, but now that your post is spread out and easier to read, you should have some responses soon.

In the meantime, feel free to look over the other posts here at ThisIsMS. There's a lot of information here. Good luck!

[Scott1]

Hi,

You clearly had an event of some sort. If I was you I would go first to someone who can do deep tissue massage and see what tight spots they can dig up and release. Then I would go to a few pilates sessions and identify which muscles groups are weak and need work.
This all began when you were using a walker after knee surgery. If you already had some weak spots it would have been easy to do some damage at that time.
I think you have had some muscles pull on your spine and trigger the sort of pain you experienced. If you have locked muscles in the wrong position and they won't release then you will feel it somewhere else.
Medications won't fix it. You will have identify the tightness and through massage and appropriate exercise (eg pilates, yoga etc not gym work) retrain your body.

Be glad you don't have MS.

Regards,

[lyndacarol]

Thank you for your advice. I am really tired of all this.

Welcome to ThisIsMS, Jayman2016.

Each of us here at TIMS has a unique set of symptoms, experiences, and opinions. My ideas are currently focused around vitamin D. In January, I had the 25-hydroxy D blood test and my result was low – frankly deficient – at 24 ng/mL. (It is a good idea to request your own copy of any test results – it is important to have the actual numbers.)

Over 1/2 of the world's population is deficient in vitamin D. One of the common symptoms of a vitamin D deficiency is muscle weakness, cramps, and muscle pain. In fact, "according to Michael F Holick, a leading vitamin D expert, muscle weakness is usually caused by vitamin D deficiency because for skeletal muscles to function properly, their vitamin D receptors must be sustained by vitamin D."

Other symptoms common to a vitamin D deficiency include general fatigue, joint pain, and MANY others, since vitamin D is needed by every cell and every system in the body – neurological system, endocrine (especially the thyroid gland) digestive system, etc..

I suggest you call your GP (or any specialist you see) and request this inexpensive vitamin D test (the "25-hydroxy D" test).

By the way, I agree with your neurologist that all testing today is probably much better than 30 years ago.

[Jayman2016]

Thank you for your advice. I am really tired of all this.

Welcome to ThisIsMS, Jayman2016.

Each of us here at TIMS has a unique set of symptoms, experiences, and opinions. My ideas are currently focused around vitamin D. In January, I had the 25-hydroxy D blood test and my result was low – frankly deficient – at 24 ng/mL. (It is a good idea to request your own copy of any test results – it is important to have the actual numbers.)

Over 1/2 of the world's population is deficient in vitamin D. One of the common symptoms of a vitamin D deficiency is muscle weakness, cramps, and muscle pain. In fact, "according to Michael F Holick, a leading vitamin D expert, muscle weakness is usually caused by vitamin D deficiency because for skeletal muscles to function properly, their vitamin D receptors must be sustained by vitamin D."

Other symptoms common to a vitamin D deficiency include general fatigue, joint pain, and MANY others, since vitamin D is needed by every cell and every system in the body – neurological system, endocrine (especially the thyroid gland) digestive system, etc..

I suggest you call your GP (or any specialist you see) and request this inexpensive vitamin D test (the "25-hydroxy D" test).

By the way, I agree with your neurologist that all testing today is probably much better than 30 years ago.

vit d, b12, infection, diebities, and thyroid have all been tested more then once and all normal

[NHE]

vit d, b12, infection, diebities, and thyroid have all been tested more then once and all normal

Welcome to ThisIsMS. Do you have your B12 test results? For anyone experiencing neurological symptoms, you'll want your B12 to be between 600-1000 pg/mL. Did they also test red blood cell (RBC) folate, homocysteine and/or methylmalonic acid (MMA)?