Not MS but Anxiety?!

[duttlyn]

Greetings All:

I'm new to this forum and as yet, undiagnosed. I'm wondering if maybe I'm barking up the wrong tree so I figured I'd go to the source. I apologize if this is long but I'm really struggling and looking for answers.

About 7 months ago I woke up with numb and tingling extremeties. At first I thought I slept funny and maybe it would go away but over the course of a week, and several chiropractor visits (thinking it was a pinched nerve) the numbness and "pins and needles" stayed and started crawling up my arms and legs until it finally hit my face and I knew I should see a doctor. I try to stay out of doctors offices because too often I find they are poorly versed in various conditions yet speak emphatically as if they know all about them. At any rate, I went to my GP who sent me directly to a neurologist. This neurologist suspected Guillan-Barre syndrome or possible MS or possible other things she mentioned. She sent me for blood work (all came back normal but vitamin D was severely low but it is ALWAYS severely low). She also sent me for an brain MRI and then subsequently a spinal MRI. She stated everything came back normal and maybe I had a mild case of Guilliane-Barre because eventually the symptoms subsided apart from some mild numbness in my feet and a tiny tremor that only came when I pinched my thumb and index finger together in my left hand.

I had 6 uneventful months and didn't give any of this a second thought.

Fast forward to about a week ago and I noticed that I was struggling with driving. It felt as if I'd almost lose my place in life and I almost had a couple of accidents before I'd pop back into reality. I just couldn't concentrate or focus and it was almost as if seconds of time would dissapear. I wasn't having blackouts but it would be like suddenly I'd come back into focus just before I ran into something or I'd be like, "holy crap, how am I in this lane." I don't even know if I'm explaining it well but I can tell you I DID NOT feel normal and this is still occurring almost a week later. Then, I was getting ready one morning and I went to put on my watch and touched my wrist and it was as if someone electrocuted me there... it burned. It still does but only when I touch this very specific place on my wrist. Then 4 days ago I woke up with my right hand having tremors. My thumb was literally bopping up and down with large movements as if I was moving it but I wasn't. The huge thumb tremors went on for a  day and with that tremor, my arm felt heavy. Now both my hands are having small tremors but not large and noticeable... just small constant shakiness. Last night my legs felt heavy and I kept having the sensation like my brain was swimming in my head, kind of like dizzy but the world wasn't spinning, just my brain (does that even make sense?!). That is still here today and I just feel woozy and not clear. I've also been losing words, and it's taking me way longer to get out thoughts and process information. Even typing this is a struggle for me and normally I'm a quick and accurate typist. It's freaking me out and it's just not me.

I went to the neurologist today and she was really rushed. I told her what had been happening and she says, "this does not sound like MS"... none of these symptoms are classic MS symptoms and they would be constant if they were MS. She gave me a script for Xanax and told me maybe I'm just having anxiety issues. She also said that although I don't seem like an anxious person, sometimes underlying anxiety you don't know you have can cause problems. She said, there are no lesions on your MRI's so that's not MS. She acknowledged the tremors in my hand as she felt them/saw them but said that it's not an MS symptom and maybe it's the beginning stages of an intention tremor disorder.

So, I guess what I'm asking is, does this sound like MS? It sounds like it to me but I'm not a neurologist. I've heard that MRI's need to be taken with an MS protocol, and not skip slices for them to be a reliable indicator of MS. I'm pretty sure my MRI's didn't meet any specific MS guidelines although they were done with contrast. Should I go see another neurologist? I'm frustrated because I'm just not myself, not sharp or focused and I don't want to sit around until my symptoms are sooo bad before I get a diagnosis. Are there recommended doctors that are great at diagnosing the disease early? Does it sound like anything else you all recognize?

Thank you all for reading if you've gotten this far!

[jensequitur]

This looks like dissemination in space (symptoms in more than one location in the body) and dissemination in time (times when the symptoms were bad, and then they got better.)

They always say go look at the McDonald criteria, because that's what neurologists use when they diagnose people with MS.  So I do, and I have a hard time understanding it, even with this well-written health page:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36

The problem is that you have evidence on the neurological exam that you have a 'clinical lesion' meaning that there's something wrong, but we only know about it from your symptoms.  Your MRIs have been clear both times (even though we don't know what the strength of the MRI was.)  You're going to need MRI evidence that shows that you have damage there.  It's very difficult to be diagnosed with MS with a clear MRI.  

So the question becomes how to better diagnose you - do you need a stronger MRI?  Do you need a different doctor, that specializes in a different disorder?  

