Are you officially Diagnosed????

[Erin0313]

Hey everyone :) We had a post from a new member about nice to know that you are not alone even though you have not been diagnosed.

I made a comment that we probably have ore members out there that are NOT dx than those that are and thus the poll. Let's find out. Of course the results will be only a sample; depends on how many people tune in and vote on the poll. Well let's give it a whirl for curiosity's sake

Thanks for taking the time to vote

Erin :)

[Erin0313]

  I was one of the Limbolanders for more than a decade. I told several doctors about symptoms and episodes but just like the car that behaves well when you take it to the mechanic I always looked good and wasn't "too bad" when I was at my appt.

More than one doctor thought that it was in my head or that I was making it sound much worse then it was. - 2 things

#1 Don't wear your nice clothes and get all pretty to see the doctor. Don't laugh, I know that I am not the only one who used to dress nice and put make-up on for an appt.

   We need to be seen at or lowest not at our worked very hard to look good best!

#2 If you are as of yet undx it is very important to be seen by a doctor when you are having a flair up or episode. It means 10x more for future doctors and the whole dx process if a doctor states that you were having certain problems and doing poorly than it does if you are looking good and reporting it yourself to a doctor down the road.

This wisdom(ha ha) comes from experience. I was finally dx after years because "they" did the right tests while I was having a MAJOR flair and I was so sick I couldn't have cared less if the President was coming to dinner, I was not putting on make-up or fancy clothes. My phone was ringing off the hook. Funny how all of the doctors wanted to be part of the dx when the MRI was lighting up like a Christmas Tree and the patient (me) looked like heck.

Take care
Erin :)

[PastorDan]

Yes, the neuros can obtain this info by listening to their patients.  That's precisely the problem: they don't listen to their patients.  They pick something to call it, prescribe some kind of treatment, and send the patient on their way until they complain again.  Next patient, please.

[Karen99]

Diagnosed RRMS 2001 with an MRI (few lesions) neurological exam and history.  An LP was not needed for diagnosis but got one anyway for my own purposes.  It was negative.  The dx stuck because my neuro isn't a wee nie.  Few new lesions since.  No new symptoms. No relapses since dx , maybe pseudo--relapses during stressful incidents.

Ongoing debilitating fatigue that comes and goes.  Any infection or flu makes it worse.  Also have pain.  Also dx with Fibromyalgia before the MS dx. I think it's all MS myself.  

Was on Copaxone for two years. Quit because no relapses and little change in MRI or symptoms.

Abnormal finding on neuro exam now is hyper reflexes.  More than one doc has almost lost his family jewels.  :-(

What I want everyone to know is that a neurologist does not have to personally witness every relapse you have before making a diagnosis IF you have a history of attacks on the central nervous system.  The neuros can obtain this info by listening to their patients.  

[Ufrustrated2]

not to hijack this thread but i indeed second PastorDan's suggestion. i honestly doubt we are the minority regarding what you brought up.

[supermum_ms]

Limboland here, just over a week before i see the neuro for my brain and spine MRI results, i'm expecting my brain to look like swiss cheese, and i'll be very surprised if they dont find lessions on my spine MRI too. The odds are against me to actually get a dx next week, from everyones stories it seems quite remote, i'm sure i'll have to wait for the next episode before dx.

That time-line part is going to cause the problem, with out at least 2 MRI's to prove the time bit, i wont be able to prove i've been dealing with this for around 20 years. I wonder if it counts as proof of time if you include the 'only' times i've ever been to the ER, which are all for 'as yet' unexplained events but make sense if your someone with MS, eg. last years ER visit for (you would know why i know if you've ever had one) the unmistakable MS Hug. Much to my families frustration, quite impatient which seems a lot more than mine, maybe just because they cant deal with watching me disintergrate before their eyes anymore, that feeling of being helpless, they are ready to beat a dx out of the dr's so i might have to go on my own just to keep the peace.

I dont think i'm overstating the urgency of my need for a speedy dx, who knows if my next episode is the one i cant recover from, for 6 years now they are getting more intense each time, obviously with the last being the most disabling and the longest fight of my life. A 7.5 disability status is no joke and time me thinks is running out, now or never sort of senario.

Cheers.......JJ

[PastorDan]

Completely forgot until now, but neuro #1 (some of you will recall me affectionately labeling him the neuromaniac) first proposed acoustic neuroma, before he read the radiologists' reports.  Migraine only came up when I had one, my first and only classic migraine since 1997.  Still wondering how it changed back so quickly to the same thing I've been having -- all day, every day, whatever it is -- since October.

[PastorDan]

Reading all of these experiences above, I can't help but marvel and wonder at what seems like willful blindness on the part of many members of the neurologic profession.  Do you think our experiences are representative, or are we just the hard cases?  Should we consider some kind of process to share our concerns and complaints with some specialty board somewhere?  With the numbers represented here, should we not be able to exert some kind of pressure that will result in improvement, if only for some future class of neuros or generation of patients?  Or should we recognize that we are a small percentage of the full number of patients seen by neurologists, and just forget it?

/rant

[cyndi25]

Limboland here!  Have app't w/ new dr. in Oct. hoping hes the one who can tell me
something,!!!! anything,!!!! besides the obvious.
Cyndi

[Sarahsmom46]

Diagnosed May 2009
RRMS
Copaxone
Took 1 year of intense testing and a clinical trial to final diagnosis.

[Louby70]

Still in Limboland.....

Had MRI with positive brain changes 9mths ago, seen a Neuro, failed on a couple of tests, but said, he does not think I have MS, even though I had no idea I was being tested for MS untill Janurary this year, the Balance Clinic were the ones who got him in, because of the results of my MRI.

His reason's were::::::
1) My brain change is because I smoke, (He told me this at the end of his testing.)
2) The reason I drop things out of my right hand, Yes I have lost feeling on parts of my fingers, he said you have slight Carpel Tunnel.
3) Yes I do have brisk reflexes, he said nothing to worry about, but 6mths prior to that I had normal reflexes.
4) Yes you have lost sensation in your right leg but said nothing more.

So I am really lost!!!!!!!!!! Maybe I will get my answers but am praying it will be sooner than later.

[borntolose102]

Diagnosed in 89. Been dealing with issues since I was 7. Have taken Avonex, Rebif, Copaxone, and currently back on Rebif...

[slightlybroken]

In Limbo, limbo, limbo.. :)

No official DX of any kind. GP, opthamologist, 1 internist, and several radiologist believe MS. My local neuro believes my symptoms and clinicial picture, fits MS. All mimics have been checked (and rechecked). My MS specialist believes something is wrong, but the problem is with the evidence. My lesions are considered nonspecific...no changes for 1 1/2.

[wadeheather]

In Limbo, probably forever....;(  Had a Neuro suspect MS, but MRI was clear two years ago. Have been dismissed as "headache" patient since. New Neuro on 9/23

[HVAC]

RRMS April 2009

Copaxone

Alex

[kmil1999]

I'm a limbolander.  Autoimmune vs MS

This go round: MRI 1.0 T small oval area of abnormal signal in posterior right parietal lobe and tiny nodule in posterior basal ganglia on right.  New from previous MRI's.  Neuro said "nonspecific, could be from bump on head" , physical he said I had parethesias but everyone has those and are normal.  Cranial nerve 5 - pin reduction over left forhead & cheek, cranial nerve 12 - pin ***** reduced over left dorsal median territory & bilateral sural territories, vibration reduced in toes, DTRs brisker in LEs the UES (especially let LE> right)

[Erin0313]

Well until I checked in to see if anyone had voted I forgot to "vote" myself, lol.

Thanks Lulu for asking everyone to share there scoop. We have done this before but it is always good to see and get in touch again with old friends and hear from new ones :)

OK I know that there are more limbo landers out there darn it!!!! I started this because I was convinced that the MSers would not be the largest piece of the pie. Boy was I wrong as of now. Check out the pie!

I am dx RRMS as of 05/07. Currently on Avonex have already tried Copaxone. My time in limbo land was at least 10 years like Zulma and lots of others.

Thanks everyone for sharing. Be well and keep in touch.

Hugs,
Erin :)

[poorkid]

Diagnosed now for a year and 1/2.  My, how time flies when you're having fun!  
If I had not gone to a MS specialist, I may still be undiagnosed.  However, I have progressed fairly rapidly, maybe due to my age (50).  
MRI's next week to see if I should stop the Betaseron.  I am having the same amount of attacks on it as I was before I started.  

I do not remember any symptoms prior to my diagnosis so I do believe MS started when I was about 48.  Approximately one year from onset of symptoms to a diagnosis.  I am finally starting to believe this is real.  

Still working lots of hours and it's taking its toll on me.  

To the undiagnosed: I know it's frustrating and a lot of work to Dr hop, but don't doubt what your body is telling you.  Find someone who will listen!  Also, I know this is minor, but I think you should schedule any appt with a new Dr. for the 1st appt in the morning!  
Catch them when they're fresh!  We wait and anticipate each appt when we are seeking answers.  It is so discouraging to be rushed through our face time with the Dr. because he/she is behind in their schedule.  I end up flustered and forget everything I was going to say!  

Prayers to all

[Mand125]

Yes dx 1994 so called "mild", I was dx after MRI and a few years of symptoms.

2-3 years ago this changed, RRMS, I sometimes wonder if it is SPMS.

Betaseron since August 2008 - had to have LP to "confirm diagnosis".

Mand

[gooddays]

dxd 03 rrms presently on avonex - looked for a dx since 1990.

Zulma (gooddays)

[LATW]

Presented with ON and it has been down hill since.  

Dx'd Feb 2008 started Avonex. continued progression

Started Betaseron July 2009

In the past 18 months I have had ON twice and have developed other symptoms such as Bilateral Babinski, damage to my optic nerve, bilateral foot drop, use AFO's and a walker.
I have slight Rhomberg with my eyes open and very pronounced Rhomberg with my eyes closed.
There are a few other things but I can not remember them.  Not that it matters.  I am dx'd with RRMS but wonder if it is RRMS since I have had progression over the 18 months with no clear let up.
In the past there had been clear R and R but not any more.

Lee Ann

[luverofrogs]

In limbo for 11 years with occasional dx of fibromyalgia that was later overturned since I have no tender or trigger points at all and do not fit the criteria in other ways as well. Testing so far has been oodles of blood tests, one open brain MRI and one 1.5T closed MRI with contrast that was looking for vasculitis, eye exam findings of double vision and an optic nerve issue along with some things I don't understand, neuropsych exam with various findings.  Going to an MS clinic for the first time next week and hope to find answers soon.  

[maggs970]

yes diagnosed 24th july 09 waiting to go on meds maybe september,had 2 mris 2 sets of steroids and lumbar puncture evp test done diagnosed with rr ms med called teriflunomide.

[PastorDan]

I might have suggested one more category: diagnosed, but not credibly.  I'm still a migraineur, according to the neuros, but this sure doesn't seem like migraine to me.  Of course, there are those who might be diagnosed with a host of things that are hard to believe in their case, including MS.

I am scheduled to see neuro #4 for the 2nd time on 9/21.  Until then, I count myself as a limbolander, and I likely will then, too.  That's how I voted in the poll, though I could be in the "Something Else" pie slice.  Only if this guy -- reportedly expert in MS -- has the good sense to order more tests, such as a spinal MRI and/or a 2nd brain MRI (hopefully on one of the stronger machines), maybe an LP, will I think that someone is actually listening and pursuing the facts.

I pray for accurate answers for all of you.

[hbananas]

Dx with transverse myelitis.  It's still possibly MS, just haven't proved dissemination in time yet.  Very mild.