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Possible MS?
Hi, I'm new to this forum (and MS in general). I'm a 41 year old female with possible MS. I have several symptoms (loss of balance, vertigo, headaches, muscle twitches and spasms, tremors, etc.). The worse new symptom starting around 3 or 4 months ago was going from stress incontenince (sp?) to total loss of control. My mother died 6 months ago so I have been under a lot of stress lately. My family doctor sent me to a neuro doc. I have had a VER (normal), a ton of blood work (sed rate elevated, Vit. B12 a little low), and a brain MRI which showed "white matter." In the office visit, the doctor said that I had "brisk" reflexes and that this was not normal (I'm very heavy and she said that my reflexes were very quick to respond and that they were very sharp). She suspects MS but has not made the official diagnosis. She is sending me now for a MRI of the total spine and scheduling me for a spinal tap. Does this sound like MS to any of you. If so, with the multiple symptoms that I have, if I am diagnosed, is this going to be a progressive form, or is it too early to tell? Thanks for any help, information, advised, prayer that you can give me... Becky
I hope your LP went well today (you should have had it about 5 hours ago). My doc says it takes 3 weeks to get the results so I'll keep you in my prayers as well. What were the results of your MRI(s)?
Welcome to the forum. I to am waiting a diagnosis and will keep you in my thoughts and prayers. I have my LP today in about 3 hours and also am very scared. I turned to this forum about 3 months ago and have had nothing but tremondous support. Sometimes I think my family doesnt understand what i am going through and i have no where to turn too but this fabulous forum. They will be here till the end. Just wanted to let you know you are not alone... God Bless and take care
Hey there. She's a Cavalier King Charles Spaniel, not a pup anymore but just as adorable. A total love-bug with ideas of her own. Never met a lap she didn't want to sit on. I got her from a breeder, but I think it's great to go to animal shelters. I can't be physically AT shelters much because it's too heart-breaking. But I do belong to our county Humane Society and participate in their fund-raising stuff.
We love our furry friends, no?
ess
We love our furry friends, no?
ess
I sooooo want your puppy. It is just too cute. I'm an animal lover in general. Our cats will be 10 in March. When they're gone (hopefully not for years from now), we've decided to get a pup. We'll probably go to the pound. Thanks for your comments, by the way.
:)
:)
Hi there. Quix has given you great medical info and I sure couldn't add anything. I did want to say, though, that all of the Limbolanders here share your sentiments. Of course we don't want MS, nobody does, but we do want to know what's wrong. If it can't be fixed, maybe it can be controlled.
We all have to be careful when dealing with the rest of the world, including our own families, who sometimes think we are TRYING to have MS, and that's a sicko thing to do. Not at all true, as you know. So this is a great place to be. The forum members understand automatically. Lots of us restrict most of our symptom talk to just here. It does help.
So stick around. We're a fun bunch too.
ess
We all have to be careful when dealing with the rest of the world, including our own families, who sometimes think we are TRYING to have MS, and that's a sicko thing to do. Not at all true, as you know. So this is a great place to be. The forum members understand automatically. Lots of us restrict most of our symptom talk to just here. It does help.
So stick around. We're a fun bunch too.
ess
WOW - I never knew that I could get this kind of support from people I don't even know. I'm going to try and get a copy of the MRI (brain) this week. When I do, I'll type in the results. As for the bloodwork (I had a bunch of tests done) only the 2 I mentioned were abnormal. I'm making an appointment with my GP for the elevated sed rate (neuro said it was probably an infection and I needed to be on antibotics). As for the b12, I had a gastric bypass in 2003, and the b12 was only a little low, nothing the neuro was worried about. As for the open vs. closed mri. I really don't think I would fit in the closed one for a complete spinal mri. I'm at 290 and it was be almost impossible for me to go any further into the machine than I had to go for the brain mri. As to the spinal, my neuro said that here (Charleston, WV) the hospital would not do the fluoroscopy guidance tap without her trying to do it first.
Now, I'll try for a timeline. At the age approximately 19-23 years, I started to fall easily. Not much else, just "clumsy." In around 1995 (age 28-29) I started having vertigo and abnormal muscle cramps. By 2000, I would have period of being really tired, having trouble walking (legs felt like tree stumps - just so heavy and hard to put one foot in front of the other) and other small things. I continued with the "flare ups" of the vertigo since they started in 1995. I always felt something was wrong and kept asking my GP (I got a new one in 2002) to check me out for something, because something had to be wrong. They ruled out lupus, RA, and so forth. Nothing was showing up, but MS was never mentioned. I never had a lot of symptoms at one time, just different ones or maybe an old one with something new every now and then. About 2 1/2 years ago is when I noticed the "vibration" in my legs on occasion. When my mother passed in June, 2007, a VERY difficult time for me, I noticed in August/September that I was having multiple symptoms of something. My arms and legs would jerk (not all at the same time). My vision was starting to blur (I have new glasses - about a year old now) and most of all, the loss of urine control. In hindsight, if I am diagnosed with MS, is that I've probably had it for quite a few years now. I was so busy taking care of my mother I ignored my own health problems, but I wouldn't change a thing.
