Aa
How long between first symptoms and Dx?
I read Quix's Timeline Health Page.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36
and I'm wondering what's the range of time between when you first started having symptoms of MS and when you were diagnosed with MS?
And yes, there are a couple of other midpoints embedded in that one question. Sometimes (maybe most of the time) you started having very slight symptoms which didn't make any sense at all until years later when things started getting bad and you started getting tested, and then perhaps more years later when you finally got a Dx.
So to clarify my question, can you identify the time span between 4 points:
A = when you first started having symptoms, but nothing made sense.
B = when the symptoms began to pile up and you started getting tests.
C = when your primary care doctor (or maybe yourself) said it looks like MS
D = when some Dr. said that yes, it is MS.
I would guess that very few people go from A to D very quickly; perhaps it's like 20 years in some cases. Right now I'm between C and D, aka, limboland, but I can look back and see some of the symptoms going back at least 10 years. Now, maybe I don't have MS. Fine, then maybe it's something else, but what?
If nothing else, maybe if each of us limbolanders build our own timeline, it might help a Dr. help us sometime sooner rather than later.
Thanks to you all for being here,
TimC
http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36
and I'm wondering what's the range of time between when you first started having symptoms of MS and when you were diagnosed with MS?
And yes, there are a couple of other midpoints embedded in that one question. Sometimes (maybe most of the time) you started having very slight symptoms which didn't make any sense at all until years later when things started getting bad and you started getting tested, and then perhaps more years later when you finally got a Dx.
So to clarify my question, can you identify the time span between 4 points:
A = when you first started having symptoms, but nothing made sense.
B = when the symptoms began to pile up and you started getting tests.
C = when your primary care doctor (or maybe yourself) said it looks like MS
D = when some Dr. said that yes, it is MS.
I would guess that very few people go from A to D very quickly; perhaps it's like 20 years in some cases. Right now I'm between C and D, aka, limboland, but I can look back and see some of the symptoms going back at least 10 years. Now, maybe I don't have MS. Fine, then maybe it's something else, but what?
If nothing else, maybe if each of us limbolanders build our own timeline, it might help a Dr. help us sometime sooner rather than later.
Thanks to you all for being here,
TimC
A I think that sx started about 8 years ago just with fatigue which come and went and the odd bit of tingling..but I alwasy put this down to having had shingles
B A year ago I started having single events at different times several weeks apart - numb small finger, numb half side of face, hearing loss, severe tingling down left side, numb, tingly right arm
C This did not happen as no-one expected it or gave any indication
D My dx was a complete shock as I was being ivestigated for hearing loss and was not at all concerned about small incidents of numbness. My MRi showed lesions and the dx came very quickly after investigations after a few weeks. From onset of first symptoms October 20090 to diagnosis in March 2010 it was 5 months.
Best wishes
Sarah
B A year ago I started having single events at different times several weeks apart - numb small finger, numb half side of face, hearing loss, severe tingling down left side, numb, tingly right arm
C This did not happen as no-one expected it or gave any indication
D My dx was a complete shock as I was being ivestigated for hearing loss and was not at all concerned about small incidents of numbness. My MRi showed lesions and the dx came very quickly after investigations after a few weeks. From onset of first symptoms October 20090 to diagnosis in March 2010 it was 5 months.
Best wishes
Sarah
A = when you first started having symptoms, but nothing made sense.
B = when the symptoms began to pile up and you started getting tests.
C = when your primary care doctor (or maybe yourself) said it looks like MS
D = when some Dr. said that yes, it is MS.
A: May 2006: I noticed a zapping down my spine when I flexed my neck forward, later to learn this is Lhermittes Sign.
June 2006: casually mention the symptom to my GP during a routine visit. He tells me this is a classic and specific symptom of MS and is very concerned. Tells me to get MRI pronto. So, A & C at the same time. WTF???
B: July 2006: have MRIs of brain and c-spine; appear normal. GP is perplexed.
Remission of symptoms for over a year.
B: Sept 2007: onslaught of neurological symptoms over a couple of weeks: exhaustion, Lhermittes, MS hug, numbness and tingling that started in my right pinky finger and spread to both hands and arms, right cheek, neck, scalp; vertigo, dizziness, and finally, severe double vision. Not to be dramatic, but I felt like my body was out of control and that I was dying.
Within a week or two of symptoms, had a repeat MRI of brain and c-spine: lesions on brainstem and c 3, c4 and c5 I think.
B & C: Oct 2007: emergency neuro consult; referred by my GP who suspects myasthenia gravis. Normal EMG; multiple abnormal signs on clinical exam; abnormal lumbar puncture (no O bands though); am told my symptoms consistent with demyelinating disease, likely MS.
D: Nov 2007: first appt at MS clinic; neuro confirms diagnosis of RRMS.
