Real discouraged

[unmaestro]

No one responded to my first post, so if no one responds to this one, I'll take the hint.

I've been dealing with tingling/burning/itching/blurry vision/extreme fatigue/shock down body when I bend my head over/facial pain when I exercise/dizziness/seeing glitter and flashing lights/eyes move by themselves from side to side for about a year now and I don't know what could be going on. My MRI showed up normal, and it was with contrast.

My primary care physician told me that if something gets really painful or it scares me enough to go to the ER and they'll begin testing immediately. I have a neuro. appt. Feb. 26th, but I'm afraid nothing will be accomplished when I go. What is your first neuro appt. like? Do you start testing that very day? Or do you just sit down together and talk about your symptoms.

Any help would be greatly appreciated. I'm really upset because I feel like this is going to take forever.

[unmaestro]

Thanks to everyone for the sincere comments! I will take them all into account.

[Deb61]

You do indeed need an MRI of the spine.  You also need to see an opthalmologist about your vision issues.  Plus, your MRI of the brain may not have been done on a strong enough machine or with MS protocol (too thick of slices).  Just because it was done with contrast doesn't mean that MS protocol was used.  My first MRI before my diagnosis was done on an open machine which was weak with thicker slices.  When I went to the neurologist, he ordered an MRI which was done with on a stronger 1.5T machine with MS protocol and lesions showed up.  

Be sure to write down what you want to say in a timeline, so you don't forget the important things.

[candy158]

Don't take offense to the group here, they really are a wonderful support and they have answered lots of my questions.  I am new to the forum, but am excited to see and talk to people who are mostly going through what I am too.

Neurologists seem to take FOREVER to give you a diagnosis, and many many times you will move from Dr to Dr.  I am actually on my 7th neurologist, and am being scheduled for an 8th in Vancouver at UBC.  

Keep you chin up, and don't let them get you down.  I know it isn't easy, I'm still going through hell with them.  But, know there are lots of people who care about you, and it nice to chat with people who do actually know what you are going through.  

Take care, and keep in touch OK??

[tarter]

To unmaesto:

Hi and welcome to our forum your symtoms we all reconise to well sadly and also the delay in diagnosis. Two yrs on from first neuro assessment and still waiting there are many of us
here called limbolanders!

Hope you stay around and get some answers from others on this forum.
Sorry i missed your first post ,some days difficult to go on computer with eye discomfort and other symtoms.

Warmest welcome to you tarter

[jensequitur]

Hey, make a timeline of your symptoms, so that you can have something to refer to when you talk to the neuro.  That way you won't forget anything.

I get a black spot in my right eye, that flares white in the center.

[unmaestro]

I haven't gone to an eye doctor or anything. My primary physician set up an appt. with a neuro. for me, so that has been the next step. I have this terrible feeling that I will forget to say something or that the neuro will think I'm making it all up. I feel like my family feels that way, too. Everyone besides my mom, anyway...haha. Since my MRI was normal (it wasn't taken of my spine), I have a feeling he or she will end up diagnosing me with fibromyalgia because I have a lot of those symptoms according to the mayo clinic and xxxxx.xxx. I have L'Hermitte's sign, though. So I don't know what's to become of it all.

Do any of you see glittering/floating objects when you look at your computer screens? haha..:) I'm sure some of you do.

[supermum_ms]

Sorry about missing your post.

I think what happens at the appt will depend on where you are, who you see and if your sx looks interesting enough to the neuro. I'm in OZ and how things work here is often different to the states, one thing that stands out to me is that you cant get an brain MRI without seeing a neuro first.

My first neuro appt took 8 weeks to get, it was over an hour late which seems average, so give your self the extra time. Brief chat about what was happening, how long it lasts, how often, if the sx i'm explaining resolve etc. What if any dx i've already got eg. hypoglycemia, diabetes, migraine, lupus etc

Basic physical exam of checking eyes, walking down the hall (jerky tremors, wobbly) no heal to toe walking, which i wouldn't of been able to do anyway but that seems a common test. The standing and closing your eyes test for me ended up being sitting and closing my eyes with the neuro catching me as i went backwards.

