My Neuro Apointment

[RAY911]

Hey,

Oh HELL Quix,, I"m sooooooooooo sick of this ****!!!

Ok well I went to the doc and she went from "propable MS" to not to sure HOWEVER she wants me to go to Vanderbuilt in Nashville TN,,, yea,,,,,,,,,,,

She said she is sending all my MRI's etc and would like a team of docs there to look at them......

I WAS IN TOTAL SHOCK!!!!!!!!!!!!!!!!!

What the hell?????????

So long story short... she did not say if it WAS or WAS NOT MS,,,,instead she wants me to go 4 hours to Vanderbuilt and she advised me to get a hotel room because it would be an all day thing... uggggggg

Sorry for the Rant and thank you for listening to me  

let me know what you think ok?



I had a spasm in my leg 3 nights ago and it still hurts,, it feels like it is still spasming... off and on, but it tighten's up so it hurts to walk,,,  what do ya think???  low potassium???  ms????  or did my head make it happen?????????  LOLOL

Love ya  
Ray

[aiMelissa]

From a completely not related to MS point of view.  Go to Vanderbuilt.  It will be the best for you.  I went through about 4 years of frustration, appointments, medicines, surgeries, etc to find out what was wrong with my liver.  I finally got my answers two weeks after my first visit to a big teaching hosptial 2 1/2 hours from here.

And some big hospitals have hotels on site or hotels that offer discounts for patients.  So make sure you ask about that.  Good luck toyou.  Sorry you didn't get an dx that day.  That is kind of what I am expecting at my next appointmet, lol, maybe I better think otherwise.  

[Quixotic1]

I am finally here.  You kept sliding down the page and then I was sick.

I understand that your current neuro is just not confidant enough to make the diagnosis.  that's okay.  Really it is.  She is ethical enough to want to do right by you and isn't just dismissing you like we see so many docs doing.

I heartily recommend also that you go to the Vanderbilt MS Clinic.  See what they say.  If they confirm the diagnosis, then generally they will  see you once or twice a year and help direct your care with your local neurologist.  It will all be okay.

What you went through is the reaction of disappointment.  I totally understand it.  You thought you were going to be released from Limbo and she prolonged your sentence.  It doesn't seem fair, but she is helping you toward a firm diagnosis and not letting her ego get in the way.  

Cramps "may" be due to low potassium.  The way to deal with this is to get the OTC potassium gluconate supplements.  I get mine at Safeway, my grocery store.  Each tablet (they are all the same) has only 3% of the RDA so they aren't dangerous if you aren't in kidney failure or have bad heart problems.  When I am having more cramps I take 2 or 3 tablets - three times a day.  Within a day my cramps are better.  If a few days of this don't help, then your cramps are most likely neurological spasms.  The quinine water also works for a lot of people.

Another thing you can try is a tablet daily of a high grad magnesium.  This is harder to find.  99% of the magnesium supplements have magnesium oxide which doesn't work worth beans!  I recommend getting and using one of the following"

magnesium orotate
mag aspartate
mag gluconate
mag taurate
mag arginate.

I use magnesium orotate, one capsule at night.  It keeps my blood pressure normal.  But, it also can have a muscle relaxant property.

Quix

[brandisnif4]

Ok this gabapentin/neurontin is starting to help some.  My dose just got increased, and I am not laying in bed at night with as bad pain and having spasm.  Apparently I am sleeping pretty sound to.  My hubby says I am snoring like a freight train.  :)  I can also tell you I forgot my afternoon dose sunday, and boy was that a mistake.  So that tells me it's helping.

I know you don't want more meds, but you may want to consider it.  I feel like my cabinet is starting to look like my mothers. :(    GoodlUck

[RAY911]

BUMP one last time.

:)

[RAY911]

Thankyou Brandi and Maggi,

I'm on 3 different meds right now,, and the thoughts of taking another,,,, well lets just say I REALLY dont want to have to take anymore,,, UNLESS its a DMD!!!!!!!!!!!!!!!

well then i'm all for it!!!

Thank you everyone for all your kind posts its so nice to know people care and that i'm not alone in all this,, it has been a roller coaster... and i'm sure you can all relate,

BUMP for Quix ok?

Love you all
Ray

[LLWB]

I get spasms in my legs and back, either from my fibro, degenerative disk disease, diabetes, or whatever. I have started drinking diet club soda with Quinine. The quinine helps with muscle spasms, and it's cheap. I usually drink at least a quart a day. While I was on vacation, I didn't drink it for several days, and my spasms got worse. I hope this suggestion helps you, but it won't hurt you, and I think it's better than adding another perscrip medication to the stew.

