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MedHelp Member's Question

Who is Diagnosed?

by Quixotic1, Nov 27, 2008 02:17PM
Last winter our wonderful Heather asked this same question and we had a fabulous response.  But, that post got very long and difficult to run through.  We have over a hundred very active members now and I would like to see the results again.  I should have all of this neatly in a notebook or a database somewhere, but, ya know, somehow my organizational skills have gone the way of the dodo bird.

Please, all of you who read this who have ever posted or might someday post:

Please give us

Your date of diagnosis:
Type of MS:
The med, if any you are on:
Time for first symptoms to diagnosis:
How many neuros before diagnosis:

We will all appreciate having the info so we don't have to constantly ask and feel like dufusses.

Thanks, and lets try to keep it bumped up.

Den Mother
Member Comments (46)

by Quixotic1, Nov 27, 2008 02:19PM
Your date of diagnosis:  March, 2007
Type of MS: RRMS
The med, if any you are on: Avonex
Time for first symptoms to diagnosis: 2 1/2 years
How many neuros before diagnosis: 2

Quix

by Deb61, Nov 27, 2008 02:48PM
Your date of diagnosis:  February, 2008
Type of MS: RRMS
The med, if any you are on: Copaxone
Time for first symptoms to diagnosis: 10 years, at least
How many neuros before diagnosis: 1

by risnerrose, Nov 27, 2008 03:19PM
Your date of diagnosis: Aug 2007 / Undiagnosed:  Nov 2007 / Rediagnosed:  Nov 2008
Type of MS: RRMS
The med, if any you are on:  Yet to be determined
Time for first symptoms to diagnosis: 3 years (I may have had symptoms 18 years ago)
How many neuros before diagnosis:  1st and 3rd

by LATW, Nov 27, 2008 07:39PM
Your date of diagnosis: Feb 2008
Type of MS: RRMS
The med, if any you are on:   Avonex
Time for first symptoms to diagnosis: hard to say but first bout of Optic Neuritis really got my doctors attention. Second bout got me a dx.
How many neuros before diagnosis:  2

LA

by LGK54, Nov 27, 2008 07:53PM
Your date of diagnosis: Sept. 26, 2008
Type of MS: RRMS by the neuro for insurance but probably SPMS
The med, if any you are on: Copaxone
Time for first symptoms to diagnosis: over 20 years but I didn't realize it at the time . First time talking to doctor about symptoms until dx was 2 months
How many neuros before diagnosis: 1 - and I might add one of the best from what I can tell from reading about others experiences here.

by JonM, Nov 27, 2008 08:50PM
To: quix
Your date of diagnosis: 12/29/06
Type of MS: RRMS. although transitioning I think to SPMS now
The med, if any you are on: Avonex
Time for first symptoms to diagnosis: 2 months
How many neuros before diagnosis: 1, went to a 2nd one for 2nd opinion.  They agreed

JonM

by young at heart, Nov 27, 2008 10:59PM
YOUR DATE OF DIAGNOSED:1998
TYPE OF MS:RRMS NOW SPMS WITH PROGRESSION
THE MED IF ANY: REBIF
TIME FROM FIRST SYMPTOMS TO DIAGNOSIS:3 WEEKS
HOW MANY NEURO'S BEFORE DIAGNOSIS:1 WHEN ORIGINAL DIAGNOSED,DISREGARDED DIAGNOSIS AFTER TRAMATIC BACK SURGERY.
NO SYMPTOMS,OR THEY WERE THERE,BUT IGNORED,BUSY MOTHER OF 4.
SYMPTOMS REAPPEARED LATE 2004,DIAGNOSED AGAIN DEC.2006 AFTER 4 NEURO'S

T-LYNN

by NZer1, Nov 27, 2008 11:42PM
To: Quix
Your date of diagnosis; 2008
Type of MS; Neuros words "Mild". MS Nurse, GP and I beleive PPMS
The med, if any you are on: (Do not qualify under health system) None
Time for first symptoms to diagnosis: 2 years
How many neuros before diagnosis: 4

by Mand125, Nov 28, 2008 03:50AM
To: Quix
Your date of diagnosis: 1994
Type of MS: Mild originally, now RRMS (I sometimes wonder if it is SPMS)
The med, if any you are on: Betaferon
Time for first symptoms to diagnosis: 5 years - time from seeing first neuro to diagnosis, couple of weeks
How many neuros before diagnosis: One