I hope this gives you a little better picture of what has been going on with me. What do you think (gut feeling)? That I have it? In a way, it would almost be a relief to find out - I've known for years something was wrong with me - so it would be nice to know what it is so that I can get treatment.
Thanks again, all of you, for being here. God bless..... Becky
Now, I'll try for a timeline. At the age approximately 19-23 years, I started to fall easily. Not much else, just "clumsy." In around 1995 (age 28-29) I started having vertigo and abnormal muscle cramps. By 2000, I would have period of being really tired, having trouble walking (legs felt like tree stumps - just so heavy and hard to put one foot in front of the other) and other small things. I continued with the "flare ups" of the vertigo since they started in 1995. I always felt something was wrong and kept asking my GP (I got a new one in 2002) to check me out for something, because something had to be wrong. They ruled out lupus, RA, and so forth. Nothing was showing up, but MS was never mentioned. I never had a lot of symptoms at one time, just different ones or maybe an old one with something new every now and then. About 2 1/2 years ago is when I noticed the "vibration" in my legs on occasion. When my mother passed in June, 2007, a VERY difficult time for me, I noticed in August/September that I was having multiple symptoms of something. My arms and legs would jerk (not all at the same time). My vision was starting to blur (I have new glasses - about a year old now) and most of all, the loss of urine control. In hindsight, if I am diagnosed with MS, is that I've probably had it for quite a few years now. I was so busy taking care of my mother I ignored my own health problems, but I wouldn't change a thing.
I hope this gives you a little better picture of what has been going on with me. What do you think (gut feeling)? That I have it? In a way, it would almost be a relief to find out - I've known for years something was wrong with me - so it would be nice to know what it is so that I can get treatment.
Thanks again, all of you, for being here. God bless..... Becky
Me, too. I have an old, but regal Fawn Abyssinian who rules with disdain for everybody, but me. We are soul mates. A young long, silky-haired tuxedo who is very polite and sweet with the voice of a newborn, a huge, long-hair mackerel tabby who is lovable, but heedless and like your old college friend who ran around in his boxers and drank beer for breakfast, and a 10 mo Bengal mix who is a riot and very loving.
Welcome to the forum. You'll never find a bunch of better, more caring people. I am a retired physician with MS who hangs out here unofficially and tries to answer questions. I think you're at the right place. No one can diagnose anything online and I am no different, but I can talk about what you have told us in the context of MS.
All of the symptoms that you described are seen frequently in MS, but together they do no diagnose MS. Has there been a distinct attack and remit quality to the appearance of your symptoms. That is have symptoms (old and/or new) appeared within a short period of time, remained for days to months, and improved or disappeared?
A couple things I think you need to do. First get a copy of the MRI report so we can see exactly what was said. Most of the brain itself is white matter, so you must have lesions seen on the MRI that are very suggestive of MS - not surprising with your symptoms. The symptom of reflexes that are too brisk is most often from lesions in the spine. I understand about the difficulty tolerating the closed MRI, but the open MRI has the reputation of not providing as good a resolution as the closed. You and your neurologist should investigate and get an appointment at the best (highest power) and newest you can find even if you have to drive a ways.
I say this because the spinal cord is hard to image even in the closed machines. You want the best chance possible of seeing anything that is there.
As for the spinal tap. They are far scarier to people than they really are. They do the tap "below" where the spinal cord ends. You hear about reactions and this is a headache. It happens less than half the time and you get over it. When you think about what you are trying to diagnose, it is well worth it. I have performed many hundreds of spinal taps myself without a problem. BUT, you say you are heavy. So am I! It is slightly harder to do a tap on someone who is heavy, so I would highly recommend that you request that the spinal tap be done in the hospital radiology department under "fluoroscopy guidance." I had it done this way and it was a breeze! Several here have had it done this way and it went well.
How far back do your symptoms go? How many years?
One final thing. An elevated Sed Rate is not part of MS. It is an indicator of inflammation elsewhere in the body. Could be something as simple as a urine infection, but your neurologist should also have done a large blood test work up for other mimics of MS which in include infections like Lyme Disease, autoimmune disorders like Lupus or Sjogren's, they found a B12 deficiency (What was your level?) and some other metabolic disorders.
If you would answer these questions and give us a little timeline about when the symptoms began, which ones were first, how they have come and gone (or not gone) it would be really helpful. At this point no one here, and likely not your neuro, can tell what form of MS it is, if that is indeed, what it is.
Welocme again, we'll never let you go through any of this alone. You'll have a ton of questions at every step and we'll do what we do to help answer or just support you through the mire. It looks like you are close to a diagnosis. After years of being told these things were stress or being overweight (NOT!) (well except maybe the stress incontinence) I'm sure you have an awkward relief that someone is listening to you, and you might finally get an answer. Yes, we KNOW that you do NOT WANT MS, but we suspect that you desperately want some answers, so the diagnosis of MS would feel almost good - in a perverse kind of way. We've all been there. You're not weird if this is what you are thinking, lol. It's not like something hasn't already been wrong for a long time!
Welcome again, I'll be waiting your answers.
Quix
Welcome to the forum. You'll never find a bunch of better, more caring people. I am a retired physician with MS who hangs out here unofficially and tries to answer questions. I think you're at the right place. No one can diagnose anything online and I am no different, but I can talk about what you have told us in the context of MS.
All of the symptoms that you described are seen frequently in MS, but together they do no diagnose MS. Has there been a distinct attack and remit quality to the appearance of your symptoms. That is have symptoms (old and/or new) appeared within a short period of time, remained for days to months, and improved or disappeared?
A couple things I think you need to do. First get a copy of the MRI report so we can see exactly what was said. Most of the brain itself is white matter, so you must have lesions seen on the MRI that are very suggestive of MS - not surprising with your symptoms. The symptom of reflexes that are too brisk is most often from lesions in the spine. I understand about the difficulty tolerating the closed MRI, but the open MRI has the reputation of not providing as good a resolution as the closed. You and your neurologist should investigate and get an appointment at the best (highest power) and newest you can find even if you have to drive a ways.
I say this because the spinal cord is hard to image even in the closed machines. You want the best chance possible of seeing anything that is there.
As for the spinal tap. They are far scarier to people than they really are. They do the tap "below" where the spinal cord ends. You hear about reactions and this is a headache. It happens less than half the time and you get over it. When you think about what you are trying to diagnose, it is well worth it. I have performed many hundreds of spinal taps myself without a problem. BUT, you say you are heavy. So am I! It is slightly harder to do a tap on someone who is heavy, so I would highly recommend that you request that the spinal tap be done in the hospital radiology department under "fluoroscopy guidance." I had it done this way and it was a breeze! Several here have had it done this way and it went well.
How far back do your symptoms go? How many years?
One final thing. An elevated Sed Rate is not part of MS. It is an indicator of inflammation elsewhere in the body. Could be something as simple as a urine infection, but your neurologist should also have done a large blood test work up for other mimics of MS which in include infections like Lyme Disease, autoimmune disorders like Lupus or Sjogren's, they found a B12 deficiency (What was your level?) and some other metabolic disorders.
If you would answer these questions and give us a little timeline about when the symptoms began, which ones were first, how they have come and gone (or not gone) it would be really helpful. At this point no one here, and likely not your neuro, can tell what form of MS it is, if that is indeed, what it is.
Welocme again, we'll never let you go through any of this alone. You'll have a ton of questions at every step and we'll do what we do to help answer or just support you through the mire. It looks like you are close to a diagnosis. After years of being told these things were stress or being overweight (NOT!) (well except maybe the stress incontinence) I'm sure you have an awkward relief that someone is listening to you, and you might finally get an answer. Yes, we KNOW that you do NOT WANT MS, but we suspect that you desperately want some answers, so the diagnosis of MS would feel almost good - in a perverse kind of way. We've all been there. You're not weird if this is what you are thinking, lol. It's not like something hasn't already been wrong for a long time!
Welcome again, I'll be waiting your answers.
Quix
Thanks so much for the info. I really hope that the doc can get good enough pics from this mri so that I don't have to do the spinal. I think what they are going to do is do the complete spine without contrast and then redo it (same day) with contrast.
Have any of you guys had the spinal done under general, and not just been numbed? I tend to have a reaction from numbing agents, so my doc is looking into having in done under a general. My only problem with that is that I've been put out twice (or should have been) for a colonoscopy and endoscope and I was awake and remembered the whole thing both times. I really don't want to remember a spinal without being numbed.
Have a great week everyone and God bless.... I will keep you posted as I have my tests!
Becky
PS: hbananas, your baby is beautiful!
Have any of you guys had the spinal done under general, and not just been numbed? I tend to have a reaction from numbing agents, so my doc is looking into having in done under a general. My only problem with that is that I've been put out twice (or should have been) for a colonoscopy and endoscope and I was awake and remembered the whole thing both times. I really don't want to remember a spinal without being numbed.
Have a great week everyone and God bless.... I will keep you posted as I have my tests!
Becky
PS: hbananas, your baby is beautiful!
Pretty kitties. See mine? Anyway, since you're going to have a C-spine MRI. One thing I never dreamed of was that the operator would tell me not to swallow for up to 3 minutes at a time. I'd have practiced and got my distracting techniques down before the scan instead of halfway through it. Yep, I caved and swallowed about once a minute until I figured it out.
