Page 1 of 3 123 LastLast
Results 1 to 10 of 29

Thread: MS question

  1. #1
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default MS question

    I know this is a bit off the Lupus topic but could anyone give me some information on MS? The doctors are now testing me for MS and that thought had never crossed my mind. I have looked at all the main sites about it and, sad to say, it fits me even more than the Lupus (which fit me to a T) but I would really like to hear a bit about your own experiences since the websites are so generic.

    If it helps I just had a high resolution MRI, a neuropsych exam and a 48 hour EEG as well as tons of new blood tests. I am awaiting the results (I actually have the disc with the MRI photos but I don't know which "white spots" are normal and which are not!).

    Thanks in advance for any information you could give me

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Hi Tgal,

    As you probably know, I was diagnosed with MS nearly two years ago. And, I have SLE as well. You would think that there would be a bunch of good MS websites out there, but there really aren't, none like We Have Lupus anyway. Maybe I'm just spoiled for being a part of WHL, but the MS sites I've visited have been very impersonal and the info rather vague. There are enough people close enough to where I live with MS, that we have a local face to face support group which I attend twice a month. MS is more prevalent than SLE, and you may have a support group in your area. There are usually a couple of people who show up who are being tested, and don't have a diagnosis yet, and we always try to welcome them and help them any way we can.

    My MS was discovered after I fell a few times. It was like someone flipped a switch, and my right leg would just go totally numb and limp, and down I'd go. I also started having serious nerve related pain in my extremities. SLE can cause CNS problems, but my CNS problems went far beyond anything ever documented as being caused by SLE. I saw a neuro, did a bunch of tests including the MRI, nerve conduction/evoked potentials tests, and they took some spinal fluid for testing. Then I got the diagnosis. It all happened rather quickly. I was pretty much devastated. How could I have two of the most notorious autoimmune disorders a person can have, and still live my life?

    I honestly figured it was game over for me. Then I started on meds to control the MS, and it didn't take me long to figure out that living with two autoimmune disorders wasn't really that different from living with one. One good thing about MS, is that there is a large variety of effective meds available to control it. If one doesn't work, or you don't like the side effects, you at least have other choices. MS is a progressive disease, and the progression can be alarmingly fast, so if, and it's still just a big if for you, if you have MS, it's best to know ASAP so you can get started on a proper treatment plan.

    My life with MS and SLE isn't that much different than my life was with just SLE. I wish I could help you with the MRI results, but I've never been able to tell the difference between white matter lesions indicative of MS, and just normal spots that are supposed to be there. When do you go back to discuss the results?

    Rob
    Last edited by rob; 08-25-2010 at 05:40 AM.

  3. The Following User Says Thank You to rob For This Useful Post:

    E42brchick (02-28-2012)

  4. #3
    Join Date
    Mar 2009
    Location
    Lebanon, Pa.
    Posts
    800
    Blog Entries
    4
    Thanks
    26
    Thanked 80 Times in 57 Posts

    Default

    I was also recently tested for ms because of the neurological and vision problems and a mri that showed that i had white specks on the brain. The neurologist said after everything i was experiencing mirgrains and put me on another med to contol this and it is helping. Good luck with your tests. Bonita

  5. #4
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    I've also recently gone through the MS testing. The MRI was negative, so the neuro did a spinal tap, and that came out negative too. He was SO sure that it was MS, and seemed miffed that he was wrong.
    I attended a Sjogrn's conference, and learned from an expert from John's Hopkins that Sjogren's can have neurological manifestations that look a lot like MS. My stupid neuro claimed that SJS is "only" dry eyes and dry mouth and is easily treatable - HAH. I won't be seeing him again.
    So, Look into CNS Lupus and Sjogren's Syndrome if the MS tests are all negative.
    Hugs,
    Marla

  6. The Following User Says Thank You to magistramarla For This Useful Post:

    tgal (08-25-2010)

  7. #5
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Well I picked up my MRI results today (because the nurse gave me all the other results then said of the MRI.. I am sorry, I can't give you this on the phone. The doctor will have to call you). Sadly, the doctor won't be in until Tues so I have no idea what all of this means.

    "Few Scattered deep/subcortical; white matter punctuate high FLAIR signal foci notes. Right cerebellar 5mm single punctate focus of high FLAIR signal. High resolution coronal FLAIR /T2 images show minimal focal prominence of the right temporal horn.