Shell had a good idea - going back to your regular doctor, and tell him about the problems you've been having, and whether the Xanax is helping.  I would also find out what the strength was on the MRIs that you were given.

I had constant problems with my legs - my neurologist could see it.  But when he scheduled me for a 1.5T of the spine, it didn't find anything.  The open MRI (.7T!) was even worse.  So every time I came back to the neuro's office, he'd tell me "You're fine!  There's nothing wrong with you."  Finally I found some 3T MRI machines in the area, and asked to be imaged on one of them.  Lo and behold, there were lesions all up and down my spine - some in the upper thoracic cord, and a well-defined one at T10.  

This is why I go on and on and on anon about a 3T MRI.  It makes all the difference.

[sllowe]

Hi there,

Welcome. Has anything subsided since taking the xanax? My thoughts are that the doctor definitely did not dismiss you, or MRIs would not have been ordered. Imaging comes at a price. It's not typical for people to have MS and show no signs via imaging of damage - though it does happen.

You may very well be in the hands of a neuro, and you need to be in with another specialty doctor to get to the bottom of things.

Can you go to your regular MD and say you went to the neuro and MRIs were clear, and then tell doc if xanax is helping?  That's what I would do.

Let the MD run some labs, see if you are deficient somewhere and tell doc you want to feel well :) and go from there.

Sorry you have no answers yet - and for what you are going through.
-Shell

[Mlkjmom]

I am having symptoms very similar. Cognitive issues, weakness and tingling, I have had EMG's NCS, countless blood tests and a clear MRI of my head and cervical spine. And they have yet to diagnose me with anything but multiplex neuropathy.

I am trying to be patient and I know how hard it can be!

I'm sorry I have no answers, but I did want to let you know that you are not alone!

[jensequitur]

I've had some very similar issues - the months leading up to my diagnosis sound very much like the problems you've been having.  I would seek out another neurologist, one who is more used to dealing with people with MS.  Your problems are textbook MS, and if this neuro doesn't see it, I would get away quick.

Another possibility is to ask the neurologist for a neuro-psych exam.  It will pinpoint deficiencies and possibly help with the ridiculous 'anxiety' diagnosis that many people get saddled with initially.

[cjldb]

I am recently diagnosed and I can't speak to some of your symptoms but I did have the cognitive issues. I would leave the house with the intention of going one place specifically and I would turn the wrong way onto the highway 200 yards from my house. Sad thing I would be miles down the road before I even realized I was going the wrong way. I was forgetting appointments and I honestly thought I had Adult ADHD and i kept telling my husband "I just can't manage myself any more, I have too much to do." I felt like I was living in a fog and I was paralyzed watching the world go on around me because I didn't have the energy or ability to jump in and participate, if that makes sense.

Then came the horrible dizziness and the weird waves of weakness down my left side. Typing can be an issue for me to and it's very frustrating because I teach computer classes. That lasted a few weeks before I started fearing I was having heart problems. Eventually I began to slur words. When I finally saw my PCP I was having Trigeminal Neuralgia. She sent me for an MRI that day. I showed 3 enhancing lesions and ended up with a positive spinal.

Although I definitely didn't want an MS diagnosis and it completely rocked my world because it all happened so fast, I really consider myself very fortunate that from my first visit with my PCP it took less than 3 weeks to get my diagnosis. I see all the stories of people fearing and waiting for so long and my heart goes out to you all. Hang in there, you know your body, just as I knew mine...something just wasn't right. Eventually you'll get your answers.

[LisaJF]

I want to first welcome you to the forums!  

Now I dont want you to think no one has read your post -- I'm sure they have and if they are like me, it is something I have to digest at first because you have a lot in there!  And I am thankful that you are willing to share your experiences with us.  But in order for "ME"  to give an appropriate response and focus on your questions and not get sidetracked, I have to absorb all of this information first.

However, I am sure there will be someone who will come along and have a ready response quicker than I can do!

One thing I will say is this:  YOU are your own advocate.  No one else is going to step up to the plate other than yourself to push forward and the drive to keep on going to find answers as to why you're having the experiences you are having.  

IF you are not satisfied with your answer with the Neurologist, then I'd say it is fine to get a second opinion.  Especially if you are continuing to experience your symptoms.  

Your neurologist appeared to be a bit dismissive because your MRI came out clean.  There are people here diagnosed with MS without lesions on their MRI.  There's a great link to our forums health pages you will find most interesting!

Here's the link:  http://www.medhelp.org/health_pages/list?cid=36

Now there's a plethora of information in there!  Three pages worth!  But so informative!

I'll be back (doing my Arnold Schwartzneggar accent).

Lisa