Who is Diagnosed? - Multiple Sclerosis

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Who is Diagnosed?

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maestro1959

Jul 27, 2011

Your date of diagnosis: Initial July 2010, Final February 2011
Type of MS: PPMS
The med, if any you are on: Neurontin, Zanaflex, Duragesic Patch
Time for first symptoms to diagnosis: December 2009
How many neuros before diagnosis: 1

vidalouise

Jul 27, 2011

Your date of diagnosis: 2001 Type of MS: RRMS
The med, if any you are on: Copaxone
Time for first symptoms to diagnosis: 12 years
How many neuros before diagnosis: 1

fortywhat2

Jul 28, 2011

This has been bumped so I think we are doing it again???

Your date of diagnosis: 8/2008
Type of MS: PPMS
The med, if any you are on: none avaliable for PPMS
Time for first symptoms to diagnosis: not sure...
How many neuros before diagnosis: I have seen 4 over the years for a variety of things but never imagined MS the first one I went to after MS was questioned diagnosed me... I now go to a different one because I was referred to her for a lumbar puncture and we clicked :) so I changed... now the original one works at the same clinic UGH!!!

kel1lost

Jul 28, 2011

I was Dx in May 2011. RRMS. It's still hard for me to accept this. Some days are great and some days are not. I will overcome this, I have faith and I know that everything happens for a reason. I take Rebif so I'm in good spirits about that.

Kelli

sllowe

Jul 28, 2011

Kel1lost - can I be a pain, and ask you add the rest:

The med, if any you are on:
Time for first symptoms to diagnosis:
How many neuros before diagnosis:

gwen306

Jul 28, 2011

To: Cherie

I came across this tool on Healthline.com. It helps people assess their MS symptoms and helps gauge whether or not to seek out consultation. Could be of some use.

http://www.healthline.com/corporate/microsites/tysabri/ms-assessment-tool.html

kel1lost

Jul 28, 2011

To: Shell

* I am currently on Rebif and have been for 4 weeks

*My first symptom was the blury vision which the eye doctors were telling me they didn't know what was wrong because I had 20/20 vision. Even the opthamologist. They were no help at all. Didn't even tell me I needed to go to my PCP and tell them about this. They were makin me think I was freakin crazy. 6 months later when the naseua, dizzyness, off balance, major cognition malfunctions Lol, not able to walk in a straight line, and more that I jus can't remember right now. With all that said, as soon as I found a new GP I went to my appointment and the next morning he called me and to tell me that he thinks it could be MS. He got me an amazing Neuro, and I had MRI's the next week. So as soon as my neuro saw the MRI's of brain and spine and I went through all the blood tests & heart condition tests I was Dx'd 1 1/2 months later. That was just almost 3 months ago.

*I have had one neuro who saw me from the very beginning and Dx'd me.

jen673

Jul 28, 2011

Your date of diagnosis: April 2011
Type of MS: RRMS
The med, if any you are on: Copaxone
Time for first symptoms to diagnosis: One Month
How many neuros before diagnosis: None

tammy197238

Jul 28, 2011

Date of diagnosis: May 11, 2011
type of ms: ?
Medication: Avonex
Time from first symptom to diagnosis: 3 to 4 weeks
How many neuros to diagnose: 1

TAVL

Sep 06, 2011

Dx aug 2010
Probable ms
Copaxone
6mos after first symptom
1 neuro

Tracey

Sailorsong

Sep 06, 2011

I guess I should finally enter my DX since it has finally happened.

Date of diagnosis: Jan 2011
type of ms: SPMS ( plus Sjogren's syndrome)
The med, if any you are on: CellCept
Time from first symptom to diagnosis: 22+ years
How many neuros to diagnose: 15 ( At the VA you see many Neuros as they rotate in and out)

Dennis'

Doll555

Sep 06, 2011

Dx march 2011
Type of ms don't know...will ask my neurologist
Med. Copaxone daily iv solumedrol monthly
1st obvious symptom sept 2010
Took 2 neurologists before dx, also saw rheumy and pulmonologist

summerluvr

Sep 07, 2011

Your date of diagnosis:  February 4, 2010

Type of MS: Not MS, Multiple Myeloma (bone marrow cancer)

The med, if any you are on:  4 cycles of chemo / high dose steroid (Velcade and Dexamethason), Followed by Stem cell transplant, Currently take an IV bone builder medication called Pamidronate once a month (for at least two years)

Time for first symptoms to diagnosis: 2007-> 3 years later

How many neuros before diagnosis: Saw 2 because of my "carpal tunnel syndrome" who told me I did not have it, but could offer no explanation for numb tingling hands. Told it must be anxiety.(2007).  Later developed more symptoms visual, weakness, bladder, fatique.  Urologist referred me to MS clinic.  The MS Neuro told me I was stressed out, no MS.  Eventually diagnosed with cancer through the ER.  Now I am treated by a  great hematologist, top researcher in MM.

current health status:  Remission, Stable disease (no cure for MM)

SarahL2491

Sep 08, 2011

Date of Dx:  2011

Type:  RRMS

Meds on:  None, neuro will probably pick one this winter, wants to see me again first

Time from First s/s to Dx:  1981 first s/s, then 1993, then 1999, then 2003, you get the drift

Number of Neuro's:  3 so far

Comments:  This forum has kept me from getting discouraged and made me keep going til someone listened

beachcomber13

Sep 22, 2011

Your date of diagnosis: August 25, 2011

Type of MS: ?

The med, if any you are on: no DMD yet, just finished a course of solumedrol

Time for first symptoms to diagnosis: 3 months (but looking back, more like 4 years)

How many neuros before diagnosis: 2

sllowe

Oct 06, 2011

Bump

Date of diagnosis:
Type of MS:
Medication DMD:
Time from first symptom to diagnosis:
How many neuros to diagnose:

kwarendorf

Oct 07, 2011

Date of diagnosis: 9/21/2011

Type of MS:   Relapsing/Remitting

Medication DMD:   None yet

Time from first symptom to diagnosis:   20 years / 2.5 months - First episode was 20 years ago. I didn't really pursue. Then again 2 years ago and didn't really pursue. They both resolved fairly quickly. This time my first symptom was first week of July this year. I pursued and was diagnosed 3 weeks ago.

How many neuros to diagnose: 3 -One suspected and referred me to an MS specialist. He diagnosed but was a nightmare. No on # 3 who is amazing and will help me manage going forward.

Quixotic1

Oct 18, 2011

To: all

Come on! I know we have had more new diagnoses recently!

Fess up!

Mama Quix

sllowe

Nov 21, 2011

THANK YOU to all of our newly diagnosed who posted their Med on the DMD User thread.

Can you please post here too? Thank you much!

Date of diagnosis:
Type of MS:
Medication DMD:
Time from first symptom to diagnosis:
How many neuros to diagnose .

kwarendorf

Nov 21, 2011

Some revised information. My Type has been adjusted and I'm starting a DMD.

Date of diagnosis: 9/21/2011

Type of MS: SPMS

Medication DMD: Tysabri Starting 11/30/2011

ChickenLips

Nov 24, 2011

Date of diagnosis: Nov 18th
Type of MS: not sure
Medication ?

I am awaiting a call from the MS Clinic, suppose I will find out more then.

sllowe

Dec 07, 2011

Bump...Please add:

Date of diagnosis:
Type of MS:
Medication DMD:
Time from first symptom to diagnosis:
How many neuros to diagnose

cjldb

Dec 07, 2011

Date of diagnosis: 10/26/11
Type of MS:   No official word yet, assuming RRMS
Medication DMD:   Copaxone
Time from first symptom to diagnosis:   3 weeks from the time I first saw my PCP. Looking back symptoms probably started in June/July
How many neuros to diagnose: 1

suzi2244

Dec 19, 2011

To: lissalou30

I can look back and see now my first flare up was in 1991. I just wasn't problematic until a year ago. It then took 3 specialists to get a diagnosis in a year.

teenyturner

Dec 19, 2011

Date of Dx.      November 2010
Dx.                  Not MS.     Cu deficiency myelopathy ?
Meds.              IV Copper Sulfate daily every second week.  Have also had
                       5 cycles of chemo and 2nd weekly blood transfusions.
Time to Dx.      2003 to 2010 (neuro part only began February 2010)
Neuros.           1 who got lots of input from hematologist, other neuros,
                       Physician and Prof of Metabolic Medicine.

Jacksmom516

Dec 20, 2011

Date of Dx.      December 13, 2011
Dx.                  RRMS
Meds.              Baclofen, Ampyra and decided on Avonex
Time to Dx.      June 2011 thru December 2011
Neuros.           One neuro but I owe alot to my Ortho who saw something wrong and sent me to a neuro

SarahL2491

Jan 03, 2012

Dx 2011, one lesion on old MRI, they want to do another when pacer battery is being changed out, to see how many more are there.......do I really want to know!

sllowe

Jan 04, 2012

Seems we are getting newly dxers every day.
Please post your info here:

Date of diagnosis:
Type of MS:
Medication DMD:
Time from first symptom to diagnosis:
How many neuros to diagnose:

JaneK1975

Jan 06, 2012

Your date of diagnosis: December 27, 2011
Type of MS: RRMS
The med, if any you are on: Soon to be on Copaxone
Time for first symptoms to diagnosis: Four months, although now that I know I have MS, I believe I had two earlier flare ups (2004 and 2008)
How many neuros before diagnosis: 1 neuro, many doctors. My route to the neuro went like this: Started at my GP, referred to a physical therapist, referred to an orthopedist, and finally referred to my neuro.

thenea

Jan 07, 2012

Date of diagnosis: 1/3/12
Type of MS:  RRMS
Medication DMD:  Soon to be Betaseron
Time from first symptom to diagnosis:  2.5 years
How many neuros to diagnose:   2!  My first was convinced nothing was wrong despite my symptoms.  My 2nd was assigned to me after I had to go to the hospital for diplopia, tingling/numbness/balance issues.

candy158

Jan 07, 2012

Date of Diagnosis : well, depending on which one...LOl but the last one was January 2010 ...