Hugs & Prayers

Maggie

[brandisnif4]

Ray,
I finally got in with an MS specialist & head of the clinic.  Boy what a difference that makes.  Thay have even called me at home to see how I was doing with some meds they started me on.  I think that being in the care of a dr,. that specializes in this crazy disease helps.

Now on the leg issue, I have had the tingling for about a year.  Then about a month ago I started to have spasm, pain etc... It felt like I had worked out all day with no rest.I tried bengay, heating pads, bananas, extra water, stretching etc...  My new neuro prescribed gabapentin (neurotron??? generic). Can't say it's working yet, but I think they are going to up my dosage.

For fatigue they prescribed provigil, again I don't know how it will work for me as I just finally got it approved thru my insuranceso I just started taking it today.

Just thought I'd throw that out for you since we have similar symptoms.   good luck!

[RAY911]

Thank's Jen,,

I HEAR YA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! LOL:):)

I did what you said last night.. with the heating bad,, it did help some.. I am currently taking vitamin D and also super vit B complex for the fatigue,, it seems to help.. well it really helped the first week,, now i'm not feeling it as much:(
How long does this usually last?  last night it went into the other leg,, and i've also ate bannanas like crazy.. but yea last night it started in the other leg,, ugggggggg,,

not fun

Thanks again
Ray

[jensequitur]

I would say that your spasms are definitely an MS symptom - I haven't had them as bad as you, but I take some self-prescribed anti-spasticity medicine which really helps.  (Let's just say I wish I lived in California, so I could have a prescription!)

As to what you can do about it...  You may not be able to stop the spasms, but you can treat the symptoms.  Make sure you get lots of water to flush out the sore muscle toxins.  Take potassium supplements and Vitamin D.  Try a hot pad wrapped around your leg to warm the muscles up - not too hot!

[RAY911]

Thank you all for all your comments.

Your right,,, and yes i'll go,, I was just sooooooo hoping that she would tell me what it is THAT DAY,,,, then start me on the necessary meds.  So I went to the doc just (knowing) that I'd get answers....

(I don't recommend that) lol= "laugh outloud" :)

anyway as far as if she is stuck,,,, yea I feel she is stuck and i'm thinking it is because of the VEP AND SSEP testing.. I mean that's all it could be.... I don't know and she didn't want to speculate what ELSE it could be......
I just don't understand.... I went from a couple of lesions to "several" seen on my 3t MRI.. and i'm telling you I've had spasm's in my left leg for over a week now..
anyone else have this?  It all started with a horrible spasm waking me up at night... then the next day it was so sore i could barely walk,, but I could feel the muscle moving and still spasming .   this is new for me.. and even now its still spasming from time to time.

anyway my neuro did not say it was or it wasn't.. only she did not want to start me on any DMD'S until we know for sure.. she said that they can have serious side effects... and so on....


I just cant imagine what else it could be???

well I'm just going to try and relax and put it in the Lords hands.. time will tell wont it???

Oh Santana she did tell me that it would be a team of Neurologists looking at all my tests results then would call me for an appointment and go from there.

So I'm sitting back here in Limboland... (AGAIN)
So glad I have friends like you.

Ray

[santana8]

Hi, Welcome to the MS forum!  I am afraid that you have posted at the end of another post and your story may not get read by all here!  If you go to the main page and all the way to the bottom you can submit a new post on the main page!  This way everyone will be able to see you there!!!

There are a lot of caring people here that would be more than glad to help lead you in the right direction to get the answers that you need about a diagnosis.  You will also learn a wealth of information about MS and the MS mimics here on this forum!

I am still in between two dx right now so I will leave your medical questions to someone who has more knowledge of those conditions.  Just wanted to welcome you!!   And also to let you know that you are not crazy!  Sometimes dismissive doctors can leave us feeling this way, and I know  from experience exactly how you feel!!!



~Santana

[dancefanatic]

I am new to the forum (about a week now) and more and more I am finding myself relieved.  I AM NOT CRAZY!!! I was diagnosed last May with gastroparesis (paralyzed stomach) and since then things have progressively gotten worse.  Numbness, tingling, shock sensations (or lightning bolts) and major muscle spasms (my most recent started yesterday and is still going) as well as stiffness in my left calf for the past ten days or so.  My  MRI showed one lesion, but my VEP was normal as well as the nerve study.  My neuro and gastroenterologist want me to go to the mayo clinic in MN (I am in FL).  They refuse to do a lumbar puncture here before I go to rule out MS.  Although, I have had 4 doctors tell me they think next year more lesions might show up and THEN they can diagnose me with MS.  it's already been a year and 3months (8 months since I worked due to disability from pain and nausea) - what's one more year, right??? I am so frustrated!!!! The Mayo clinic trip will be on my dime plus the hotel stay for TEN days! Then I have to pay 30% of the medical bills once I get home.  Why not rule out MS now with one more test?? I just dont get it. Thank you all for your postings.  Just knowing that Im not crazy and other people are experiencing the same symptoms makes me feel so much better even if I dont have a diagnosis yet.

