Who is Diagnosed?

[Quixotic1]

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

[Quixotic1]

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

[Deb61]

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

[risnerrose]

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

[LATW]

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

[Lulu54]

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.

[JonM]

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

[young at heart]

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

[NZer1]

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

[Mand125]

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)

[sllowe]

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

[essdipity]

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

[cydney27]

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

[doni54]

Wow, Quix, this was a fantastic idea!!

[Heather3418]

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

[deborah0904]

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

[monotreme]

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

[treebranches]

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.

[cz1970]

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

[GrannyJo6]

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

[Rena705]

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

[shoshin]

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 symptoms to diagnosis: If you count from when I first knew I had a problem (4/01), then six and a half years. If you count from what I now think was the first noticeable thing in Jan. or Feb. of 1998, then close to ten years.

How many neuros before diagnosis: 3

[needanswers54]

Date of actual diagnosis:  Oct. 1, 2007
Type:  Not told.  Probably RRMS which is now possibly progressive ( think)
Meds:  No ABC's; lots of pther migraine, nausea, antiinflammatory, pain meds, etc.  Migraines so severe I must get IV dilaudid and odansetron.  Made MS diagnosis more difficult.  Small lesions in unusual areas in brain.  Multiple lesions detected in cervical cord since at least 2005.  Last neuro concerned that last lesion may be a tumor in the center of the cord; Radiologists say either MS with prior ADEM or TM possible and/or mets of CNS.  So much fun.  Referred to MS Clinic but unable to get in as of yet.  Diagnosing neuro recently put it in writing to the clinic as recent MRIs showed last lesion/tumor enlarging to posterior of spinal cord and enhanced.  Visually mild atrophy of cerebral and cortical areas of brain on regular MRI.  Hoping to get on research trial at MS clinic so I can get some ABC drugs.  Also being tested for Devic's.  Prior test negative.  But, they have more false negatives than positives.  So, I guess it is wait and see.

First MRI which was done for a back injury showed a cervical lesion in 1998.  Missed by radiologist, then.  Then, 2001 was listed as an artifact or small gliosis.  2005 MRIs neuros kept saying (and my regular John Hopkins trained neuro) keeps saying that it is artifacts. even after another spinal lesion showed.  Everyone kept insisting lupus due to my severe migraines and other immuno/rheum symptoms.  The JH trained neuro sees the lesion at C5 and C2, but not C7.  Others see C2 and C7 (and possibly others?).  Diagnosing Neuro said I probably had it for years before then the MRIs showed it.

Have had severe unrelenting daily migraines for almost twenty years.  Have been on all daily preventives without success.  Also been in migraine research.  The migraines have literally ruined my life.  Noone understands the enormity of them other than the doctors.  That is why the neuros and rheumies and immunologists kept checking for lupus, sarcardoises, MCTD, dermatomycetes/polymyositis, etc. for last fiften-plus years.  They say that MS does not cause migraines.  But, I have read some writings that say differently.  Does anyone have an answer to that question?

Given possible lupus or MCTD and definite fibromyalgia before diagnosis.  ANA had repeatedly been elevated since early 1990s up to 1:320 with homogeneous or speckled pattern.  Slight malar rash on face and other weird rashes or skin changing color like to bright fuschia or black or blue at times without any explanation or diagnosis.  Recent research has shown that lupus will typically go above 1:320 and that 1:320 or below is associated with MS.

Now have definite daily tremors, visual problems, weakness, and other problems.  Funny thing is that now my ANA is normal for the very first time since 1992.  All blood and spinal cord tests for MS negative.

Exposed to meningitis and hepatitis-B and other infections (via needlesticks) repeatedly during hospital work.  Received the first hepativax which France and others took off the market and compensated their employees for because it caused a weird pattern similar to what I am experiencing.  The US is the only country which I have been told has not found any problems related to that vaccine.  But, I was also read that they tested the vaccine after it was changed.  Later exposed to a faulty biohazard incinerator for over two years in my personal work area.  Later exposed to toxic chemicals in the air (radioactive and caustic, and possibly carcinogens) at the workplace.  My OSHA rights have been denied as to my occupational exposures at the hospitals and the nuclear and a production facility.  So, I am diagnosed with MS.  Perhaps the clinic can do more tests and shed more light.  I am going with the MS diagnosis for now as at least it validates that something is actually wrong and this is not all simply made-up by me.

Five-ten or more specialists had proprosed lupus/MCTD and fibromyalgia as probable diagnosis.  Four neuros basically let me think I had nothing wrong other than anxiety/depression/migraines.  Later that year diagnosed with MS after at least three other doctors proposed that they thought it was MS.  Even the hospital radiologist in 2005 had propsed demylinating disease.  Yet, could not get another MRI ordered until last year.  Even tried going to a shrink to get an MRI and cognitive testing done.  He would not do it even with the radiologists proposing demylination and three doctors suggesting MS.  Listed it as depression.  Pretty pathetic, huh?

Now have practically all my discs bulging.  Have taken some bad falls.  Have anterolithesis now, also.  Combined with my spasms it makes it appears that I am convulsing or seizuring.  Oh, well.  At least people now believe me that I am sick.  My mother told me that if I had MS that all my hard work and education was wasted.  On diability now.  Family in total denial about my disease.  So glad that I have all of you for support.

Take care and God bless.

Torey

(Sorry I prattled so long.  Just do not get to get on here very often.  I have to use the library computer.)  

Any and all input of insight appreciated.  Thank you!!!

[Erin0313]

To Quix:

Date of Diagnosis: May 2007
Type Of MS : RRMS ( but I think it's switched to progressive)
Med: Rituxan
Time from 1st symptom to diagnosis : almost 9 years
Number of Neuro's: 6 - The 2nd one diagnosed MS with MRI but not enough other supporting tests so left in limbo land for 6 more years

[patientx]

Your date of diagnosis:   Aug. 2008
Type of MS:   Probably RRMS (not entirely sure)
The med, if any you are on: CombiRX trial (combine Copaxone and Avonex)
Time for first symptoms to diagnosis: 4 months
How many neuros before diagnosis: 1

I'd also be interested in seeing how soon after diagnosis people started a DMD.