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147426 tn?1317265632

Who is Diagnosed?

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
236 Responses
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5112396 tn?1378017983
Date of Diagnosis:
09 January 2011

Type of MS:  
Relapsing-Remitting

Medication DMD:  
Either Interferon β-1a IM (Avonex) or Daclizumab High-Yield Process
I'm on a double-blinded drug trial, so I don't know which one

Time from First Symptom to Diagnosis:  
1 month, twenty days
20 November 2010 Hospitalised with internuclear opthalmoplegia. Tests conducted, narrowing the list of 'possibles'.
9 January 2011 Optic neuritis with full scotoma sealed 'time and space' MacDonald Criteria requirements.  

How Many Neurologists to Diagnose:
I was first seen as an in-patient, so I would have had multiple neurologists to start-  between those on weekday ward duty, those on the weekend, the head of department, the research fellows, etc. But they all zeroed in on Multiple Sclerosis from the get-go.
Helpful - 0
Avatar universal
Oops, forgot to mention that the diagnosis came after decades of searching and seeing about 15-20 specialists.  A neurologist in the neuro department of one of the nation's leading hospitals even wrote in my chart that I was back, again, with my spinal MRIs.  I kept insisting that there were lesions on them.  The neuro basically wrote something like there, indeed, may be spots, but, that the quality of the MRIs were too poor to tell and also told me that I should have the next one run at that hospital.  However, the neurologist refused to order it to check for MS.  

Too many problems to keep working.  Showed films to a neuroradiologist that agreed with me that I did indeed have what appeared to be lesions and transverse myelitis.  I have had recurrent transverse myelitis since then.  That was about a decade ago.

Another neuro tried to tell me that I needed to see a shrink and that this was in no way MS as you had to have lesions on the brain MRI for it to be MS (which I was told I did not have).  I was told that my symptoms were not a big deal and that all I had was a little myelitis and that was gone now.  Turns out I had multiple lesion of varying size in the cervical cord.  At least one was about 7 mm and I was also diagnosed with transverse myelitis.

That neuro said that noone could know as much medicine without being a doctor.  I asked him if he thought I was a well-read hypochondriac.  He wrote a note for me to see a shrink.  He told me that noone has that many symptoms. I am not a doctor but had certifications, medical training and graduate science courses.   I asked the neuro if he was aware of my background.  When he found out I had an extensive medical background and my technical work in research had been published in JAMA he said, "Oh,well in that case I just don't know."

Months later with a new neuro I was diagnosed  That neuro said that I was not crazy..  It infuriates me how so many people with immune disorders and other conditions are treated and dismissed by the "so-called" experts

Those patients lack effective damage-preventing treatment and are further mentally and socially isolated.  This causes additional stress and possibly activates their immune system and symptoms even all the more.  And then, the stigmatism still continues because of what was originally in their medical chart.  It can be a very "vicious" cycle.

May God give us all the strength to find the answers we need and the ability to do as best we can for each other and ourselves.

Thanks for your time.
Helpful - 0
Avatar universal
Diagnosed 2008 by neuro, 2009 by MS Center, Just found out MS specialist wrote in 2010 that my MS was confirmed because of active lesion.  Funny, it was then that he told me my problems were due to my "spinal cord disease" when I mentioned that it would appear to be my "MS" causing the symptoms. Complicated by fact that I had a syrinx as well masking my symptoms.  Neuros thought possibly was Devic's.  Syrinx seems to have emptied since a hit and run driver ran me down.
Copaxone.
Possibly decades.  
Helpful - 0
Avatar universal
Date of dx: 8/26/2011

Type: RRMS

DMD: Suppose to be on Copaxone, currently working on trying to get back on it

Time of first symptom to diagnosis: Maybe a month. After some major stressers (death in the family, depression over some things, financial trouble, family issues) I had some symptoms that I kept to myself then some numbness and it went away after a trip to the chirpractor. A week later I had numbness on the other side which then turned into visions issues and the worst headache I've ever had. So I went to the ER and was diagnosed maybe 5 hours later.

How many nueros: I guess one, I was officially told by the ER nurse practioner that I had it. I saw a nuero that night, had a spinal tap while in the hospital and 3 weeks later got the official confirmation since my LP showed the bands.

It was a big shock, but hearing how some of you have to wait years and years for a diagnosis, I'm glad how it happened. My hearts goes out to everyone that is in limbo and hope you can get a diagnosis soon.
Helpful - 0
4446427 tn?1371214718
Date of diagnosis: Oct 2010 dx'd with "probable MS but atypical". Jan 2013 received a formal dx of MS.
Type of MS:   RRMS
Medication DMD:   Rebif RebiSmart - starting 22nd Jan 2013. Not sure what dose yet.
Time from first symptom to diagnosis:  2 months from first symptom to "probable MS" dx. 2 years after that I got the formal dx.
How many neuros to diagnose. I saw one with my first sx. She referred me straight to an MS neuro and I haven't seen anyone else since.
Helpful - 0
Avatar universal
Hello,

