Aa
Introduction
Hi all- I’ve been lurking around here for a while and finally thought I’d introduce myself. This seems like such a wonderful supportive community- it’s been so great to follow it and read through the posts and people’s comments.
My name is Kathe and I am married and we have two amazing kids (doesn’t everyone? Have amazing kids that is- not necessarily two). :^)
After Christmas last year I was told I had MS. A month prior I had an episode where my typing ability went down the tubes. I was making lots and lots of mistakes- much more than normal and different types of mistakes as well.
Also when I sat down to sew (and I’ve been sewing off and on for 25 years) I couldn’t remember which way the fabric was supposed to go through the machine .Was it supposed to go away from me or towards me? I sat there for a while and realized I wasn’t going to figure it out.
Later I was writing a grocery list or something- and when I looked back over it I had left out some letters in some of the words and hadn’t even realized it as I was writing. Well that scared the crap out of me so I asked my doctor about it and she said it didn’t seem like I had a stroke and ordered an MRI.
When the MRI results came in I got a copy and immediately googled everything. My doctor referred me to a neuro and he took a look and the images and seemed to think it was MS right away although he didn’t tell us until the second or third visit. So I gave a lot of blood and then had a horrible lp (second one in my life and two too many).
The blood test ruled everything else out and the lp was positive (compared to the serum) for bands (>5) and also positive for the IgG Index. From what I’ve read it seems that the IgG test might have been negative if I had it done somewhere else since everyone seems to have a different scale. My result was 0.71 and the scale was 0.66 as the cut off for normal but I‘ve seen cut-offs higher than that- so maybe it is a borderline result.
We asked this neuro about my symptoms and to everything single thing we mentioned as a symptom his reply was “well that doesn’t sound like MS”. I started to feel stupid after a while and just decided not to ask him anymore.
We went for a second opinion at a MS clinic. We choose it because there were several women neuro’s there and I am much more comfortable talking to women doctors than men. I had prepared all my stuff and my history and a list of symptoms (there were more symptoms by this time) and I was looking forward to this visit.
Imagine my (and my husband’s) surprise when in walks this young man in his residency who proceeded to tell me that he was going to be doing my exam. I was surprised and disappointed and to top it off he had an unfortunate smile that looked a lot more like a smirk than a smile.
I felt foolish not realizing that this was a teaching hospital so of course I would see students but I had thought that even with students the neuro I had made the appointment with would have been there for the duration. She popped in afterwards and did a quick review of what the boy dr. had done.
They both said my MRI results were “consistent with MS” and gave me all the same info about meds that the last neuro had given me.
A little more history:
When I was 12 or 13 (I’m 43 now) I was dx’d with Guillian Barre Syndrome. I must have been feeling tired and weak and told my mom about it and she told me to squeeze her fingers but she said nothing happened when I did. I felt like I was squeezing as hard as I could and she said there was barely any pressure.
I was in the hospital for a week. Had my first lp (horrible thing) and a round of shocks on my legs that were also horrible. Other than those two horrible tests (did I mention they were horrible?) my stay was actually pretty relaxing. I didn’t feel “sick”- just tired. Some friends stopped by to keep me company and other than being woken up to take a breathing test it was all just resting and watching t.v.
My mom says the dr. was very proud of his diagnosis of GBS because they really had no idea what was going on.
A few years later- when I was in high school- I began having this heavy feeling in both my arms. And a lot of fatigue. At the time I remember thinking that it wasn’t regular tiredness and I looked up a bunch of words to describe it- lassitude, lethargy… My arms felt so heavy- as if weights had been tied to them.
I don’t think I mentioned it to my mom or if I did I didn’t explain it very well because it wasn’t ever something that was checked out. Also if I tried to blow dry my hair my arms got really tired while doing that so I just gave up and never really learned how to blow dry my hair (which explains why my hair looks like it does…).
My general feeling around this time was that something was wrong but my assumption was that I was doing something wrong and if I could just do it correctly then I wouldn’t be so tired.
Anyway one of the things the boy dr. said that was that my original symptoms of weakness just in my arms didn’t “present” like either MS or GSB. MS would have to be more asymmetrical and the GSB would have shown weakness in the legs as well or in the legs first. I never had any leg weakness (other than just a general weakness all over) with the GSB- it was definitely my arms. The boy dr. actually sounded kind of desperate trying to find something about me that was asymmetrical and I was able to tell him that I have tinnitus that is more to my right side than my left (since I was a teenager).
So here are some symptoms I’ve had since I was a teenager: fatigue, heat- intolerance, attention problems and cognitive problems, depression. I’ve often wondered if I had some type of ADD as well as dyslexia because of issues I’ve had. But since December I’ve had issues with reading that have been very familiar to me (“Oh I remember this feeling”) and now I think they may have been MS issues.