B = when the symptoms began to pile up and you started getting tests.
C = when your primary care doctor (or maybe yourself) said it looks like MS
D = when some Dr. said that yes, it is MS.
A: May 2006: I noticed a zapping down my spine when I flexed my neck forward, later to learn this is Lhermittes Sign.
June 2006: casually mention the symptom to my GP during a routine visit. He tells me this is a classic and specific symptom of MS and is very concerned. Tells me to get MRI pronto. So, A & C at the same time. WTF???
B: July 2006: have MRIs of brain and c-spine; appear normal. GP is perplexed.
Remission of symptoms for over a year.
B: Sept 2007: onslaught of neurological symptoms over a couple of weeks: exhaustion, Lhermittes, MS hug, numbness and tingling that started in my right pinky finger and spread to both hands and arms, right cheek, neck, scalp; vertigo, dizziness, and finally, severe double vision. Not to be dramatic, but I felt like my body was out of control and that I was dying.
Within a week or two of symptoms, had a repeat MRI of brain and c-spine: lesions on brainstem and c 3, c4 and c5 I think.
B & C: Oct 2007: emergency neuro consult; referred by my GP who suspects myasthenia gravis. Normal EMG; multiple abnormal signs on clinical exam; abnormal lumbar puncture (no O bands though); am told my symptoms consistent with demyelinating disease, likely MS.
D: Nov 2007: first appt at MS clinic; neuro confirms diagnosis of RRMS.
Absolutely fascinating! And you might have guessed that I haven't asked this question only for myself. People will be able to read thru this and see that the variation is all over the calendar. Sometimes things move along like molasses in January in Canada and other times like water in January in Australia. Uhh... or something like that.
Keep 'em coming!
TC
Keep 'em coming!
TC
A- (when you first started symptoms)- My first neurological symptoms were almost exactly 1 year ago...November 15, 2009. The other major symptom, but never confirmed as MS, was an episode of complete exhaustion in November 2006 that lasted about 6 months, and again in April 2009 (this was after my last two children were born).
B-(when symptoms began piling up and started tests)- This would have been a month before my initial symptoms started, so Oct 2009. I saw my PCP due to joint pain, exhaustion,and other various weird symptoms. He sent me to a rheumatologist and for blood work and x-rays (which all came back normal).
C-(when PCP said it might be MS)- This was Jan 2010. MS was a thought in my mind, and I saw my PCP while I was waiting to see a neuro for the first time. I expected my PCP, who is a very calm unflappable guy, to say "It could be MS, but it's more likely to be this, this, or this." Instead he examined me and listened to my symptoms and said "I think MS is a possibility." and sent me for an MRI. A month later I saw neuro #1 who looked at the MRI, said I was fine, and implied it was anxiety. A month later I saw my current neuro. He wouldn't even look at the MRI because they were done on a 1.5 T machine by a "sloppy lab". He fought with insurance to get them to approve another MRI on a 3T. He said MS was a good place to start, and once we eliminate that we will move on. After the MRI came back considered normal, he said he was 90% sure this is not MS. By the time he sent me for a LP in early July he was 70% sure it WAS MS. (LP was negative, BTW)
D-(when doctor said yes it's MS)- in mid-August after my second round of vertigo and a 2 millisecond longer delay in my left eye on VEP in 4 months' time. He said he is 80% sure it is MS and that might be the best answer we get.
So, basically 9 months time. I was very lucky.
~Jess
B-(when symptoms began piling up and started tests)- This would have been a month before my initial symptoms started, so Oct 2009. I saw my PCP due to joint pain, exhaustion,and other various weird symptoms. He sent me to a rheumatologist and for blood work and x-rays (which all came back normal).
C-(when PCP said it might be MS)- This was Jan 2010. MS was a thought in my mind, and I saw my PCP while I was waiting to see a neuro for the first time. I expected my PCP, who is a very calm unflappable guy, to say "It could be MS, but it's more likely to be this, this, or this." Instead he examined me and listened to my symptoms and said "I think MS is a possibility." and sent me for an MRI. A month later I saw neuro #1 who looked at the MRI, said I was fine, and implied it was anxiety. A month later I saw my current neuro. He wouldn't even look at the MRI because they were done on a 1.5 T machine by a "sloppy lab". He fought with insurance to get them to approve another MRI on a 3T. He said MS was a good place to start, and once we eliminate that we will move on. After the MRI came back considered normal, he said he was 90% sure this is not MS. By the time he sent me for a LP in early July he was 70% sure it WAS MS. (LP was negative, BTW)
D-(when doctor said yes it's MS)- in mid-August after my second round of vertigo and a 2 millisecond longer delay in my left eye on VEP in 4 months' time. He said he is 80% sure it is MS and that might be the best answer we get.
So, basically 9 months time. I was very lucky.
~Jess
A = when you first started having symptoms, but nothing made sense.
----October 2009 numb toes - thought I was wearing high heels too much, LOL blamed it on the pointy-toe fashion.
B = when the symptoms began to pile up and you started getting tests.
----October 2009 went blind in right eye. ON
C = when your primary care doctor (or maybe yourself) said it looks like MS
----October 2009 sent around to 4 different dr's including an eye foundation hospital and an ms care center.
D = when some Dr. said that yes, it is MS.
----December 2009 for 2nd or 3rd opinion. All concluded 22 brain lesions and 3 spine lesions are concrete evidence for MS.
----October 2009 numb toes - thought I was wearing high heels too much, LOL blamed it on the pointy-toe fashion.
B = when the symptoms began to pile up and you started getting tests.
----October 2009 went blind in right eye. ON
C = when your primary care doctor (or maybe yourself) said it looks like MS
----October 2009 sent around to 4 different dr's including an eye foundation hospital and an ms care center.
D = when some Dr. said that yes, it is MS.
----December 2009 for 2nd or 3rd opinion. All concluded 22 brain lesions and 3 spine lesions are concrete evidence for MS.
A) Probably about 7 years ago with face/ear pain, it was severe, but lasted a short time. My doc thought maybe ear infection, or shingles, couldn't figure it out.
B) about 3 years ago, with vertigo, limp, etc. Doc said get MRI, I didn't, symptoms went away.
C) 2 years ago with Optic Neuritis. PCP thought MS, sent to Neuro.
D) about 1 year with MS neuro ruling things out. Official DX April 10, 2009.
Michelle
B) about 3 years ago, with vertigo, limp, etc. Doc said get MRI, I didn't, symptoms went away.
C) 2 years ago with Optic Neuritis. PCP thought MS, sent to Neuro.
D) about 1 year with MS neuro ruling things out. Official DX April 10, 2009.
Michelle
Your A - D
A = when first started having symptoms:
Any symptoms in past were not 'giant' so I disregarded them or chalked them up to
other reasons.
B = when the symptoms began to pile up and you started getting tests:
For me it was more like the s*h*t hit the fan in March of 07.
C = when your primary care doctor (or maybe yourself) said it looks like MS:
Doc said classic stress, but ordered MRIs, labs, etc. March/April 07.
Lined up a neuro on my own May/June 07.
D = when some Dr. said that yes, it is MS:
Neuro said MS. 2nd opinion neuro said MS June/July 07.
Hope this helps!
-Shell
A = when first started having symptoms:
Any symptoms in past were not 'giant' so I disregarded them or chalked them up to
other reasons.
B = when the symptoms began to pile up and you started getting tests:
For me it was more like the s*h*t hit the fan in March of 07.
C = when your primary care doctor (or maybe yourself) said it looks like MS:
Doc said classic stress, but ordered MRIs, labs, etc. March/April 07.
Lined up a neuro on my own May/June 07.
D = when some Dr. said that yes, it is MS:
Neuro said MS. 2nd opinion neuro said MS June/July 07.
Hope this helps!
-Shell
A - about 25 years ago ( dropping things, walking into walls, etc. )
B - 21 years ago (Severe cognitive problems, numbness in leg,, etc. )
C - about 5 years ago PC and several other doctors said it looks like I have MS.
D - Still waiting for a definite DX but one Neuro has said I probably had RRMS which has now become SPMS. ( was about 2 years ago ).
Dennis
B - 21 years ago (Severe cognitive problems, numbness in leg,, etc. )
C - about 5 years ago PC and several other doctors said it looks like I have MS.
D - Still waiting for a definite DX but one Neuro has said I probably had RRMS which has now become SPMS. ( was about 2 years ago ).
Dennis
COMMUNITY LEADER
A= I was in my mid to late 20's, started having blurry vision and trouble getting my eyes to stay focused, told to stop reading so much I had 20/20 vision. At 29 I had my tonsils out, didn't help but specialist believed my vision issue was connected my tonsils poisoning me, all would come good when they came out. Ahhh how dumb that seems now lol
B= 2003 when i couldn't push through it anymore, though none for MS, GP stuck on diet lol
C= I said MS in early 09 when i first started walking like a string puppet, stuttering etc etc Oct 2010 my new GP stated MS or motor neuron disease and my heart nearly stopped in shock, id purposely avoided any mention of what I thought it was, I wanted fresh eyes.
D= A disasterous neuro appt and my GP is still saying its MS and told us not to go back to that neuro, and we're still gathering evidence that can't be disputed. DH needed to hear it more than I did. So dx with a long list of MS (clinical) sx but not yet dx with MS or one of its mimics.
