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tgal
08-24-2010, 07:26 PM
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

rob
08-25-2010, 05:36 AM
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

Bonita
08-25-2010, 09:25 AM
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

magistramarla
08-25-2010, 08:44 PM
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

tgal
08-26-2010, 07:22 PM
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.

rob
08-27-2010, 06:34 AM
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.

tgal
08-27-2010, 07:10 AM
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!!!

rob
08-27-2010, 07:41 AM
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

rob
08-27-2010, 08:04 AM
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!

tgal
08-27-2010, 09:18 AM
LOL I needed that!

rob
08-27-2010, 09:46 AM
Tgal

You know, between now, and when you do see the neuro/Dr. for the results, I wouldn't worry. You already suspect that you may have MS. The MRI results, in my opinion, only indicate what you already suspect, that you might have MS. This could bring you one step closer to a proper diagnosis, and that means you can start a proper treatment plan and get on with living and enjoying your life. This is a good thing. There are a bunch of very bad things that they could have discovered in this MRI, irreversible untreatable things, but they didn't find any such thing at all. If it's MS, you can handle it. Look at me. I have MS and SLE, and tomorrow I'll be out in the middle of the ocean chasing (and hopefully photographing) some whales, and maybe a seal or two.

If I can handle all this autoimmune stuff, so can you, so try not to worry between now and your next appointment.

Rob

BTW-It's good to finally see you in your avatar!

magistramarla
08-27-2010, 10:16 AM
You go, Rob!! Great advice!
Have fun whale-watching. I sure enjoyed it. Our capt. got us into the middle of a dozen of them - blue whales and humpbacks.
We were also accompanied back to the wharf by a huge pod of playful dolphins. They were playing in the wake.
Jeff managed to film a whale slapping his tail fins on the water - awesome!
Hugs,
Marla

tgal
08-27-2010, 10:43 AM
Thanks Rob!

I have been saying for months that I can handle whatever it is I just want to KNOW. At least I am closer to that. Out in the ocean? OMG what I would give to be able to get in the sun again! I can't handle the sun or the heat right now and if a diagnosis of MS means they can help me get it under control so I can have some kind of life again it would be worth it.

Enjoy the ocean, whales and seals! I will be thinking of you and wishing it were me!

magistramarla
08-27-2010, 10:54 AM
Tgal,
It was quite cold when we were out on the bay. I wore a hooded sweatshirt and my dorky SPF 30 sun hat - look at my pics in the photo album, 2 wks with a grandson.
It was wonderful fun! Try it if you can - just take precautions.
Oh, I just saw that you are in Houston - no wonder you are worried about heat and sun. I used to live in San Antonio, and I couldn't stand to get out of the air-conditioned house.
Rob and I both live on Northern coasts, and it really makes a difference.
Hugs,
Marla

tgal
08-27-2010, 11:03 AM
Marla you are simply a doll! Your posts always make me smile. Thank you for that! As for Houston, when/if the time comes that I can financially afford to move again I will be going where it is cold. Although the cold bothers me sun it is not near as bad as the heat! You are right, I seldom get out of the house now and, of course, today my A/C went out! When it rains it pours!

rob
08-27-2010, 11:04 AM
Tgal,

Oh, I have to be very careful about sun exposure, especially on the water. I'll be under the canopy piloting while Karen and Dad handle the sail. If we spot some whales, one of them will take over for me while I go out on the bowsprit to get some good photos. Then, it's back under cover for me! I also wear waterproof high SPF sunblock, and my boonie hat, yet I still manage to get just enough sun to mess with my system a bit, but some things are worth it.

Marla,

The predominant species in this part of the North Atlantic is the Blue Whale. They are awesome creatures. We also see various sharks, and even a Great White once in a while. There are always a ton of harbor seals, and many of the islands have Eagle nests that are easy to see and photograph. Pretty much the entire area here is either National Park land, a State Park, or a protected wildlife refuge, so the opportunity to see wildlife and pristine wilderness is available in any direction. It's one of the primary reasons I live where I do.

Rob

tgal
08-31-2010, 05:08 PM
Well, as you all know it is Tues. This is the day that the doctor was going to call me with the results of my tests. Guess what? No call came. I even called the office twice and was told the 2nd time that she would call after 4PM. When I checked back at 5 they were gone for the day. Needless to say I am beyond ticked off. Tomorrow I am going to call and raise heck with them but tonight I am simply mad. I know it is only another day but I have waited and waited for someone to find out what is wrong with me and I am really upset that no one understands how important this is to me.