Since December these are also some new issues I’ve been having: intention tremors, an internal feeling of trembling- as if I’ve had too much caffeine, stopping in the middle of a sentence or word while talking and not being able to get back to my sentence, my brain has been working very slowly at time- when I’ve gone to get something out of the cupboard it is almost like I can feel the gears chunking along and there is always that possibility that my eye will catch something and then my brain will latch onto it and forget its original purpose. (“Ah flour? Why yes flour that is what I need, no no I’m making a bowl of something, to eat, what is it?)
My fatigue also increased. I felt some slight balance issues; I started to feel exactly like I had had some wine without having the wine- not just with balance but the actual physical feeling of the wine affecting my body and then that looseness and weak feeling that I associate with it.
Another issue I’ve had is constipation. Well both issues really- it always felt (since I was a teenager) that either nothing was happening or it was all happening too quickly- if you know what I mean. And I’ve realized how much of my time has been spent thinking about bathrooms and what I should eat (not that I’ve listened to myself too much on that respect) so that everything works like it should. I don’t think I’ve ever met the clinical definition of constipation but still…
I was also diagnosed with autoimmune thyroid disorder- which I think is called hashimotos. I love my thyroid medicine! It actually helped with my mood and my digestion. Although the constipation did come back for a month or so since December.
I'm going to have to put the rest of my intro in a comment because the computer is telling my I've exceeded my limit.
My name is Kathe and I am married and we have two amazing kids (doesn’t everyone? Have amazing kids that is- not necessarily two). :^)
After Christmas last year I was told I had MS. A month prior I had an episode where my typing ability went down the tubes. I was making lots and lots of mistakes- much more than normal and different types of mistakes as well.
Also when I sat down to sew (and I’ve been sewing off and on for 25 years) I couldn’t remember which way the fabric was supposed to go through the machine .Was it supposed to go away from me or towards me? I sat there for a while and realized I wasn’t going to figure it out.
Later I was writing a grocery list or something- and when I looked back over it I had left out some letters in some of the words and hadn’t even realized it as I was writing. Well that scared the crap out of me so I asked my doctor about it and she said it didn’t seem like I had a stroke and ordered an MRI.
When the MRI results came in I got a copy and immediately googled everything. My doctor referred me to a neuro and he took a look and the images and seemed to think it was MS right away although he didn’t tell us until the second or third visit. So I gave a lot of blood and then had a horrible lp (second one in my life and two too many).
The blood test ruled everything else out and the lp was positive (compared to the serum) for bands (>5) and also positive for the IgG Index. From what I’ve read it seems that the IgG test might have been negative if I had it done somewhere else since everyone seems to have a different scale. My result was 0.71 and the scale was 0.66 as the cut off for normal but I‘ve seen cut-offs higher than that- so maybe it is a borderline result.
We asked this neuro about my symptoms and to everything single thing we mentioned as a symptom his reply was “well that doesn’t sound like MS”. I started to feel stupid after a while and just decided not to ask him anymore.
We went for a second opinion at a MS clinic. We choose it because there were several women neuro’s there and I am much more comfortable talking to women doctors than men. I had prepared all my stuff and my history and a list of symptoms (there were more symptoms by this time) and I was looking forward to this visit.
Imagine my (and my husband’s) surprise when in walks this young man in his residency who proceeded to tell me that he was going to be doing my exam. I was surprised and disappointed and to top it off he had an unfortunate smile that looked a lot more like a smirk than a smile.
I felt foolish not realizing that this was a teaching hospital so of course I would see students but I had thought that even with students the neuro I had made the appointment with would have been there for the duration. She popped in afterwards and did a quick review of what the boy dr. had done.
They both said my MRI results were “consistent with MS” and gave me all the same info about meds that the last neuro had given me.
A little more history:
When I was 12 or 13 (I’m 43 now) I was dx’d with Guillian Barre Syndrome. I must have been feeling tired and weak and told my mom about it and she told me to squeeze her fingers but she said nothing happened when I did. I felt like I was squeezing as hard as I could and she said there was barely any pressure.
I was in the hospital for a week. Had my first lp (horrible thing) and a round of shocks on my legs that were also horrible. Other than those two horrible tests (did I mention they were horrible?) my stay was actually pretty relaxing. I didn’t feel “sick”- just tired. Some friends stopped by to keep me company and other than being woken up to take a breathing test it was all just resting and watching t.v.
My mom says the dr. was very proud of his diagnosis of GBS because they really had no idea what was going on.
A few years later- when I was in high school- I began having this heavy feeling in both my arms. And a lot of fatigue. At the time I remember thinking that it wasn’t regular tiredness and I looked up a bunch of words to describe it- lassitude, lethargy… My arms felt so heavy- as if weights had been tied to them.
I don’t think I mentioned it to my mom or if I did I didn’t explain it very well because it wasn’t ever something that was checked out. Also if I tried to blow dry my hair my arms got really tired while doing that so I just gave up and never really learned how to blow dry my hair (which explains why my hair looks like it does…).
My general feeling around this time was that something was wrong but my assumption was that I was doing something wrong and if I could just do it correctly then I wouldn’t be so tired.
Anyway one of the things the boy dr. said that was that my original symptoms of weakness just in my arms didn’t “present” like either MS or GSB. MS would have to be more asymmetrical and the GSB would have shown weakness in the legs as well or in the legs first. I never had any leg weakness (other than just a general weakness all over) with the GSB- it was definitely my arms. The boy dr. actually sounded kind of desperate trying to find something about me that was asymmetrical and I was able to tell him that I have tinnitus that is more to my right side than my left (since I was a teenager).
So here are some symptoms I’ve had since I was a teenager: fatigue, heat- intolerance, attention problems and cognitive problems, depression. I’ve often wondered if I had some type of ADD as well as dyslexia because of issues I’ve had. But since December I’ve had issues with reading that have been very familiar to me (“Oh I remember this feeling”) and now I think they may have been MS issues.
Since December these are also some new issues I’ve been having: intention tremors, an internal feeling of trembling- as if I’ve had too much caffeine, stopping in the middle of a sentence or word while talking and not being able to get back to my sentence, my brain has been working very slowly at time- when I’ve gone to get something out of the cupboard it is almost like I can feel the gears chunking along and there is always that possibility that my eye will catch something and then my brain will latch onto it and forget its original purpose. (“Ah flour? Why yes flour that is what I need, no no I’m making a bowl of something, to eat, what is it?)
My fatigue also increased. I felt some slight balance issues; I started to feel exactly like I had had some wine without having the wine- not just with balance but the actual physical feeling of the wine affecting my body and then that looseness and weak feeling that I associate with it.
Another issue I’ve had is constipation. Well both issues really- it always felt (since I was a teenager) that either nothing was happening or it was all happening too quickly- if you know what I mean. And I’ve realized how much of my time has been spent thinking about bathrooms and what I should eat (not that I’ve listened to myself too much on that respect) so that everything works like it should. I don’t think I’ve ever met the clinical definition of constipation but still…
I was also diagnosed with autoimmune thyroid disorder- which I think is called hashimotos. I love my thyroid medicine! It actually helped with my mood and my digestion. Although the constipation did come back for a month or so since December.
I'm going to have to put the rest of my intro in a comment because the computer is telling my I've exceeded my limit.
Jen- Thanks for writing it is always great to get a reply!
You are very right about wanting to find a doctor I feel comfortable with. The first neuro was very quick with a diagnosis and I'm thankful for that but the way he kept saying "that doesn't sound like MS" when I asked him about symptoms made me feel as if he had a certain amount of knowledge but not a ton.
Our insurance will be changing and in fact the neuro that I made the second appointment with- the one I really wanted to see- said it would be better to wait and get on our new insurance before I start any meds. We're a little bit in limbo with our move but it'll be all for the better.
I think when I was asking about if the neuro was right when he said I had a "moderate" amount of lesions I really wanted to know if HE was right because he just seemed to be so out of his element in talking about symptoms that I wasn't sure if he knew what he was talking about. From what I've read it really is all about location- you are so right about that.
Thanks again for your reply!
Kathe
You are very right about wanting to find a doctor I feel comfortable with. The first neuro was very quick with a diagnosis and I'm thankful for that but the way he kept saying "that doesn't sound like MS" when I asked him about symptoms made me feel as if he had a certain amount of knowledge but not a ton.
Our insurance will be changing and in fact the neuro that I made the second appointment with- the one I really wanted to see- said it would be better to wait and get on our new insurance before I start any meds. We're a little bit in limbo with our move but it'll be all for the better.
I think when I was asking about if the neuro was right when he said I had a "moderate" amount of lesions I really wanted to know if HE was right because he just seemed to be so out of his element in talking about symptoms that I wasn't sure if he knew what he was talking about. From what I've read it really is all about location- you are so right about that.
Thanks again for your reply!
Kathe
Kathe -
Welcome out of the shadows!!! No post is ever too long :) Look up my intro posts, they were novels too!! You've got a lot to tell and share, so type away!!!
I think the biggest missing piece of your puzzle is a really solid doctor that you are comfortable and happy with. For me, that was really the key... I jokingly call my first neurologist Dr. Weenie (that's being nice....). But, I found another neuro that I absolutely adore, she is wonderful, listens, is open minded and actualy a really nice person that is easy to talk to.
Relocating and such is not a reason not to start a med! Your meds will be delivered to you, and if your insurance won't be changing, get the process started, it takes long enough as is!! I am a big believer in combining the meds along with alternative therapies like yoga, supplements, diet modifications, massage therapy, and was just talked into finally trying accupuncture.
I don't think any doctor can look at your MRIs and say you've had MS x-number of years.... but sitting down and going over your history and what happened when, when certain symptoms started and such, I do believe the doctors can put a general age to the disease. For me, fairly solid MS related symptoms / issues were present for 5 years.... but I was a single mom with a teenager, horses and a busy career, so there just was never time to be sick. I had not been to a primary doctor in over 4 years, always had the suck it up and walk it off attitude... if i was not running a fever or physically ill, would still go on with the day...
After my own round of babbling... the biggest thing in my opinion is finding a doctor you are happy with, makes all the difference and is such a foundation that is absolutely essential for you to get a solid plan for managing what you have going on!
More babble... quick comment about number of lesions vs symptoms.... I don't believe its so important how how many, but the real key is the where... I do not have many lesions, but all my lesions are in the cervical spine area and lucky me, there is one that sits in just the right (or wrong) spot and that single lesion is the sole source of my daily issue of dealing with peripheral neuropathy in my left arm and hand. Guess when it comes to lesions, its much like real estate... location, location, location!!!
Again, welcome out of the shadows and look forward to hearing more about the great kids :) Share away about everything, good and bad!!
Hugs,
Jen
JJ- Thanks for another reply!
I guess heat intolerance for me means when it is hot I have fatigue- physical heaviness in my arms and weakness. Also from a few months ago I think my tremors are also worse in the heat. And then when it is cool those things are gone.
I think you're right about the issues from when I was a teen- I'm probably looking for answers that are not answerable and the best thing to do might be to to let go of that and concentrate on the here and now. :^) I think I'll probably always wonder what it was but really without any tests or anything there is no way anyone could tell.
Thanks for your ps note- I"ll keep repeating that to myself!
Thanks again,
Kathe
I guess heat intolerance for me means when it is hot I have fatigue- physical heaviness in my arms and weakness. Also from a few months ago I think my tremors are also worse in the heat. And then when it is cool those things are gone.
I think you're right about the issues from when I was a teen- I'm probably looking for answers that are not answerable and the best thing to do might be to to let go of that and concentrate on the here and now. :^) I think I'll probably always wonder what it was but really without any tests or anything there is no way anyone could tell.
Thanks for your ps note- I"ll keep repeating that to myself!
Thanks again,
Kathe
Sidesteps- Thanks so much for your reply. You've given me a lot to think about.
I feel very fortunate that my diagnosis went so quickly from the time that I had my first MRI. I know from reading on a lot of forums that is not true for so many people.
I don't think I have any issue with seeing a resident- it was just that I had spent some time looking up the neuro I had made the appointment with and was really looking forward to seeing her. It was very disappointing to only see her for a few minutes and but now I think I know what to expect at a teaching hospital and I'll be better prepared. The dr. I spoke to was very thorough and make some great observations.
Also the first neuro I saw was just confusing for me- since he was very quick to make the diagnosis but then with any symptoms we asked about he just said
"that doesn't sound like MS" but nothing else. No elaboration or anything. So that confused me more than anything.
Thanks again for all your help, I really appreciate your answer.
Kathe
ps. GamingMama is my xbox gamer tag. I love to play FPS and RPGs. Right now we don't have any of our stuff but I do have my DS and I can play
Ace Attorney and a couple mystery type games. Oh we (my two kids and my husband and my nephew) like to play D&D.
I feel very fortunate that my diagnosis went so quickly from the time that I had my first MRI. I know from reading on a lot of forums that is not true for so many people.
I don't think I have any issue with seeing a resident- it was just that I had spent some time looking up the neuro I had made the appointment with and was really looking forward to seeing her. It was very disappointing to only see her for a few minutes and but now I think I know what to expect at a teaching hospital and I'll be better prepared. The dr. I spoke to was very thorough and make some great observations.
Also the first neuro I saw was just confusing for me- since he was very quick to make the diagnosis but then with any symptoms we asked about he just said
"that doesn't sound like MS" but nothing else. No elaboration or anything. So that confused me more than anything.
Thanks again for all your help, I really appreciate your answer.
Kathe
ps. GamingMama is my xbox gamer tag. I love to play FPS and RPGs. Right now we don't have any of our stuff but I do have my DS and I can play
Ace Attorney and a couple mystery type games. Oh we (my two kids and my husband and my nephew) like to play D&D.
COMMUNITY LEADER
Hey Kathe,
If you really feel the need to work it out, (imho) i'd not be looking all the way back to childhood because its incredibly rare, and the periods of illnesses are just more likely to be as dx than something rare. I wouldn't even look back at your teens, "since I was a teenager: fatigue, heat- intolerance, attention problems and cognitive problems, depression......constipation" apart from 'heat-intollerance' everything you mention can basically all fit in with thyroid issues or GBS, its just 'more likely' than MS even though MS is possible.
You dont actually mention any 'odd' episodes in your 20's or 30's and this is probably the most common age groups, so i think you might need to think back from now to those times. Remember though, with a dx of thyroid its going to be really difficult to seperate a lot of your sx's. You'll need to look at sx's (if you have any) that are highly suggestive of MS eg Optic Neuritis and in no way a sx of anything else. If not i'm sorry but i'm not sure you will ever be able to work it out because you are a bit complicated due to the duel dx's.
As for 'heat intollerance' its one of those weird sx's of MS and just like 'fatigue' but they quite commonly get used by the general public (none MSers) and over time they both have become converluted with over use. In MS a rise in temp, either internal or external may temperarily bring on, a worsening or increase of their MS sx's, MS actually use to be dx by putting the person in a hot bath.
The most obvious and startling heat intollerance is 'Uhthoff's' which is when vision worsens, it can become blurred or a return of ON etc when they get overheated, visual is the only one that gets a special name for it. Tremors and fatigue are probably the next most common sx, with cog fog etc closely following. Fatigue is an interesting and frustrating sx because of how common it is in other conditions but with fatigue in MS heat intollerance, their fatigue can be much more than being really really tierd or lethargic.
Not sure how to clearly explain the weakness part of fatigue lol, eg lets say an MSer has ON and right side issues and they get really overheated. This person might experience a decline in their vision or a return of ON. whilst they are unable to get their right leg to move because it feels like its got a ten tonne weight hanging off it. Once they cool down and rest up, these sx go away completely or at least back to their normal. lol hopefully that made sense in explaining what MS heat intollerance is about. :o)
Cheers.........JJ
PS YOU didn't do anything to cause anything, YOU did nothing wrong!!!!
If you really feel the need to work it out, (imho) i'd not be looking all the way back to childhood because its incredibly rare, and the periods of illnesses are just more likely to be as dx than something rare. I wouldn't even look back at your teens, "since I was a teenager: fatigue, heat- intolerance, attention problems and cognitive problems, depression......constipation" apart from 'heat-intollerance' everything you mention can basically all fit in with thyroid issues or GBS, its just 'more likely' than MS even though MS is possible.
You dont actually mention any 'odd' episodes in your 20's or 30's and this is probably the most common age groups, so i think you might need to think back from now to those times. Remember though, with a dx of thyroid its going to be really difficult to seperate a lot of your sx's. You'll need to look at sx's (if you have any) that are highly suggestive of MS eg Optic Neuritis and in no way a sx of anything else. If not i'm sorry but i'm not sure you will ever be able to work it out because you are a bit complicated due to the duel dx's.
As for 'heat intollerance' its one of those weird sx's of MS and just like 'fatigue' but they quite commonly get used by the general public (none MSers) and over time they both have become converluted with over use. In MS a rise in temp, either internal or external may temperarily bring on, a worsening or increase of their MS sx's, MS actually use to be dx by putting the person in a hot bath.
The most obvious and startling heat intollerance is 'Uhthoff's' which is when vision worsens, it can become blurred or a return of ON etc when they get overheated, visual is the only one that gets a special name for it. Tremors and fatigue are probably the next most common sx, with cog fog etc closely following. Fatigue is an interesting and frustrating sx because of how common it is in other conditions but with fatigue in MS heat intollerance, their fatigue can be much more than being really really tierd or lethargic.
Not sure how to clearly explain the weakness part of fatigue lol, eg lets say an MSer has ON and right side issues and they get really overheated. This person might experience a decline in their vision or a return of ON. whilst they are unable to get their right leg to move because it feels like its got a ten tonne weight hanging off it. Once they cool down and rest up, these sx go away completely or at least back to their normal. lol hopefully that made sense in explaining what MS heat intollerance is about. :o)
Cheers.........JJ
PS YOU didn't do anything to cause anything, YOU did nothing wrong!!!!
What sort of games do you play GamingMama? :)
Kathe, Welcome to the forum. I read your post this morning and wanted to reply but couldn't until now.
A couple things that stand out in your post. Your teen illnesses sound similar to symptoms of Mono and EBV (Ebstein Bar Virus). Some of your symptoms earlier sound like they could also be thyroid issues - extremity issues (hands) and your constipation. Hashimoto's is a frequent offender of some MS mimics.
