Limboland

[sixdeep357]

Hi Everyone,
Recently, I've been dealing with a lot of MS related symptoms. My Dr. ordered an MRI and the results back negative. I'm relieved, but at the same time, confused, because I still have all these symptoms and no diagnosis.

I know muscle twitching is a symptom of MS, but does anyone know if bilateral twitching is common with MS? (both calves, both forearms, etc). I've had bilateral calf twitching for 20 months. My neuro originally said it was BFS. I know with ALS, twitching usually starts in one spot and moves over time, along with atrophy, weakness, etc. Just wondering if MS is usually isolated twitching as well, or if it can occur bilaterally.

I also have chronic dizziness and other visual aura's but no optic retina. I visited an ENT and he said I probably have Migraine Associated Vertigo, which is causing the dizziness.

3 days ago my left foot started feeling weak. Actually, the Tibialis Anterior muscle, the one that runs along the front of the shin and holds the foot. My foot hasn't actually dropped completely, but I have to really concentrate to keep it up when I walk. It only seems to be getting worse by the day.

I also see visual snow. It's a sign of optic neuritis. My MRI ruled out optic neuritis and so did my visit to the eye doc. T

I'm not really sure what to do next. I'm going back to my GP Monday. I had an EMG when the muscle twitching started but that was over a year ago. Maybe I need to be checked for ALS again now that the foot is dropping? My hands are stiff. Thought I had carpel tunnel. It's just so crazy that all of this is going on and my tests came back negative.

Does anyone have any thoughts?

- Lost, and scared in Limboland

[addicted2harleys]

Good girl!   Yes, get all of your records together.  If you want, go look at my pictures.  I have some there of how I made my medical record book.  May help you with ideas.  You should make a timeline of your symptoms since they first started.  Have both of these things complete by the time you see a new neuro.  I kinda had a feeling you were not too trusting of you present neuro.  

I have seen some things with the Lyme test.  I can't remember exactly what I was seeing.  But I recall something about false negatives, I believe.  You might type in Lymes at the top right hand side where it says search this community.  It will pull up posts about the Lymes testing.  Might be informative to you, especially since you had a tick!

Well, you have some things to get you started.  :) Post again if you want to talk about something or have any more questions.  This is a great group!

Addi

[sixdeep357]

Sounds like you've done well sorting through all of this this Harley. I wish I could say the same.

I don't like my neuro. He doesn't seem to want to deal with me. He told me, "People leave my office every day without a diagnosis." He said that he too suffers from muscle twitching and dizziness. To hear that my neurologist has similar symptoms and is clueless, really shattered my trust. First thing I'm going to do is get a new neuro that will work with me.

I also don't have my MRI results on disc nor do I have my EMG results. I don't have any of my blood work either. I go to my GP Monday and he has access to the EMG and the labs. I'm going to get that info. I'll have to go to the hospital for the MRI but I'm going to do that too. Great idea.

I have had a lyme disease test. What's crazy is I pulled a tick off my stomach about a month prior to the muscle twitching. I never got a rash or a fever. The doc did an lyme antibody I believe. It came back negative. (I was crushed because I really thought that would solve the problem) I've since read all these conspiracy theories about lyme disease and how the tests fail to pick it up, etc. I just hate to get sucked into all that.

Thanks for the input and the help! Good luck on your results!

[addicted2harleys]

Hey six deep-

It sounds like your MRI was done properly.  As far as it being on a 1.5T doesn't necessarily mean that it wasn't good enough.  They may have updated software.   There is a lot of debate on whether the 3T is better.  I tend to personally sway for the 3T because the lower Telsa didn't do anything for me.  My last MRI was on a 3T.  I have not received the results on it yet.  

Okay, another question.  Do you believe in your neuro?   Have faith in him, trust him?   If not, it is time to find a new one.   You really need a neuro that you believe in and works to help you find answers.   There are many people on this list that have gone through several until they find one that is helpful...including me.

I am sorry, I do not know what BF is....or Isaacs or Kennedys.  I do know there are many many other things that can be tested for you still.  Have you been tested for Lymes?  Vitamin deficiencies?  Lupus?  Hard metals?  Have you seen the health page we have on all the mimics yet?

Oh, before I forget...did you get copies of your MRI?  The report and a disc?  If not, please do so.   And a copy of your EMG and any other tests you have had.  Start keeping records of everything.  This is mucho importante!

I don't know the results of my MRI yet.  Yes, I have many symptoms pointing towards MS.  I have had loads of mimics ruled out.  My neuro exams show weakness and deficiencies.  My pcp believes I have MS.  So does my eye doc and pain management and physical therapist.  I just fired my neuro and got a new one.  I finally found the right neuro.  So I am hopeful for a diagnosis from him.   Fingers are crossed.  

Addi

[sixdeep357]

Hi Harley,
I have seen a neurologist twice. Once, at two months of twitching. I had no signs of weakness. He performed an EMG and it came back clean, accept for what he thought was a pinched nerve in my back. He thought it was odd that I wasn't in pain. I'm still not sure what to think about that. Otherwise, he said I didn't have ALS, but diagnosed me with BF. (excluded the S). I saw the same neurologist again after my MRI, about 3 weeks ago. He did an exam...tapped my knees, had me squeeze his hands and walk around, etc. 3 weeks ago, I didn't have the foot drop symptom. He said I needed to see an ENT.

The MRI was done on a T1.5. I wanted the T3, but that's all the hospital I went to had. They assured me it was fine, even though I've read posts on here that the T3 is better. The technician even tried to tell me that it's still debatable whether the T3 is superior to the T1.5. The MRI was performed on my brain and spine (not sure which spine designation) with and without contrast. It was done with the MS protocol. I specifically asked for that and the technician said he could add that protocol even though the doc didn't specify it...only a few more shots and it wouldn't change the cost/insurance. (At the time, my doctor wanted to see if I had a brain tumor. That was his point of doing the MRI)

The reason I'm concerned with ALS is basically because it's a possibility, just like MS, etc. But yea, my twitching seems to me more aligned with MS as opposed to ALS. At least from what I've read. As Twitchychick said, Isaac's is interesting too. I've done a little reading on that as well as Kennedy's Disease. My neuro told me I don' t have any of those, but he declined to say what I do have other than twitching and chronic dizziness. I know Isaac's and Kennedy's are extremely hard to diagnose. I'm not sure what my neuro would say about the foot weakness because that's a new symptom. This is definitely a case of clinical weakness too and not perceived. I almost feel like I tore the muscle, but there's no pain. It just doesn't work. It's very strange.

No, I've never gone to an ortho. That might be my next step if I continue to have problems walking.

BTW Addi - did your MRI come back negative, and yet you have all the MS symptoms too? Have you come any closer to your diagnosis?

Thank you

[addicted2harleys]

Hey there, sixdeep-

I am undx'ed at this time, but I do have a few thoughts.  First off, welcome to our forum.  You have landed in the right place.  There are a lot of really great and informative people here.  We are not doctors and cannot diagnose anyone.  But there is a wealth of wonderful advise and guidance here.  I do welcome you to check out our health pages.  Up in the right hand corner is a link.  There is bunches of really good info on so many different topics.  I urge you to go through them.  

Now for my questions.  :)

Are you seeing a neurologist?   Have you had a complete neurological assessment done on you?  I don't mean someone checking your reflexes.  I mean a doc asking you to do many things with your limbs and walking.  

Do you know what magnet strength of the machine your MRI was performed with?   And what part of your body was the MRI performed on?  Brain, c-spine, t-spine?

Is there a reason you are concerned with having ALS?   Regarding the muscle twitches.  We were just talking about that on a different thread.  I get them on both sides.  Both feet, both legs, both hands, both hips and knee area.  

The problems you are having with your foot.  Have you seen an ortho yet?   That is what I did when I started having probs with mime.  I now wear a brace that helps lift up my foot when I walk.  

I have been having eye probs for quite a while now.  I don't even know where to start on that topic.  Sorry.  :/

I am sure others will pop in and give their opinions as well.  In the mean time, go check out those health pages!  :)

Addi

[twitchychick]

There is another forum, not on medhelp I think, that is for Isaacs Syndrome.  Similar to BFS, but with more symptoms.  You may want to check that out.

Also, are you currently taking any medications?  When I was taking Topamax, Wellbutrin and Effexor, the twitching was almost nonstop. After I slowly discontinued those, I started Nortriptyline.  It has really helped the twitching and pain.  Not gone, but better.

Hope you get some relief soon.  

TC