Anyway... I am off for awhile because I am not good company tonight. Hugs to all of you

rob
09-01-2010, 06:07 AM
Any communication at all with your Dr? So nice of them to not call you, what a bunch of BS.

debbie-b
09-01-2010, 06:36 AM
Any communication at all with your Dr? So nice of them to not call you, what a bunch of BS.

That's because, they are not walking in her shoes, if they were, they would know, how anxious she is, to find out.
What ever happened to doctors with compassion?

Debbie

magistramarla
09-01-2010, 09:54 AM
What is life-shattering news for us is just another patient's lab report for them. It makes me so mad when a doc is so uncaring. The doc was the one who said you would be called on Tuesday. Why can't he/she keep their own word?
Gentle Hugs to you Tgal,
Marla

tgal
09-01-2010, 10:07 AM
Well, I got the call today and I found out... NOTHING! The answer was "we still are not sure. Your neuropsych shows that there are memory issues I think I want to send you to someone that handles cognitive neurology". My reply was " OK, but dementia wouldn't explain all of the other symptoms but MS would". Her reply was "oh, do you want us to look into MS". OMG shoot me now!. I replied "well, considering that all the other doctors were thinking Lupus and the MRI techs mentioned demylenating process, I think that should be the next step especially since dementia could only explain the memory loss and not the loss of motor skills mentioned on the report". To which she said " Ok, I will give you a referral to one of those doctors."

OMG can someone please get me off this roller coaster???????????

Bonita
09-01-2010, 01:15 PM
So sorry for all the problems you are having with your doctors. Well duh we should not be the ones to answer our own problems that is why we go to specialists. Hope you soon get and answer. Bonita

rob
09-01-2010, 02:42 PM
Well, I got the call today and I found out... NOTHING! The answer was "we still are not sure. Your neuropsych shows that there are memory issues I think I want to send you to someone that handles cognitive neurology". My reply was " OK, but dementia wouldn't explain all of the other symptoms but MS would". Her reply was "oh, do you want us to look into MS". OMG shoot me now!. I replied "well, considering that all the other doctors were thinking Lupus and the MRI techs mentioned demylenating process, I think that should be the next step especially since dementia could only explain the memory loss and not the loss of motor skills mentioned on the report". To which she said " Ok, I will give you a referral to one of those doctors."

OMG can someone please get me off this roller coaster???????????

Given the current situation, I would like to dedicate this song, to Tgal's wonderful Doctor (slightly NSFW).

This one's for you Doc!

Click the link- www.youtube.com/watch?v=3i6OrOZwtmA (http://www.youtube.com/watch?v=3i6OrOZwtmA)

Enjoy.

Bonita
09-01-2010, 02:48 PM
Rob you are funny and that sums up the way her doctor treated her. Bonita

red246
09-01-2010, 02:50 PM
ROFL Oh my goodness! Thank you Rob for making me laugh today - I needed it!

Tgal - Sweetie, sending you (((HUGS)))!

tgal
09-01-2010, 03:19 PM
Given the current situation, I would like to dedicate this song, to Tgal's wonderful Doctor (slightly NSFW).

This one's for you Doc!

Click the link- www.youtube.com/watch?v=3i6OrOZwtmA (http://www.youtube.com/watch?v=3i6OrOZwtmA)

Enjoy.

OMG Rob I laughed til I cried! I love Buffet (cheeseburger anyone?) and I didn't know this one! Thank you and this is going on facebook!\

One more thing... I did get a call from the MS Neuro and I have an appointment next Wednesday. Let's try this again!

debbie-b
09-02-2010, 04:41 AM
Leave it up to Rob, to make everybody laugh.
Thanks for that Rob, especially on the rough, rough day I have today.( maaaajor flare today).
@ tgal hopefully you can get an answer soon.



Debbie

rob
09-02-2010, 06:10 AM
I did get a call from the MS Neuro and I have an appointment next Wednesday. Let's try this again!

That's good, just keep on pushing forward. The answers will come. Stay focused, and don't let 'em get you down.

magistramarla
09-02-2010, 10:46 AM
The doc that you saw was a neuro, right? I would have thought that MS would have been the first thing that he/she would have been wanting to rule out. The neuro that I went to seemed determined to prove that MS was what I have, and when he wasn't able to prove that, he just dropped me. Now you're being sent to yet another doc to prove or disprove it? Wow, they all want to make a few bucks, don't they?
I'm a bit cynical about docs (and dentists) lately. I sure hope that this one is actually able to tell you something. Keep us posted.
Hugs,
Marla