Hugs to all,
Christy

[AMO]

hi ray,

oh dear, ii can read in you post how  very upsept you are, rightful so.
I know the rollercoaster emotions is so taxing, b ut hang in there.

Sound like for some reason your doctor wants new eyes on your case, that isn't always a bad thing, you want and deserve the correct dx'. If it means go ing on this jont thennn you will.
I lilke zilla's take to get all comfy and spa it up! But don';t rest 'tttoo' much...want to make suure     all symptoms are a go! ha!

keep us posted yake care, amo

[sllowe]

Hey Ray,

This sounds like wonderful news to me!

Do it, get that room, go onward! This is a good thing!

-Shelly

[LLWB]

Oh Sweetie, don't give up! At least they are still pursuing things to get you the best care they can. I know how hard it is to keep going. But you can't give up now. This might be the answer you need. Just take care of yourself, have a nice bubble bath, cool of course, cuddle with your wonderful family and re-charge your batteries, and then gear up for another round. My prayers and thoughts are with you.

All the best. Hugs & prayers, Maggie

[santana8]

My neuro sent me to Vanderbilt to see a neuro- optho.  This is the only doctor that I was seeing there.  I made the four hour drive to Vanderbilt Hospital in Nashville and after all of that distance I was very disappointed with the results.

This Neuro- optho spent maybe 15 min in the exam room with me and did nothing more than my regular optho and regular Neuro had done back in Knoxville.  He didn't explain anything to me about how the vision loss was in my brain and not my eyes, this is suposed to be his field of expertiese!!!!!!!!!!

I am not saying that the team of doctors there wouldn't do a better job for you, but this was just my own personal experience with this one doctor there!  Do you know what kind of doctors are suposed to be checking you?    Is this suposed to all be done in one day and is it in patient or out patient?  I would be interested to know since if there is some kind of facility there to get to the bottom of problems like these( neurological) then I would like to know how to be refered there!!!

Vanderbilt Hospital has a good reputation here in Tennessee, but I was not impressed with the neuro- optho they sent me to there, and felt the trip to see him was a complete waste of time and expense!

I am familar with your neuro here in Knoxville, and they are suposed to be  one of the best in this area at  MS diagnosis!   Is there something in your case that has her stuck??

I am getting ready to go to my new neuro here in Knoxville on July 29th. He is heading up the new MS clinic at the Brain and Spine Institute at UT hospital and is suposed to be an MS specialist.  I will let you know if he is good after I see him.  If this trip to Vanderbilt doesn't go well you might want to check out this new MS clinic in Knoxville!!!!!

~Santana~

[Momzilla]

Hi, Ray~

It looks like you've addressed this to Quix, but I'll jump in here, too.  

I think having a TEAM of doctors to look at your reports and you is going to be a good thing!  If only gas prices were not so high!  Oy.  Try to make the best of it.  Get a nice hotel room, take a sauna before you go, so you're good and symptomatic!  This is what your doc wants, so I would comply.

Hang tough and remember all the good things you've learned here!

Feel well,

Zilla*

[Heather3418]

I totally agree with Ada.  I would go to this appointment, even if it is 4 hours away.  It sounds like you would get a thorough work up for sure.  I don't know much about Vanderbilt.  Maybe another one of our Forum members will be able to tell you how good they are, so it will rest your mind a little.

I know that you are at the stage where you want to pull your hair out with disgust.  Many of us have been in your shoes.  It's such a shame that MS continues to be such an elusive diagnosis for so many.

Many Blessings and Big Hugs,
Heather

[spastic]

Hey Sweetie, I'm sorry the Dr wasn't clear on what this is.  But if she thinks that you can get an answer from Vanderbuilt, definately go.  To me, it seems when they tell you to go to these huge facilities is that they aren't quite sure what to dx you with.  My Dr's are still saying I should go to Mayo in Rochester for other opinions.  But I'm not going.

As for the spasms in your leg, I can sympathize with that.  How is your vitamin D level?  I know if your vitamin d or potassium is low you can get really bad leg spasms and pain.  I would suggest taking at least 1000 iu's of vitamin D a day.  I am not sure what the recommended amount for potassium is.  I hope some others can give an idea on that.

Well Sweetie, drop me a note, if you get a chance.

Love Ya,

Ada