    Impression: Nonspecific few scattered deep/subcortical white matter hyperintensities with more promininent focus in the right cerebellum. These may reflect sequela from migraines, minimal chronic small vessel ischemic changes or gliosis related to demyelinating/inflammitory process".

    ummm.... ok.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  8. #6
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Quote Originally Posted by tgal View Post
    Well I picked up my MRI results today (because the nurse gave me all the other results then said of the MRI.. I am sorry, I can't give you this on the phone. The doctor will have to call you). Sadly, the doctor won't be in until Tues so I have no idea what all of this means.

    "Few Scattered deep/subcortical; white matter punctuate high FLAIR signal foci notes. Right cerebellar 5mm single punctate focus of high FLAIR signal. High resolution coronal FLAIR /T2 images show minimal focal prominence of the right temporal horn.

    Impression: Nonspecific few scattered deep/subcortical white matter hyperintensities with more promininent focus in the right cerebellum. These may reflect sequela from migraines, minimal chronic small vessel ischemic changes or gliosis related to demyelinating/inflammitory process".

    ummm.... ok.
    Geez, why don't they just page or call the Dr. on his cell so he can talk to you. Where is he that they cannot get ahold of him, the dark side of the moon? That's just aggravating.

  9. #7
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Quote Originally Posted by rob View Post
    Geez, why don't they just page or call the Dr. on his cell so he can talk to you. Where is he that they cannot get ahold of him, the dark side of the moon? That's just aggravating.
    I tried that, Rob! It took 4 days to get a nurse to even call me back and all I got was "EEG is fine. MRI is... oh, I can't tell you that there are too many technical terms on here. You will have to talk to the doctor and she will be here on Tues". I am not usually impatient (heck I waited almost a month for her to give me the EEG results) but this one is making me crazy! Just tell me already!!!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  10. #8
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Quote Originally Posted by tgal View Post

    Impression: Nonspecific few scattered deep/subcortical white matter hyperintensities with more promininent focus in the right cerebellum. These may reflect sequela from migraines, minimal chronic small vessel ischemic changes or gliosis related to demyelinating/inflammitory process".

    ummm.... ok.
    OK, the "Impression" part of this report is what they think may be the cause of what they are talking about in the first part of the report. I did some looking, and read one of my own MRI reports to try to translate some of this. I'll start with this-

    subcortical white matter hyperintensities

    "Hyperintensity" is not a medical term referring to the human anatomy, it's a technical MRI imaging term used to describe an area on an MRI image that shows a high level of "reflection" or brightness that shows up as white areas in the image. Kind of the same way the term "Solar Flare" would be used by an astronomer to indicate a "hotsot" on an image of the sun.

    Subcortical white matter, as it relates to MS, is the area where one expects to find abnormaities that could indicate possible MS.

    And this part is important in relation to MS-

    gliosis related to demyelinating/inflammatory process

    Gliosis is a neurological term that in layman terms means tiny points of damage to the central nervous system that show up in the form of scarring. That scarring can show up as hyperintensities on an MRI image

    "Demyelinating" refers to the sheath of insulation around nerves called Myelin. It means some of the Myelin has been damaged and/or has broken down. MS is an autoimmune disorder, and is also more specifically referred to as a demyelinating disease. The myelin is like the insulation on an electrical wire. If that insulation is worn away, two wires can cross, causing a short circuit. This short circuiting of nerves is what causes the symptoms of MS.

    Basically, the report is saying that they found areas in the white matter of the brain that could be indicative of a couple of different conditions or causes. Migraines being one, and a demyelinating/inflammatory process that could be MS as another. An MRI alone cannot be used to diagnose MS, so they are going to have to look at the results of all your other tests and come up with an overall impression of what's going on. I hope you can get some anwers soon, waiting really is the pits.

    Rob
    Last edited by rob; 08-27-2010 at 07:57 AM.

  11. The Following 2 Users Say Thank You to rob For This Useful Post:

    E42brchick (02-28-2012), tgal (09-01-2010)

  12. #9
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Quote Originally Posted by tgal View Post
    I tried that, Rob! It took 4 days to get a nurse to even call me back and all I got was "EEG is fine. MRI is... oh, I can't tell you that there are too many technical terms on here. You will have to talk to the doctor and she will be here on Tues". I am not usually impatient (heck I waited almost a month for her to give me the EEG results) but this one is making me crazy! Just tell me already!!!
    In 1969, President Nixon was able to make a telephone call from the oval office to Neil Armstrong and Buzz Aldrin on the moon, over 1/4 of a million miles away, but in 2010 we can't even reach our doctor at the golf course. Grrrr!

  13. The Following User Says Thank You to rob For This Useful Post:

    tgal (08-27-2010)

  14. #10
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    LOL I needed that!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •