MS Timeline for MS Specialist appt

[kerrtelli]

Hello everyone.  I hope you are all enjoying the memorial day weekend.  I have a feelings lots of us are feeling the heat.

I am posting my timeline of symptoms i have put together for the specialist.  I am seeing him Wednesday and am very apprehensive.  I just want to clear and concise.  I have tried to put together only facts and no emotion.

I appreciate anyone who can review and give me tips or advice.  I am also putting together a list of questions to ask.  I am worried what to say to him if he questions my symptoms or blows me off.  Everyone i have spoken to in the medical field and pwms have said they would be very surprised if he didn't show concern about possible ms.
But that doesn't mean anything when i am sitting there with him all choked up.


Timeline of Symptoms for MS Specialist

1991
Measles

1993
Extreme dizziness
Blurry vision
Unsteady gait
CT scan, eye exam with no adverse neurological findings.
Diagnosed with Vertigo due to Epstein Barre.
Eye doctor seen for floaters.
Told to wear glasses while using computer.
Symptoms subside

1994
Heart palpitations
24 hour monitor/portable EEG
No relevant findings.  No further palpitations.

1999
Birth if first child.
Sciatica, normal birth

2000
Birth of second child
Sciatica, normal birth

2002
Birth of third child
Sciatica, normal birth
Gestational diabetes

2003
Gastro problems
sent for endoscopy and other exams.
No abnormal findings.  
Diagnosed with IBS.  Given antidepressant.
Symptoms subside.
Sinus surgery

2004
Kidney stones
ER visit
Passed stone
Symptoms subside

2005
Unexplained seizure activity
Tremors
dizziness
balance issues
Blurry vision.
First MRI with contrast performed.
Report included.  No further testing.  
Told to not worry about lesions.
Seizure activity subsides
full recovery within three months

Referred for eye exam due to blurry vision.
Vision perfect
No explanation
Symptom subsided.

2006
Brother dies in car crash.

2007
Birth of fourth child.

2008
Tubal libation and varicose vein removal.

2009
Bout of bloody stool
ER visit
Had colonoscopy.
Sessile polyps found and removed.

2010
ER visit.  
Severe concussion from banging head on table in the home.
ER visit.  
Second degree burns from cooking accident in the home.
ER visit.  
Severe vertigo.  
Given intravenous medication and sent home.
Vertigo subsided.

2011
February to March
New symptoms begin
Numbness, spasms and tingling in calves at night.
Co-workers began noticing change in energy level at work and more confusion.
Last week of march
Leg issues at night continue but start to become noticeable during the day.
Become extremely fatigued in late afternoon.

April 1
Episode begins
Gait becomes unsteady
Foggy thinking
dizziness
cannot recall words
Extremely fatigued.
Sent to Danbury ER.
ER doc administers neuro exam abnormal .
Orders CAT Scan.  Test is normal.
Blood tests come back normal.
Admitted for further testing
Hospital does ultrasound of legs which are normal.
Told to follow up with neurologist

April 3
Physical therapy discharges with walker

April 6
Physician assistant orders additional blood work
Order MRI without contrast to rule out MS.
MRI included
PA instructs me to find neurologist

Last week of April.
Become increasingly less mobile
Must use cane to walk.  
Left side seems more affected.
In jeopardy of losing job.
Hours shortened at school due to symptoms that have affected work.

First week of May
Slight remittance of symptoms
Slight spasms
Gait less steady walking longer distances

Second week of MAY
Symptoms of sleep apnea begin

Saturday May 14
Electric shocks and constipation

May 16
Visit to physician assistant
Sleep study should be considered

May 19
Jolts of electric shock
Appt with general physician Friday

May 20
Appt APRN
Abnormal neuro exam
Symptoms present as MS
Defer to neurologist

May 24
Sleep Specialist
Possible sleep apnea
Study set up

May 25
Sleep study
No further information
Follow up appt June 1

Well, that's it.  Is it too much?
As usual thank you all for your help.  I don't know how I would have gotten through these last few months without this forum.  It is truly a blessing.
Kerri

[HVAC]

Yes you can ask about medications for symptoms by all means. It is not that women are more emotional it is just we are perceived differently. We just have to play the game.

But then there is me I am stoic so Doctors do not get me at all. If another  person could not move with pain I do not look like I am in pain at all. Since I am a woman who does not show pain I  am ignored all together.

My husband has to tell the Doctor how sick I am and then they believe him, go figure. One time after being ignored for four months my husband called the Doctor. He said rush her in and we will do emergency surgery today.

It is not right but it is the way it is. My Gynecologist says it is because no one knows how the female body works let alone its nuiances with common ailments.

Good luck. Keep the faith.

Alex

[kerrtelli]

THANKS SOOO MUCH.  That is exactly what i was looking for.
I will edit the timeline and take your advice about the secondary sheet for intake.  Thanks also for the tips about letting them do their thing.  I know that women can be extremely emotional.  I will have my husband with me and I know he'll keep me under control and I am sure the specialist will ask him questions also.

Is it okay if i ask about medication for my current symptoms?
I know neuros can be touchy.

Thanks again.
Kerri

[HVAC]

Okay this is my take. These are only suggestions


Timeline of Symptoms for MS Specialist

1991
Measles (probably consider this irrelevant)

1993
Extreme dizziness
Blurry vision
Unsteady gait
CT scan, eye exam with no adverse neurological findings. ( CT's show nothing to Neurologists only MRI's)

Diagnosed with Vertigo due to Epstein Barr
Eye doctor seen for floaters. ( most people have floaters not an MS thing)
Told to wear glasses while using computer. (Not relevant)
Symptoms subside

1994
Heart palpitations ( not Neurological)
24 hour monitor/portable EEG ( Do you mean EKG? not relevant) EEG is brain, never heard of portable wires all to head?
No relevant findings.  No further palpitations.

1999
Birth if first child.
Sciatica, normal birth ( not relevant to neurology)

2000
Birth of second child
Sciatica, normal birth ( not relevant)

2002
Birth of third child
Sciatica, normal birth
Gestational diabetes  ( all not relevant)

2003
Gastro problems
sent for endoscopy and other exams.
No abnormal findings.  
Diagnosed with IBS.  Given antidepressant.
Symptoms subside.
Sinus surgery  ( none of the neurological)

2004
Kidney stones
ER visit
Passed stone
Symptoms subside ( none of this relevant either)

2005
Unexplained seizure activity
Tremors
dizziness
balance issues
Blurry vision.
First MRI with contrast performed.
Report included.  No further testing.  
Told to not worry about lesions.
Seizure activity subsides
full recovery within three months  (This is all relevant)

Referred for eye exam due to blurry vision.
Vision perfect
No explanation
Symptom subsided.  ( may be relevant )

2006
Brother dies in car crash. ( not relevant)

2007
Birth of fourth child. ( not relevant)

2008
Tubal libation and varicose vein removal. ( not relevant)

2009
Bout of bloody stool
ER visit
Had colonoscopy.
Sessile polyps found and removed. ( not relevant)

2010
ER visit.  
Severe concussion from banging head on table in the home.
ER visit.  
Second degree burns from cooking accident in the home.
ER visit.  
Severe vertigo.  
Given intravenous medication and sent home.
Vertigo subsided.  ( all relevant)

2011
February to March
New symptoms begin
Numbness, spasms and tingling in calves at night.
Co-workers began noticing change in energy level at work and more confusion.
Last week of march
Leg issues at night continue but start to become noticeable during the day.
Become extremely fatigued in late afternoon. (relevant)

April 1
Episode begins
Gait becomes unsteady
Foggy thinking
dizziness
cannot recall words
Extremely fatigued.
Sent to Danbury ER.
ER doc administers neuro exam abnormal .
Orders CAT Scan.  Test is normal.
Blood tests come back normal.
Admitted for further testing
Hospital does ultrasound of legs which are normal.
Told to follow up with neurologist  ( relevant)

April 3
Physical therapy discharges with walker (relevant)

April 6
Physician assistant orders additional blood work
Order MRI without contrast to rule out MS.
MRI included
PA instructs me to find neurologist (relevant)

Last week of April.
Become increasingly less mobile
Must use cane to walk.  
Left side seems more affected.
In jeopardy of losing job.
Hours shortened at school due to symptoms that have affected work. ( relevant )

First week of May
Slight remittance of symptoms
Slight spasms
Gait less steady walking longer distances ( I would leave words like gait and remitting out they make it sound like you get on the internet and are diagnosing yourself many Doctors will dismiss what you say on that account)  Say symptoms lessen and walking less steady.

Second week of MAY
Symptoms of sleep apnea begin

Saturday May 14
Electric shocks and constipation

May 16
Visit to physician assistant
Sleep study should be considered

May 19
Jolts of electric shock
Appt with general physician Friday

May 20
Appt APRN
Abnormal neuro exam
Symptoms present as MS
Defer to neurologist

May 24
Sleep Specialist
Possible sleep apnea
Study set up

May 25
Sleep study
No further information
Follow up appt June 1

Well, that's it.  Is it too much?
As usual thank you all for your help.  I don't know how I would have gotten through these last few months without this forum.  It is truly a blessing.
Kerri


Have all your general surgeries, babies , illness, on a sheet in case they ask for them on intake forms. Don't have every medical thing that ever happened or they tend to go towards you being a female who worries too much about health issues.

Neurologists are only interested in what pertains to Neurology. They are just the facts mam types. They are also dubious of those who self diagnose on the internet.

The best approach is let them do their thing quetly then have your timeline and write down questions you may have it is easy to forget. Do not hit them with lots of things at once. Try not to be emotional. We women are looked at as it being in our heads more often than not so do not give them any ammunition. Also do not tell them what tests to preform. Most hate that. They may not say much this is not a dismissal

The way diagnosing MS works is they go by the McDonald Criteria which is on the top right under health pages. Time lines are there as well. Very few people get a diagnosis quickly. It is a diagnosis of excluding all possibilities so if you throw in a lot of other health issues that makes it harder to sort out.

They usually follow you over time so if they say come back in three or six months that is not a dismissal. They may do a ton of different blood tests to rule out other illnesses. There are over 800 Neurological syndromes and over 30 other mimics.

I showed clear MS from the first MRI and it took me two years and many Neurologists all saying I would be diagnosed with MS until I was diagnosed. All my tests were abnormal for MS and all my blood work was negative for everything else but I still was followed over time.

This was truly confusing to me. I thought this is serious shouldn't they be diagnosing me and treating me right away? Now I know some people are diagnosed right away others it can take a long time.

You do not have MS until you do. It is weird but that is the way it works.

Alex