BTW, here are the symptoms the nero is talking about.......


Blurred vision, eye pain - comes and goes
Jerky Eye Movements - comes and goes
Flashing lights in eyes - comes and goes
floaters, spots that move on eyes - all the time
Muscle weakness and numbness - most of the time
Spasms, Cramps, Involuntary contraction of muscles - most of the time
Restless Leg Syndrome - most nights
Shaking - all the times, is worst at times
Partial numbness, tingling, buzzing and vibration sensations - comes and goes
Nerve pain and electrical shock sensations - comes and goes
Odd tingling feeling over body, like when you get chill bumps but I don't get "the bumps"
IBS
Short-term and long-term memory problems, forgetfulness - all the time
Anxiety - comes and goes
Slurred speech and "loss of word" (can't say a word I'm trying to) - comes and goes
Increase in severity of symptoms with heat
Body hurts when cold
Swallowing problems - comes and goes
Not sleeping well - most of the time
Cold hands and feet - most of the time
Fatigue - most of the time
Ears ringing - almost all the time, maybe all the time now
Headaches - most of the time, sometimes migraines
Vertigo - comes and goes
Feeling of floating when laying down - comes and goes
Low body temp
Feeling like I'm dreaming and just can't focus on what's going on - comes and goes
Facial tingling - comes and goes
Feel like I'm not emptying my bladder all the way sometimes
Painful tailbone, can't sit and watch a whole move or drive very long
Burning pain in left hip since Dec. 27th 2007



Numbness started about 4 years ago, don't remember the details but had some numbness that lasted a week around my mid area (had a lot of slurred speech this time and "loss of word") and hands going numb a lot.


Dec. 28th 2007 when to the ER for left hand numbness, shortness of breath, major fatigue (I got winded and light headed just from talking.

Jan. 1st 2008 when to the ER for numbness from the lower ribs and down (both legs), still having the above going on. The leg numbness stayed for 2 1/2 days than I was numb just around my mid area and than the next day my left leg was numb for 2 days than just numb on left hip for a day.

Dec. 27th got a burning pain in left hip, hurts to even just touch the skin.
Jan. 9th pain area has gotten bigger.
Jan. 12th pain area is now most of the hip.
Jan. 24th pain area has gotten a little smaller but still hurts the same.
*

Here is where you ask to be referred to an MS specialist. A specialist will be able to tell you more about what's going on. Sorry! I know this is frustrating.

Mx7, are you going in with all of those symptoms listed? That is a huge list to give to a doc. My honest suggestion, is to list the top 3-5 that are bugging you the most. Document your history in as short of an explanation as possible, and let it roll from there. I imagine that would be a lot for a Doc to take in at once. I could be totally off, though.

I also agree that a MS specialist is in order. Have you called your local NMSS yet? That is how I found mine. He is great!

Thank you, No I didn't go in with all this. I didn't give this to him until after my last visit when he told me the LP was fine and he didn't see any thing neuralgic wrong with me.

Well, that was his code for "I don't know what is wrong with you, so lets call it nothing" Regular ol neurologists are trained in a little bit of everything. So he just may not recognize everything as a whole and connect the dots. MS specialist would be your best bet at this point.

Julie, Im so sorry you are going thru a tough time. As I looked thru
your list of symptoms, there are a few that are pretty normal in
the general population(like floaters, my eye doc says most have them
as you get a little older.)

Quite a few could fall under fibro(I have been diagnosed with fibro by my
neuro) And the others could be something else. I just wonder if
maybe more than one thing is going on.

I know this limbo thing is hard, sometimes I just needed to take a
step back for a moment. Its difficult when you have seen more than
one neuro, it is very frustrating.

Im here if you need me and I could be of any help.

Good luck,

Sox

OMG,they should do something before it causes serious problems. TO much can lead to dehydration.
Make sure what ever u do drink pleanty,and try to keep jellowater down. DONT drink red tho.

This is a huge laundry list, pointing very clearly to MS. However, the only people who would know that to be true are those that have MS, treat MS, or have researched MS very thoroughly.

I know people who've had those kind of symptoms for many years, some of whom are in wheelchairs now and still don't have an answer. The reason is that the doctors can find no objective evidence that something is amiss, like lesions (of the right shape/location/size), O'bands, and/or other clinical evidence. That is what they want to see, and that's it.

Some people are way more in-tune with their bodies then others, and possibly pick up on the signs quicker too. I was able to tune out much of what my body went through for the first 12+ yrs. And since I knew there was nothing out there to treat MS anyway at the time, I really didn't want to know. I even refused a MRI, which could have told the story.

I don't think you have any hope of getting a dx from anyone, until something shows in your MRI and/or a spinal tap, or if you are taken flat out by paralysis or something. Even then, they want to see those tell-tale lesions.

Unfortunately, pursuing this further (as neurological) is only likely to get you labeled by the doctors . . . which is really not a good thing.

Are you getting symptom mgmt medications in the meantime?

Cherie

OH dear Julie,

I rememnber you from MSW. From what I can read in the letter from this neuro is that he is stumped. Why? I do not know.

Do you pass the neuro evals?

How can he miss/dismiss all this?

OK I agree, its time to see an MS neuro.

Good luck and you know you have our support, love and understanding.
Your children look (tiny) in the avatar but oh so beautiful!!

Warmly Jan

Oh Julie,

I guess you didn't need to hear this sort of stuff from your neuro just now when you're feeling pretty bad anyway. I do hope your tummy settles down real quick, and please try not to get too upset about your neurologist's reply. It's probably better to make an appointment to go see him anyway, as I'm sure the two of you need to talk face to face.

Godd luck Julie, we'll be thinking of you