Your recent symptoms "tremor's, cognitive dysfuntion, internal vibrations, typing error's, missing words, balance and coordination issues, etc." All are symptoms I had. I had many other's and had an uncommon multi-focal attack. (It means it hit many areas at once withing a short period of time.)
I went to a teaching hospital and was seen by a very good Resident. In fact, I felt she was more thorough and better explaining her thoughts/concerns than many MS Specialists I saw. She had pointed out my right foot drop and numbness in my left leg.
I think they tend to give you a little more feedback and are much more thorough because they are being extra cautious; so (despite his age) it sounds like he was thorough and well thought.
The rumor is that for each attack there are 4 to 5 lesions formed. It would appear that your lesion load do not quite match 25 years; so I would suspect that there were different factor's at play in your teen yours.
You sort of sound like you are in discovery and denial still (which is OK). For some people, it can take some time to absorb the information and make sense of it but your tests and exams seem to indicate MS.
I am not sure it really matters how long you have had it or really how much damage you have. I tried really hard not to get myself worked up while I was in limboland (not dx's or treated) by saying this is a slow moving disease but the truth is... if I had been diagnosed and treated from my worst attack in 2010 I might have a lot less damage.
I think the important part is doing your best to prevent more damage (DMDs) and learn how to manage this and take care of yourself.
((((Hugs))))
Kathe, Welcome to the forum. I read your post this morning and wanted to reply but couldn't until now.
A couple things that stand out in your post. Your teen illnesses sound similar to symptoms of Mono and EBV (Ebstein Bar Virus). Some of your symptoms earlier sound like they could also be thyroid issues - extremity issues (hands) and your constipation. Hashimoto's is a frequent offender of some MS mimics.
Your recent symptoms "tremor's, cognitive dysfuntion, internal vibrations, typing error's, missing words, balance and coordination issues, etc." All are symptoms I had. I had many other's and had an uncommon multi-focal attack. (It means it hit many areas at once withing a short period of time.)
I went to a teaching hospital and was seen by a very good Resident. In fact, I felt she was more thorough and better explaining her thoughts/concerns than many MS Specialists I saw. She had pointed out my right foot drop and numbness in my left leg.
I think they tend to give you a little more feedback and are much more thorough because they are being extra cautious; so (despite his age) it sounds like he was thorough and well thought.
The rumor is that for each attack there are 4 to 5 lesions formed. It would appear that your lesion load do not quite match 25 years; so I would suspect that there were different factor's at play in your teen yours.
You sort of sound like you are in discovery and denial still (which is OK). For some people, it can take some time to absorb the information and make sense of it but your tests and exams seem to indicate MS.
I am not sure it really matters how long you have had it or really how much damage you have. I tried really hard not to get myself worked up while I was in limboland (not dx's or treated) by saying this is a slow moving disease but the truth is... if I had been diagnosed and treated from my worst attack in 2010 I might have a lot less damage.
I think the important part is doing your best to prevent more damage (DMDs) and learn how to manage this and take care of yourself.
((((Hugs))))
Thank you JJ-
I think the whole time issue is really just about how I feel about myself. Looking back I think a lot of things that may have been MS were things that I felt bad about- fatigue and cognitive issues- feeling like I had been doing something wrong to cause those thing. So to know that there was a reason for those things then it makes me feel much better.
Again I'm really looking forward to another meeting with a neuro to go over the images and ask all the questions.
Your answers help and it is great to hear from people who have more experience with this than I do.
Kathe
I think the whole time issue is really just about how I feel about myself. Looking back I think a lot of things that may have been MS were things that I felt bad about- fatigue and cognitive issues- feeling like I had been doing something wrong to cause those thing. So to know that there was a reason for those things then it makes me feel much better.
Again I'm really looking forward to another meeting with a neuro to go over the images and ask all the questions.
Your answers help and it is great to hear from people who have more experience with this than I do.
Kathe
Thank you Lulu,
I am really looking forward to talking to a neuro about my images again and asking about the atrophy and stuff. When I say my images that was the first time I had ever seen an MRI so really it has been a huge learning experience.
Kathe
I am really looking forward to talking to a neuro about my images again and asking about the atrophy and stuff. When I say my images that was the first time I had ever seen an MRI so really it has been a huge learning experience.
Kathe
COMMUNITY LEADER
Hi and welcome to our little MS community, you might find reading through the health pages, (found just to the right of your screen) they will answer many of your questions, and some you probably haven't thought of yet. Please read the ones on DMD's! :o)
My brain is having a moment, lol feels like i've just read through an ikea instruction booklet and i'm still trying to work it out, wow i so loved your humour infused intro! um whilst i'm waiting for my brain to get back online so i can try to answer your Q's, i'll mention whats stuck in my head.
