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Talk to me about multiple sclerosis


Dmmetler
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Sorry about this scary time.

MS can have varying severity and rate of progression. Some people get diagnosed because they are having vision issues and then not much else in the way of symptoms for years. Others like my friend go from Dx to death from MS complication in a matter of just a few years - she was 20 when diagnosed and died at 24.  And there's everything in between.  A friend of mine was Dx'd at 55 and at 58 she starting a nursing program, and last I spoke with her (she would have been 65?) she was doing great, just minor spasms. It's not terribly predictable, or terribly treatable. And not knowing makes things hard to deal with :-(

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It tend to be characterized by deteriorations in physical function and then plateaus.  

It's very unpredictable.  There are treatments to stabilize it now, but doctors vary a lot in how aggressively they treat it.

I have a friend who has had it for 23 years.  She is very sensitive to environmental temperatures that are on the hot or cold side--needs it mild all the time.  And she has to rest a great deal.  But she is still working as a public school teacher and doing fine with that.  

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There are 4 types of MS, varying in severity and rate of progression: 1) Clinically Isolated Syndrome, 2) Relapsing/Remitting, 3) Secondary Progressive, and 4) Primary Progressive. MS is notoriously hard to diagnose and sometimes can take a year or two before the diagnosis is clear. In the meantime, it's a bit of a roller coaster ride. MultipleSclerosis.net is a good resource as is the Multiple Sclerosis Society of America.

I was finally diagnosed with Primary Progressive MS last fall after 3 years of tracking symptoms with my MS doc. If I can be of help, please PM me.

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MS, in my experience, is as varied as people.  DH had a co-worker who took interferons, he had mild symptoms and was just trying to slow overall progression.  He died within a few years, with very young children, from complications of interferon treatments.  I have an acquaintance who was diagnosed, took interferons and quit treatments, she maintains work and home five years later.  My sons coach has a progressive MS and is becoming disabled at a very quick rate, she is on disability within a year of diagnosis.  I was able to ignore my diagnosis it up until the last year or so.

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25 minutes ago, Ethel Mertz said:

There are 4 types of MS, varying in severity and rate of progression: 1) Clinically Isolated Syndrome, 2) Relapsing/Remitting, 3) Secondary Progressive, and 4) Primary Progressive. MS is notoriously hard to diagnose and sometimes can take a year or two before the diagnosis is clear. In the meantime, it's a bit of a roller coaster ride. MultipleSclerosis.net is a good resource as is the Multiple Sclerosis Society of America.

I was finally diagnosed with Primary Progressive MS last fall after 3 years of tracking symptoms with my MS doc. If I can be of help, please PM me.

I'm not the original poster but tell me, did you have a negative mri at some point along the line? I had a crazy neurological episode myself this last fall and a negative mri. I still don't know what caused my symptoms and while they're mostly gone they're still there a little.

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3 minutes ago, rose said:

I'm not the original poster but tell me, did you have a negative mri at some point along the line? I had a crazy neurological episode myself this last fall and a negative mri. I still don't know what caused my symptoms and while they're mostly gone they're still there a little.

 

Yes. Have you had a lumbar puncture yet? (aka spinal tap) The test that cinched my diagnosis wound up being done by a urological neurologist (referred to by my MS doc) which measured spasms in my bladder. 

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A dear friend of mine has it.  She has been diagnosed with it for over 10 years.  She has been doing a special supplement routine her doc recommended as she is very sensitive to meds.  She also has a exercise routine that she does everyday.  DF is very active as it was stressed by her specialist to stay as active as possible and it seems to be working for her.  Her advice is to find the team of doctors that works with you not ones who don’t see you as a person.  She fired a tip neurologist as he didn’t see her a person just her diagnosis.