Lying down whilst he checked my reflexes, it was strange cause it was with out warning, rappidly twisting and bending my legs, one at a time. Heel to shin test where you run your heel down the opposite leg shin, which i couldnt do very well. Sitting on the edge of the bed whilst he whacked under my knee caps for their reaction, all very basic.

Whilst i was distracted and looking away he lifted an arm, watching the tremor, see if the arm drops, checked my blood pressure which is always normal when i'm sitting. The only other test i can remember is the touching your nose to his finger, which is to see intention tremors, which i had at the time but didn't show its self, if he'd asked me to eat with a fork he would of seen me stab my self but the 2 goes wasn't enough that day.

I do know all the names of the test but they slipped out of my brain, sorry about that!

Only after his testing did i get sent for an MRI of my brain and spine, he was nice, caring and attentive, he stated he wasnt convinced yet that it was MS but the MRI was just the beggining of the test he wanted to run. I should say he was horrid, and angry at me for wasting his time when I went back for the results, the MRI didn't yeild what he expected to find, no doubt he thinks i was making up the parts of the tests i failed, not true!!!!!!!!!!!!

I've not gone back even after he sent me for an LP and psych tests (2 psyc test normal), in fact i havent seen a dr since, which i know is really really stupid of me, but i just couldn't deal with the stupidity of continually defending my mental health when there was nothing wrong with it. In the end i needed a brake from the merry go round, do everything i needed to do so i could walk and talk whilst i was waiting the 2 months between each test thankfully most of 2009 is over and i'm mostly me again.

Hope its helped you get an idea of what you might experience.

Cheers........JJ  

[Wobbly]

Hi there.. I wanted to add a Welcome to the forum and we understand what your going through.  it can sometimes take quite awhile to find answers to your questions and I hope it won't take too long.  It took me approx 4 years of symptoms and test to get my answers.  

Have you had all the blood tests to rule out mimics or find other reasons for these symptoms.  They could be something other then MS or it could be MS... have you seen a Rheumotologist yet?  

Have you gone to see an eye Dr for your vision problems?  Did they say anything?

there are many tests, and sometimes it happens quickly and other times not so quickly.  

Don't forget to write down you timeline for the Neuros or any other Drs you might see.  also, ask for copies of any MRI's, reports, blood tests... and keep it for your records.

let us know how things go and hang in there.... try not to worry to much.  and go to the ER if your in pain or feel badly.

take care
wobbly
dx

[HVAC]

Every Neurologist is different. It also depends on the neurological exam which they should do. See the health pages. They also should take a good history. health pages talks about doing a time line. I let the Neurologist do his thing and at the end I talk, ask questions. They each have their own way of doing things. So many people come in and overwhelm them with comments and questions. With the way a Neurologist's brain works I think this is annoying to them.

From what they find they may want to further tests. Sometimes they do a wait and see approach. I went every six months having various tests in between. They also might want to do a lot of blood work to rule other conditions out.

I had 4 MRIs, Evoked potential, SSEP, Baer, went to a Neuropthamologist, had tons of blood work, a lumbar puncture, and EEG in the two years leading to my diagnosis.
Eveyone is different.

Good luck,
Alex

[Charley123]

I'm sorry you didn't get a response to your other post.  It happens sometimes.  I hope you won't take it personally.  

Everyone has different experiences at their first neuro appointment.  Usually testing gets set up soon after the visit if the neuro thinks it's warranted. You sound like you have symptoms that are very familiar to many people on this site.  I hope you get some answers.

Sometimes it does take a long time to find out what is wrong and sometimes it doesn't.  I hope you will continue to post here with your questions as there are many people here who are quite knowledgeable and most supportive.  

I've been looking for answers for a few years and can't say enough for the caring advice and support here.  Keep in touch, Charley

[unmaestro]

Hope I didn't sound rude! I just feel like I'm going nutso.

Sometimes, I also get a headache in my left eye and it feels cloudy..like something's in it.

[Lulu54]

I just bumped up your other post.  I'm glad we really didn't ignore you - we try to greet everyone who comes through here.

I posted a reply on your other thread but here's a link again of how to prep for your neuro visit

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36

be well,
Lulu