I wouldn't of actually classed the neuro's you've seen as not being any good, both dx you and want you on a DMD so i wouldn't be tossing either of them. The other thing going around in my pea brain, is that i've sort of got the impression, that you feel/think when you got MS is of some vital important.
The length of time you've had MS is not that important in the grand scheme of things, its also subjective so may not be something you can, with accuracy determine. Whats more important is your now, your level of disability, its pattern etc. there is more meaning in your most recent history, than what can (possibly) be made from your childhood.
Ok on to your Q's "Neither neuro mentioned atrophy and after reading about it I googled “normal brain images” and compared them to mine....Why would the neuros not have mentioned this? The simple answer is that maybe there just isn't any, your assuming there is and they didn't tell you. When its more likely that your untrained eye is measuring incorrectly.
"I had around twenty or so spots he said this was a “moderate amount”. Was he correct?" Basically yes, because for that number of lesions, it would of been an under-statement if he'd said minor amount and an over-statement if he's said excessive amount.
"...my symptoms have been very mild the first neuro said my prognosis is very good and the past should indicate what the future will be like. Was he correct?" This isn't really answerable, no one can make that determination with any measure of accuracy because of the unpredicable nature of MS. It only takes one lesion in the right place for everything to change, so really the only answer can be maybe.
Cheers..........JJ
My brain is having a moment, lol feels like i've just read through an ikea instruction booklet and i'm still trying to work it out, wow i so loved your humour infused intro! um whilst i'm waiting for my brain to get back online so i can try to answer your Q's, i'll mention whats stuck in my head.
I wouldn't of actually classed the neuro's you've seen as not being any good, both dx you and want you on a DMD so i wouldn't be tossing either of them. The other thing going around in my pea brain, is that i've sort of got the impression, that you feel/think when you got MS is of some vital important.
The length of time you've had MS is not that important in the grand scheme of things, its also subjective so may not be something you can, with accuracy determine. Whats more important is your now, your level of disability, its pattern etc. there is more meaning in your most recent history, than what can (possibly) be made from your childhood.
Ok on to your Q's "Neither neuro mentioned atrophy and after reading about it I googled “normal brain images” and compared them to mine....Why would the neuros not have mentioned this? The simple answer is that maybe there just isn't any, your assuming there is and they didn't tell you. When its more likely that your untrained eye is measuring incorrectly.
"I had around twenty or so spots he said this was a “moderate amount”. Was he correct?" Basically yes, because for that number of lesions, it would of been an under-statement if he'd said minor amount and an over-statement if he's said excessive amount.
"...my symptoms have been very mild the first neuro said my prognosis is very good and the past should indicate what the future will be like. Was he correct?" This isn't really answerable, no one can make that determination with any measure of accuracy because of the unpredicable nature of MS. It only takes one lesion in the right place for everything to change, so really the only answer can be maybe.
Cheers..........JJ
I am so glad you stepped out of the shadows and introduced yourself. Welcome! That is an excellent history and I am glady ou are being seen at an MS clinic and not jst ageneral neurologist, even if it is a boy doctor.
I'll start picking off some of your questions and others can jump in and help-
should the neuro be able to give me a general idea of how long I’ve had MS from looking at my images? Not exactly, but they can tell if you have old lesions and newer lesions if they are active. They can also tell a bit more it you have any hypointense lesions - commonly called black holes. Those occur over time when the lesion collapses the area around it. It takes time for black holes to develop.
Atrophy is difficult to measure unless you are the expert. When you get further into this and have appts with a few extra minutes, be sure to ask your neuro.
Welcome again and I'm sure others will just in to help.
Lulu
I'll start picking off some of your questions and others can jump in and help-
should the neuro be able to give me a general idea of how long I’ve had MS from looking at my images? Not exactly, but they can tell if you have old lesions and newer lesions if they are active. They can also tell a bit more it you have any hypointense lesions - commonly called black holes. Those occur over time when the lesion collapses the area around it. It takes time for black holes to develop.
Atrophy is difficult to measure unless you are the expert. When you get further into this and have appts with a few extra minutes, be sure to ask your neuro.
Welcome again and I'm sure others will just in to help.
Lulu
So here are some more questions I have and now that I look at how long my intro looks on the forum I feel a little embarrassed that I wrote so much and I'm still not done!
A few questions I have- should the neuro be able to give me a general idea of how long I’ve had MS from looking at my images?
I’ve had two sets of images- the first on the 23rd of December last year and the next set (which included both spine sets) in May. They were kind of close together but we were in the process of relocating and the boy dr. wanted to hurry the process along. The same lab did both sets although at two different offices and I kind of feel like the first set is better.