SPMS was my type,
no DMD's as my age is up there, they say it would not help.

7 Neuro's, over 3 years,
Lots and lots of lesions, on brain, but not on brain stem or spine....

Loss of vision, and tingling and unsteady right side, causing me to fall.....

ladydi65

Jan 08, 2012

diagnosed in 2005 with rrms when i had optic neuritis. my ms is mostly sensory so most don't realize or remember i have it. This is fine except i'm still a full time worker and i'm sure my ms has affected my job performance especially since i'm required to work 50 hrs a week. i took avonex for 2 yrs, but couldn't take the side effects anymore. have not had any major relapses since.

Lucia_psy

Jan 09, 2012

Date of diagnosis: 11 January 2011
Type of MS:  RRMS
Medication DMD:  Betaseron
Time from first symptom to diagnosis:  1 month. guess I had symptoms before that, I can't tell if they were MS related
How many neuros to diagnose: one and many other second opinions confirming

jenphilly

Jan 11, 2012

Date of diagnosis: November 14, 2011
Type of MS:  RRMS
Medication DMD:  just started copaxone
Time from first symptom to diagnosis:  the official diagnosis roller coaster started on June 9th and official diagnosis was 5 months later
How many neuros to diagnose: well, it more then just neuros!  My true diagnosis was by an infectious disease specialist because my neuro insisted it was CNS lyme.  The ID doc is who ordered the LP when they put in the picc line for the lyme rocephin antibiotics.  The orig neuro confirmed MS, but was a bit of a weenie, so I found a new neuro who also confirmed MS and we reviewed DMDs and I finally opted for copax.  So how many docs total for me - 1 primary, 2 neuros, 1 ID spec, 1 chiro and 1 back and pain doc...  boy that was a crowded room :)

Jen

fbz

Jan 11, 2012

date of diagnosis: CIS december 2007, definate MS october 2010
Type of MS: RRMS
Medication: started on Betaferon (think it's called betaseron in the US) february 2008, gilenya (fingolimod) since november 2010
Time for first symptoms to diagnosis: optical nerve inflammation april 2007, LP august 2007, multiple MRI's in different machines postponed the diagnosis since it was hard to compare the images. This gives 3,5 years until MS diagnosis.
How many neuros to diagnos: until definate diagnose 3, only 1 until CIS, in between my first neuro got pregnant and I moved to another town.

sllowe

Jan 12, 2012

bump

lilmac91199

Jan 12, 2012

Date of diagnosis: Nov 4, 2011
Type of MS: RRMS
Medication DMD:  Copaxone
Time from first symptom to diagnosis:
How many neuros to diagnose
For those last two that is tricky... I was on active duty. I started showing symptoms in Feb 2004. They found that I had cervical ribs and decided they needed to come out. I had an 8 hour surgery in June 2004 for bilateral decompression due to Thoracic Outlet Syndrome. It made me far worse. I was honorably discharged at the end of my service of 10 years in Jan 2006. I continued having problems. As a disabled vet I was being seen through the VA. They ignored all my issues, even though I kept on them. My oldest sister was DX'd with MS in April 2009 and my other sister was DX'd with Lupus in 2006. Symptoms became so bad this past summer went to an outside neuro. He basically started at square 1, ignoring what the military had DX'd me with. After evoke tests, MRI, and LP...less than 2 months later he DX'd me with MS. He believes the military had it wrong all along. He is currently looking through my military medical record.... I am the baby of the three girls and we all 3 have an auto-immune disorder.

kerrtelli

Jan 12, 2012

To: sllowe

Diagnosed October 2011
Type:  not sure yet, progressing quickly
Medication:  copaxone
Time:  march 2011
How many neuros:  3

sllowe

Jan 25, 2012

Bump for new diagnosed members

sllowe

Jan 28, 2012

bump

DaphneJ

Jan 28, 2012

Dx'd 1/2012
Type: RRMS
DMD: Copaxone
Time from first symptoms to diagnosis: less than a year
2 neuros (Both are wonderful, 1st sent me immediately to MS specialist after MRI/Spinal Tap came back)

sarahw244

Jan 28, 2012

Dx'd in Dec 2011 (not sure if it counts as a real dx though.)
Type: not sure, but was told probably not RRMS
DMD: haven't discussed them yet
First sx to dx: 3-4 years, but I can think of things going back to my teenage years. Some things, too, before the 3-4 years ago that ignored.
2 neuros, was dx'd by a physiatrist who consulted with neuro 2 (like I said, I don't even know if this dx counts).

sllowe

Feb 01, 2012

Bump for newcomers! Please participate!

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