I am 37 and been diagnosed with ms about year and a half ago. It took over a year to diagnosed with 3 Nero opinions. All came up with ms, I suffer from tiredness, dizziness, numbness, swallowing issues , pain, lots if body pain, memory loss, tremors, handwriting has changed drastically, ms hugs, losing feeling in limbs, seeing black spots and this is just things off the top of my head. I just started avonex this last Friday night, that was a mentally hard one! I pre medicated and sat. Felt pretty horrible, today Sunday I'm feeling better. I also have a low vitimain d, I take 50,000 iu 3 times a week, I struggle with that often. I had a low b-6 level that is now maintained with supplement. I have thyroiditis that my endocrinology dr says can be caused by ms. I have so far had one wing removed. I am anemic, tomorrow afternoon I get infusions of iron, which is better than a transfusion. I was diagnosed by process of elimination and a brain MRI. Foci in the bunches, lesion in white matter of brain. Ruled out any other possibilitys of brain lesions and other symptoms. I have has every test under the son. I have gotton much worse in last couple year, ms is day to day in my life reminding me what I have been dealt:( has anyone else dealt with anemic with ms? Thyroid issues ? B-6 and d vitimain difficiacys ect . I yeah wanted to mention, Fridays avonex was only 1/4 dose, this Friday 1/2 dose , the 3/4 dose then full!! Yikes ! And then changing to pen! Anyone have that experience ? Thank u and god bless:)
Helpful - 0
Avatar universal

Date of diagnosis:   March 2011
Type of MS:   Secondary progressive
DMD:   tysabri
Time from first symptom to diagnosis:   6 months
How many neuros to diagnose: 1 ms neuro
Helpful - 0
198419 tn?1360242356
If you've not already done so, please add your info here:

Date of diagnosis:  
Type of MS:  
DMD:  
Time from first symptom to diagnosis:  
How many neuros to diagnose:
Helpful - 0
Avatar universal
Date of diagnosis: About 7 years ago
Type of MS:   Relapsing Remitting
Medication DMD:   Copaxone
Time from first symptom to diagnosis:   Approximately 6 months
How many neuros to diagnose: .3
Helpful - 0
Avatar universal
Diagnosed April, 2011
Type: secondary progressive
Dmd: Copaxone
Time from first symptom to diagnosis: Decades
How many neuros:  too many for me to remember
Helpful - 0
2015036 tn?1332997788
Date of Dx:  July 2011
RRMS transitioning into SPMS
Dmd's to date:  Rebif, Copaxone, and now Avonex.
Years to Dx:  A little over two years since doctors became interested in my symptoms, but with a about 16 years of history behind them.
Two Neurologists to dx.
Helpful - 0
Avatar universal
It would be useful to compile this data into an excel spread sheet and attach to this thread.
this may be more useful for comparison purposes.

Helpful - 0
1781490 tn?1318651465
October 2012
RRms for insurance
Prms probably had symptoms 20
2 years and 5 doc
Sjogrens too
Helpful - 0
1734735 tn?1413778071
Date of diagnosis: 4 Aug 2011
Type of MS:   RRMS at this stage
Medication DMD:   Copaxone
Time from first symptom to diagnosis:   three months
How many neuros to diagnose . One
Helpful - 0
198419 tn?1360242356

Please post your info here:

Date of diagnosis:
Type of MS:  
Medication DMD:  
Time from first symptom to diagnosis:  
How many neuros to diagnose
Helpful - 0
2078115 tn?1333926565
Date of diagnosis: CIS - early 2011
                           MS - March 8 2012 (officially, but I already knew long before)

Type of MS:  RRMS

Medication DMD:  Rebif - April 17 2012

Time from first symptom to diagnosis:  Original symptom/diagnosis - Bells Palsy [mid 2010] Then CIS/MS [early 2011]

How many neuros to diagnose: One. Then transferred to a second at the MS clinic.
Helpful - 0
1981227 tn?1336328438
Date of diagnosis: Official was 11th of april 2012. My PCP said MS back in Jan 2012 and all the tests came back positive with a Pos LP and lesions in my brain and spinal cord.
Type of MS: RRMS  
Medication DMD:  Will be starting copaxone soon
Time from first symptom to diagnosis:  About 4 months (but think I had my first relapse back in jan 2009, but my doc back then said it was sciatica... yeah sciatica in my leg and ARM too huh??)
How many neuros to diagnose . . just the one
Helpful - 0
Avatar universal
CORRECTION: I never saw a Neuro before my diagnosis. Totally misread that, chalk up to my cog fog :-)
Helpful - 0
Avatar universal
Your date of diagnosis: Feb 28, 2012
Type of MS: RRMS
The med, if any you are on: Rebif
Time for first symptoms to diagnosis: At least 3 months in my big attack. 1 ER visit, Dx 2 days later in hospital. Hindsight - 8yrs having Sx and not knowing what was wrong, attributed to allergies!
How many neuros before diagnosis: 1

Helpful - 0
198419 tn?1360242356
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
Helpful - 0
Avatar universal
reposting, adding medication:


Date of Dx:  2011

Type:  RRMS

Meds on:  Tysabri, baclofen

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
Helpful - 0
1781490 tn?1318651465
Nov 2010.
Have had for 10 yrs wo realizing
4 neuros
Prms
Rebif
Helpful - 0
1475492 tn?1332884167
Your date of diagnosis: 3/2012
Type of MS: RRMS
The med, if any you are on:  Avonex
Time for first symptoms to diagnosis: nearly 2 years
How many neuros before diagnosis: I had seen 2 general Neuro's under a radiology report with missed lesions. I saw a MSologist who also missed the lesion on that radiology report. Eventually I left the county and sought an independent MSologist who saw the lesion and started observation, tests. Neuro-Ophth and a Neuro-Otologist are part of this team. My path ended in a DX with a flare with ON and IVSM just prior to seeking a 2nd opinion. In the end, I opted to stay with my 2nd opinion as she fit much better with my needs and personality.
Helpful - 0
198419 tn?1360242356
Bump for newly dx'd
Helpful - 0
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