Cheers....JJ
B= 2003 when i couldn't push through it anymore, though none for MS, GP stuck on diet lol
C= I said MS in early 09 when i first started walking like a string puppet, stuttering etc etc Oct 2010 my new GP stated MS or motor neuron disease and my heart nearly stopped in shock, id purposely avoided any mention of what I thought it was, I wanted fresh eyes.
D= A disasterous neuro appt and my GP is still saying its MS and told us not to go back to that neuro, and we're still gathering evidence that can't be disputed. DH needed to hear it more than I did. So dx with a long list of MS (clinical) sx but not yet dx with MS or one of its mimics.
Cheers....JJ
A = when you first started having symptoms, but nothing made sense.
B = when the symptoms began to pile up and you started getting tests.
C = when your primary care doctor (or maybe yourself) said it looks like MS
Feb 2006 kept falling down leg just wasn't there.
thought i jammed hip. only place that hurt and always landed hard on knee but only felt jamming in hip.
PCP didn't know and said it might be MS. ordered MRI insurance wouldn't pay without neuro ordering. I'm saydoc its my hip. docs are say head. so figure.
still at this point after 4 years. more symptoms and neuro says 'normal for people with MS.
D = when some Dr. said that yes, it is MS.
B = when the symptoms began to pile up and you started getting tests.
C = when your primary care doctor (or maybe yourself) said it looks like MS
Feb 2006 kept falling down leg just wasn't there.
thought i jammed hip. only place that hurt and always landed hard on knee but only felt jamming in hip.
PCP didn't know and said it might be MS. ordered MRI insurance wouldn't pay without neuro ordering. I'm saydoc its my hip. docs are say head. so figure.
still at this point after 4 years. more symptoms and neuro says 'normal for people with MS.
D = when some Dr. said that yes, it is MS.
Probably about three years ago I started feeling unwell, vision problems. Started seeing doctors.
Symptoms kept coming more and more, saw an MS spcialist for a year who kept saying nothing wrong.
Last winter got acutely sick, and was finally diagnosed with multiple myeloma, not MS, Had a stem cell transplant in June, and am now in remission!
someone posted a link for an article about living with chronic disease. The aticle said the average time to get diagnosed is about 2 years, so in that case I am a bit longer then average, but I was quite sick for the third year.
Symptoms kept coming more and more, saw an MS spcialist for a year who kept saying nothing wrong.
Last winter got acutely sick, and was finally diagnosed with multiple myeloma, not MS, Had a stem cell transplant in June, and am now in remission!
someone posted a link for an article about living with chronic disease. The aticle said the average time to get diagnosed is about 2 years, so in that case I am a bit longer then average, but I was quite sick for the third year.
In 1965 my parents were told there was something seriously neurologically wrong but the Doctors at the Mayo could not figure it out.
In 1970 Duke Doctors said I had something wrong with my brain stem causing permanent double vision and other problems.
In 1978 Doctors said there was some neurological damage in my brain interupting signals.
In 2007 my Primary Care looked very concerned at my yearly physical after doing a basic neurological exam.
From 2007-2009 I went to a series of Neurologists who mostly said I would be diagnosed with MS.
In April of 2009 I was diagnosed with RRMS
In February 2010 I went to an MS Specialist at Duke and was diagnosed with PPMS and he said I had it my whole life. So my journey was basically 45 years.
In 1970 Duke Doctors said I had something wrong with my brain stem causing permanent double vision and other problems.
In 1978 Doctors said there was some neurological damage in my brain interupting signals.
In 2007 my Primary Care looked very concerned at my yearly physical after doing a basic neurological exam.
From 2007-2009 I went to a series of Neurologists who mostly said I would be diagnosed with MS.
In April of 2009 I was diagnosed with RRMS
In February 2010 I went to an MS Specialist at Duke and was diagnosed with PPMS and he said I had it my whole life. So my journey was basically 45 years.
A. 15 Months ago
B. 11 Months ago
C. 8 Months ago
D. 3 months ago w/PPMS, BUT I have had diagnosis taken away and given back several times now.
B. 11 Months ago
C. 8 Months ago
D. 3 months ago w/PPMS, BUT I have had diagnosis taken away and given back several times now.
A = when you first started having symptoms, but nothing made sense. Guess it was about 3 1/2 years ago
B = when the symptoms began to pile up and you started getting tests.September of 2008 started going numb and tests followed
C = when your primary care doctor (or maybe yourself) said it looks like MS When all the numbness started, have sister with MS
D = when some Dr. said that yes, it is MS. September of 2010 my neuro finally said it is MS
B = when the symptoms began to pile up and you started getting tests.September of 2008 started going numb and tests followed
C = when your primary care doctor (or maybe yourself) said it looks like MS When all the numbness started, have sister with MS
D = when some Dr. said that yes, it is MS. September of 2010 my neuro finally said it is MS
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