scared with symptoms undiagnosed

[flowerfloosey]

I am still undiagnosed. My orthopediac surgeon has suggested that I go to the Mayo Clinic for diagnoses.
Today, I went shopping for a few things. Lately I can't stand very long at all. I am loosing my legs. I was carrying a few clothing items over my arm and it became so weak my hand and arm were shaking. The weird thing is..that rest makes it almost immediately better. Lately my head feels heavy when I am tired like my neck can't hold up my head.
Does anyone else ever feel like this? I wish I had a diagnoses so I could go on meds to help this not get too much worse. I was thinking about what I was able to do even a year ago and I am really becomming disabled. Any thoughts would be appreciated.
Cynde
ps...I have not had another lumbar puncture or brain scan cause I really dislike this doctor and can't decide what to do

[flowerfloosey]

Thanks so much for all your encouragement and ideas. I am just waiting for Christmas to be over before I start the weary task of going after this again. I am soooo tired of feeling out here by myself trying to find answers. My life has really changed in the last 6 months. When I had hip surgery in Aug, I had a really good anesthesiologist in a hospital out of town. When I told him that I was "Lab supported probable ms" and that I had oligoclonal bands, he then referred to me as having ms. He did general anesthesia because of it. He told me that there was evidence that doing a spinal could make ms worse. I have thought about that a lot and all of my symptoms started after my first hip surgery 5 years ago. Interesting. I am just afraid that it is PP ms.
I would love to know of a good doc at Stanford! My friend just went to Mayo after going to Stanford and told me their testing was much much better there.
Thank you all and hugs to you,Cynde

[Eyesnlegs]

I just got THE news and now feel better as I am not going mad. My second MRI in 5 years showed fuether demylineation (just 2 more spots) and the visual evoked potentials were borderline - I was expecting the neuro to leave me in limbo but he admitted that it had to be MS causing my symptoms as there was no other explaination. I first had ON when I was 34 (now 53) - yes it took that long - but it is very slow developing and could be classified as Benign MS - it feels good to know that I am not 'neurotic' or 'suffering stress' and that all the sensory symptoms have a cause - so keep pushing all of you - you will get there in the end.

[Fluffysmom]

Hi, I totally relate to your frustration.  My LP was clear, but i have a brain full of small lesions.  I'm on my third neuro, who's a MS specialist, who thinks I have small vessel ischemic disease.  She notes my many neurological symptoms, and keeps MS as a differential diagnosis, but only by my persistance and insistance have I gotten anything done.

I saw her during a flare of my symptoms, and things were very different; she SAW me as a neurological patient.  Then I got  a copy of her chart notes, and they were generic, like the last visit's; she apparently forgot the visit before she did her notes.

I won't even mention my first two neuros, except they taught me a lot.  I learned that they can have huge egos, and must be handled with care.

I did get a referral from #3 to an excellent neuro-ophthalmologist that might actually help me get the ball rolling towards some sort of diagnosis  He really listened and understood, and did very thorough testing (4 hrs!).  I only got that referral by asking questions, leading her towards that referral.  Then she referred me to general ophthalmology.  I had the staff directory (from a friend), called neuro-ophthalmology, and got an appt. in a very short time.

I'm interested in seeing what the chart notes from the neuro-ophthamologist are like!

I've heard good things about Stanford, but only in general, not neurology or MS clinic info.  Does anyone know anything about a good doc at Stanford or UCLA for Cynde to see?

Limboland can be so trying; you need a diagnosis, but don't have the energy to fight for one, and why the heck should you have to?  I just know that having these people here to share the trials and tribulations with makes it a lot easier to bear.

Wishing you the best of luck,

Kathy

[flowerfloosey]

Thank you for your support and caring thoughts. YOU guys are great!