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Thank you. I don’t know that MS is where the DX will end up, but we have a 19 yr old with significant, fairly sudden onset neurological symptoms (although she has had headaches and vision disturbances on and off for some time that I now suspect were more severe than she let on), and so far, the MRI and other tests are leading them in that direction. At first, we thought she had had a stroke. Spinal tap today. She’s at a teaching hospital right now. This is a kid who was training with the college cheer team Tuesday, in preparation for tryouts, and preparing for her DE finals and high school graduation. 

I am terrified for her. I have chronic neurological issues, but mine are non-progressive, and when I have a bad day, I know that a good day is coming. She has gone from doing backflips after being tossed in the air to being unable to walk to the bathroom without assistance. 

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12 hours ago, itsheresomewhere said:

A dear friend of mine has it.  She has been diagnosed with it for over 10 years.  She has been doing a special supplement routine her doc recommended as she is very sensitive to meds.  She also has a exercise routine that she does everyday.  DF is very active as it was stressed by her specialist to stay as active as possible and it seems to be working for her.  Her advice is to find the team of doctors that works with you not ones who don’t see you as a person.  She fired a tip neurologist as he didn’t see her a person just her diagnosis.

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I would echo this. I don't know a lot about the disease, but my aunt who has it has been treated very poorly by some of her doctors. Given that MS flares can cause mood issues, you don't need negativity on top of challenges.

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10 hours ago, dmmetler said:

Thank you. I don’t know that MS is where the DX will end up, but we have a 19 yr old with significant, fairly sudden onset neurological symptoms (although she has had headaches and vision disturbances on and off for some time that I now suspect were more severe than she let on), and so far, the MRI and other tests are leading them in that direction. At first, we thought she had had a stroke. Spinal tap today. She’s at a teaching hospital right now. This is a kid who was training with the college cheer team Tuesday, in preparation for tryouts, and preparing for her DE finals and high school graduation. 

I am terrified for her. I have chronic neurological issues, but mine are non-progressive, and when I have a bad day, I know that a good day is coming. She has gone from doing backflips after being tossed in the air to being unable to walk to the bathroom without assistance. 

This is developing much (much, much) more quickly than MS, so I'm sure they'll find something else causing her symptoms. And if they diagnose MS, I'd be sure to get a second opinion. It is very good that she is at a teaching hospital. I'd take a lot of comfort in that if it were my child.

How very frightening; praying that the problem is found quickly. <3

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3 hours ago, ThisIsTheDay said:

This is developing much (much, much) more quickly than MS, so I'm sure they'll find something else causing her symptoms. And if they diagnose MS, I'd be sure to get a second opinion. It is very good that she is at a teaching hospital. I'd take a lot of comfort in that if it were my child.

How very frightening; praying that the problem is found quickly. <3

They were sure my son's coach was having a stroke, her symptoms were that quick and that severe.  An "explosive onset in multiple areas of the CNS" can occasionally happen with the first presentation of MS, especially in younger people.  I wouldn't completely rule out MS based on the description, but second and even third opinions can be helpful at that age.

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We still don’t have an answer. She has multiple neurological signs that point to possible causes, but don’t actually seem to be what the cause is. She is regaining more sensation, but very limited mobility, and is experiencing a lot of pain. They were originally talking about discharging her yesterday to physical  therapy and additional outpatient testing,  but the idea of leaving the hospital without an answer pushed her into hysteria. It’s just a lot for a teen to deal with. She may be 19, but she’s still a very scared little girl. 

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I have been trying to figure out why your story sounds familiar, and it finally occurred to me that it reminds me of a friend’s experience being diagnosed with myasthenia gravis in her teens.  I did not meet this friend until she was 22 or so, and we are 50 now, so I may well remember some of the details wrong.  Is that something the doctors have considered?  IIRC, my friend’s MG onset was unusually rapid.  

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I don’t know. They seem to leap from possible cause to cause-from stroke to MS to now saying that it’s a “functional neurological disorder” (which seems to mean “we don’t know what’s wrong, so we’re going to send you to a psychologist and a physical therapist.) 

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