Neither neuro mentioned atrophy and after reading about it I googled “normal brain images” and compared them to mine. Also the other day someone on this forum posted some of her images and I think compared to other images I’ve seen I have quite a bit of atrophy. Why would the neuros not have mentioned this?
Also should I expect a neuro to be able to have a general idea of the types of issues I have from looking at my images? Someone mentioned something about that on this forum and I thought that was fascinating.
Also the first neuro I saw said I had around twenty or so spots he said this was a “moderate amount”. Was he correct? I know there is no connection to the amount of spots and someone’s symptoms- in fact I think I’m definatelly in the “more spots/less symptoms” camp (that totally reminds me of that beer ad- “less fillig/ more taste” or whatever it was) but what I’m really trying to get a sense of is where I fit in on the scale and if he knew what he was talking about.
I feel like there is soooo much that I’ve left out but this is about book length now and I’m afraid it’s too long. But one or two more things:
One of the things I did read about MS was that often it is triggered by an infection. And when I was ten or so I was in the hospital for a week and the doctors never knew exactly what was wrong. They did a bunch of tests and told my parents that the nearest they could figure out was that I had a bacterial and a viral infection at the same time. I don’t know if that would be relevant or not but I was going to make sure I mentioned it to my next doctor.
I was never able to sit down with a neuro to look at my second set of images. I looked at a lot of spine images online because I wanted to understand what I was looking at and to me it appeared that there was a thin white line down one area of my spine that was not mentioned on the report. There were also a few other spinal issues not related to MS and of my brain on the second image the report did state that one of the lesions was larger.
I’m not on any meds now for two reasons. First I’m not sure if I’m going to start or not. I don’t feel like I’ve seen very good neuros or at least neuros that I’ve been able to talk to very well and I would like to talk to someone more about them before I start. In addition since it seems like I’ve had this for over 25 years and my symptoms have been very mild the first neuro said my prognosis is very good and the past should indicate what the future will be like. Was he correct?
The second reason for not being on meds is that we’re in the process of relocating and it is taking a while and I don’t have a doctor right at the moment.
I’m really excited to have introduced myself and I’m looking forward to “meeting” all of you on this forum.
Thanks.
A few questions I have- should the neuro be able to give me a general idea of how long I’ve had MS from looking at my images?
I’ve had two sets of images- the first on the 23rd of December last year and the next set (which included both spine sets) in May. They were kind of close together but we were in the process of relocating and the boy dr. wanted to hurry the process along. The same lab did both sets although at two different offices and I kind of feel like the first set is better.
Neither neuro mentioned atrophy and after reading about it I googled “normal brain images” and compared them to mine. Also the other day someone on this forum posted some of her images and I think compared to other images I’ve seen I have quite a bit of atrophy. Why would the neuros not have mentioned this?
Also should I expect a neuro to be able to have a general idea of the types of issues I have from looking at my images? Someone mentioned something about that on this forum and I thought that was fascinating.
Also the first neuro I saw said I had around twenty or so spots he said this was a “moderate amount”. Was he correct? I know there is no connection to the amount of spots and someone’s symptoms- in fact I think I’m definatelly in the “more spots/less symptoms” camp (that totally reminds me of that beer ad- “less fillig/ more taste” or whatever it was) but what I’m really trying to get a sense of is where I fit in on the scale and if he knew what he was talking about.
I feel like there is soooo much that I’ve left out but this is about book length now and I’m afraid it’s too long. But one or two more things:
One of the things I did read about MS was that often it is triggered by an infection. And when I was ten or so I was in the hospital for a week and the doctors never knew exactly what was wrong. They did a bunch of tests and told my parents that the nearest they could figure out was that I had a bacterial and a viral infection at the same time. I don’t know if that would be relevant or not but I was going to make sure I mentioned it to my next doctor.
I was never able to sit down with a neuro to look at my second set of images. I looked at a lot of spine images online because I wanted to understand what I was looking at and to me it appeared that there was a thin white line down one area of my spine that was not mentioned on the report. There were also a few other spinal issues not related to MS and of my brain on the second image the report did state that one of the lesions was larger.
I’m not on any meds now for two reasons. First I’m not sure if I’m going to start or not. I don’t feel like I’ve seen very good neuros or at least neuros that I’ve been able to talk to very well and I would like to talk to someone more about them before I start. In addition since it seems like I’ve had this for over 25 years and my symptoms have been very mild the first neuro said my prognosis is very good and the past should indicate what the future will be like. Was he correct?
The second reason for not being on meds is that we’re in the process of relocating and it is taking a while and I don’t have a doctor right at the moment.
I’m really excited to have introduced myself and I’m looking forward to “meeting” all of you on this forum.
Thanks.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