The neuro I saw earlier this year wanted to do a LP to confirm the diagnosis before prescribing DMDs (In the UK a LP isn't necessary for a dx so my original diagnosis was based on years of symptoms and an MRI)

by sllowe, Nov 28, 2008 06:45AM
To: Quix
Your date of diagnosis:  Julyish, 2007
Type of MS: RRMS
The med, if any you are on: Rebif
Time for first symptoms to diagnosis: 4 months
How many neuros before diagnosis: 1

-Shell

by essdipity, Nov 28, 2008 08:22AM
To: Quix
Your date of (wimpy) diagnosis: Jan. '08
Type of MS: RRMS
Med: Avonex
Time from first symptoms to diagnosis: 8 years
# neuros to diagnosis: 6

ess

by cydney27, Nov 28, 2008 09:06AM
To: Quix
Date of Diagnosis: Oct 2008
Type of MS: Dr won't say, thinks it's to early to tell
Medication: Neurontin, Baclofen and soon, Rebif ( he says he puts everyone on something, no matter what type of MS it is)
Time from first symptom to diagnosis: 11/2 yrs.
Nuber of Neuros to diagnosis: 2

by doni54, Nov 28, 2008 10:26AM
Wow, Quix, this was a fantastic idea!!

by Heather3418, Nov 28, 2008 10:49AM
Your date of diagnosis:  1994
Type of MS: RRMS
The med, if any you are on: Avonex, then years later, Copaxone - presently on
Time for first symptoms to diagnosis: 1st Neuro-4 weeks
How many neuros before diagnosis: 3 - to give definitive diagnosis of MS

by deborah0904, Nov 28, 2008 01:03PM
Your date of diagnosis:  November 10, 2008 I was given partial dx
Type of MS: something to do with adrenal system, still waiting for exact name
The med, if any you are on: Nothing just yet
Time for first symptoms to diagnosis: 20 plus years
How many neuros before diagnosis: 4

by monotreme, Nov 28, 2008 02:23PM
To: Quixotic
Date of diagnosis for Craig: August 7,2008
Type of MS: PPMS
DMD:  Copaxone
Time from first symptoms to diagnosis: 4yrs since that is what NYU said
Number of neuros before diagnosis: 8

by treebranches, Nov 28, 2008 04:16PM
To: Quix
Date of diagnosis:  January 2007
Type of MS:  None; Peripheral Neuropathy of Unknown Origin
Med: Gabapentin, 900mg/day
Time from first symptom to diagnosis: 6 years!
Number of neuros:  1, but 8 other general doctors

I'm an in-and-out poster.

by cz1970, Nov 28, 2008 05:10PM
To: To Quix
Date of Dx: 7/08
Type of MS: RRMS
Med: Copaxone
Time from first sx to dx: 4 yrs w/ Llermettes then 1 yr w/ O.N.
Number of neuros: 1 neuro and 4 MD's

by GrannyJo6, Nov 29, 2008 11:14AM
Date of Dx: 1979 & 2002 (can you say denial?!)
Type: RRMS
Med: Avonex
Time from first symptom to dx: suggested immediately, then 4 yrs til next symptom and then almost 20 yrs until something caught the opthamologist's attention
Number of neuros: 1 in 1979, 1 now

by Rena705, Nov 29, 2008 11:34AM
Date of Dx:  May 1993
Type:  RRMS in remission until July 2007
Meds:  Denied DMD's by Neuro who has stated my disease is "in-active".
Time from first Symptoms to Diagnosis:  Approximately one year
Number of Neuro's before Diagnosis:  2

by shoshin, Nov 29, 2008 01:42PM
Date of diagnosis: November 2007; previously dx'd with idiopathic (cause unknown) peripheral neuropathy for six years

Type of MS: I gave up on this question. It makes my head hurt.

The med, if any: In clinical trial for FTY720/fingolimod, an oral immunosuppressant (1/3 chance placebo, 1/3 0.5 mg dose, 1/3 1.25 mg dose)

Time for first