I have been to UCSF. I got the complete run around there. The first neuro I went to told me he didn't believe the results from the lumbar puncture(8 oligoclonal bands) so ordered another which I complied with. It was even more positive with 12 bands. He was wishy washy..giving me a rx for methotrexate. Before I got home, he called me and told me not to take it. The next visit cemented it for me. He ordered another LP and told me that their lab there was better than any other and wanted me to have the LP and send the fluid to THEIR lab. So, I complied again and when my friend that works at the local hospital lab called them to find out where to send it, they gave her the info for the same lab that had done the previous tests. I was furious.  The doctor there had given me his email and when I confronted him on this..he got mad and told me he wouldn't see me again. So..I called to get another doctor and they gave me an appt three months out.
They called to confirm that appt and I was not home. When I called the very next morning, the receptionist named maria (she is a doosy) had given my appt away! So'
when I finally got another appt with a different doc, they had given me a doc who specialized in optic probls with ms..which I have none of. That appt was a total waste of time for both of us. He looked in my eyes and told me he didn't see anything there that would show a dx of ms. I could have told him that cause I had already been down that road.

Mind you..this is a three and a half hour drive to the City and I have to stay there overnight cause I am too tired to make the drive home after being there. I am not the only one who has had similar experiences there. I hope there is someone out there that can dispel my experince there.

The doctor that sent me there is my favorite neuro. She told me she would send me to UCLA or Stanford  if I wanted.

I am soooo tired of chasing doctors and just want someone to figure this out. I thought maybe if I went to Mayo, they would do tests until they came to some conclusion.


I am interested to hear from people that have gone to Mayo Clinic because I am about to
go down that road.

Thanks for reading this long post.
Cynde

[meg321]

I have good Dr. but lost my primary and have not met the new one.  But I am going to UCSF and I have not heard anythingbut good a bout them, my husband was there for a stroke and his cancer and she swears by them.  I know the ms clinic is busy but they my results on my last spinal mri since last Friday and I had one call from the nurse and she said the Dr would call this last Monday and I am still waiting.  I wouldnt know where else to go and i dont think any of us have the money to go chasing Drs around.

That may not be very by others standards, i am not sure but I do know how frustrating this can be and depressing.  Doni, i dont know how you wait for years. actually i might not have years left.

Take care, hang in there...hugs, meg.  

[doni54]

Hi Cynde,

I've been in limboland for years and it gets to be a really scary place sometimes.  It really stinks to feel your symptoms worsening and not have that dx.  Knowing there are meds out here that could slow down the progress if we only had a dx, is also quite frustrating.

Hang in there, you are not alone, there's lots of us here going through the same thing.  If you aren't happy with your dr maybe it's time to find one that will work harder to get you a dx.

I wish I had worked harder years ago to find a good dr who would listen to me and not give up until a dx was found.  I'm not gonna give up this time, though.  There is a dr out there who will listen to you and help you.

Good luck and keep us posted on how things are going. Hope you have a Merry Christmas!!

doni

[buriedinfur]

I think that anyone that is in limbo or has been in limbo can understand the desire for answers. Others may not get it - I mean why would you 'want to hear something bad'. But the point is we already know something's up...we just wanna know what it is.

Hang in there. I'm in a very similar boat, but I'm switching neuros. Though lately the old (current) neruo is taking me much more seriously which is validating in ways. Just had the spinal tap today.

Anyways, people here are really good. If you don't trust a doctor, find a new one. I spent way too long getting beat down and ignored by doctors. Since I've switched GP's I've gotten so much more help for my stuff it's not funny, which is good cause it's also gotten a lot worse. LOL

But yeah, I don't have time to waste on people who can't get over themselves. Neither should anyone else.

[Lulu54]

Cynde,
Do you have an MS Clinic in your area?  I'm thinking you don't necessarily have to come to Mayo to find a good doctor and we hear mixed results there.  Perhaps our members would have a suggestion for you if you tell them your home town area.

Its good to see  you posting again even though your news isn't so good.

My best, Lulu