Here's Holly's super duper distraction technique for the prevention of swallowing:
Form a little reservoir using your tongue to make a cup up against the roof of your mouth. As you start forming spit, suck it up into the little reservoir instead of letting it drip down into your throat, kind of like if you were gathering some up to spit on something. Meanwhile recite something over and over to yourself--personal faves were the Lord's Prayer and 23rd Psalm. Hmm, maybe I'll memorize something new for the next one.
Was everyone else told not to swallow during C-spine MRIs? She had a heck of a time not getting artifacts from all my dental work, too, but I couldn't do anything about that. I was led to believe that spines HAD to be done in the closed machine, but maybe that was just because I was already pitching a fit about having to go two different times because they did my brain in the open one.
Here's Holly's super duper distraction technique for the prevention of swallowing:
Form a little reservoir using your tongue to make a cup up against the roof of your mouth. As you start forming spit, suck it up into the little reservoir instead of letting it drip down into your throat, kind of like if you were gathering some up to spit on something. Meanwhile recite something over and over to yourself--personal faves were the Lord's Prayer and 23rd Psalm. Hmm, maybe I'll memorize something new for the next one.
Was everyone else told not to swallow during C-spine MRIs? She had a heck of a time not getting artifacts from all my dental work, too, but I couldn't do anything about that. I was led to believe that spines HAD to be done in the closed machine, but maybe that was just because I was already pitching a fit about having to go two different times because they did my brain in the open one.
I believe you misunderstood when the doctor was telling you the results of the brain MRI. They would have said, they see changes such as lesions or spots in the "white matter of your brain." We all have grey matter and white matter. MS only attacks the white matter of the brain.
It's a shame that you have to have your spinal MRI in the open MRI. These pictures are not as clear and precise at seeing lesions. And from what you describe, I would suspect that you do have a lesion or lesions in your spine. YOur bladder problems also suggest a spinal lesion.
So if on physical examination you show neurological changes, and you have white matter lesions and a lesion or lesions seen on your spinal MRI, I believe your doctor would feel comfortable saying that it's possible MS. Maybe she will not order the LP after all. It's not actually stamped in concrete that an LP HAS to be done if you are showing neurological defects, have changes on MRI and are having relapses and remissions. But if that's what she orders, than be sure that we will be here to answer any questions you may have.
Now to your question about progressive MS that I forgot to answer...it is too soon to tell if you have the progressive form, by what you have described. Your age at diagnosis IS in your favor on that one. The true progressive form with no relapses or remisssion is rare.
Keep us posted, will you?
Heather
It's a shame that you have to have your spinal MRI in the open MRI. These pictures are not as clear and precise at seeing lesions. And from what you describe, I would suspect that you do have a lesion or lesions in your spine. YOur bladder problems also suggest a spinal lesion.
So if on physical examination you show neurological changes, and you have white matter lesions and a lesion or lesions seen on your spinal MRI, I believe your doctor would feel comfortable saying that it's possible MS. Maybe she will not order the LP after all. It's not actually stamped in concrete that an LP HAS to be done if you are showing neurological defects, have changes on MRI and are having relapses and remissions. But if that's what she orders, than be sure that we will be here to answer any questions you may have.
Now to your question about progressive MS that I forgot to answer...it is too soon to tell if you have the progressive form, by what you have described. Your age at diagnosis IS in your favor on that one. The true progressive form with no relapses or remisssion is rare.
Keep us posted, will you?
Heather
Thanks for your comments. On the brain MRI, my doc said that there was white matter that was consistent with MS or ministrokes. This MRI was done without contrast. She had ordered contrast, but they had put me in the regular MRI tube and it was soooo tight it took all the prayer and will power I had just to make it through the first scan without the contrast. My doc, after reviewing the one MRI scan said that she didn't think another of the brain with contrast would show her anything more. Since I have not had any symptoms of the ministrokes, she is leaning towards ms. I've had symptoms on and off for years. Sometimes my legs feel like there is a vibrator inside them (such a strange feeling). There are times that I feel an electrical shock run down my body, causing my arm and then my left to jerk (always on the same side). Also a very weird feeling. I've been experiences double and blurred vision. I tell you, the list just goes on and on. I've know for years that something was "right" with me, but my doc just blamed my weight, stress, and so forth. Only with the new symptoms that have come forward in the last few months did she send me to the neuro doc. When they do the spinal MRI (both without and with contrast) I'm going to a place that has the open machine.
I'm not usually a chicken, but the spinal tap (lumbar puncture?) really scares me. This is one test I'm not looking forward to at all, but I guess that my doc feels that it is necessary. She said that it would take 3 weeks to get the results back and that if it comes back positive, she is starting me on medication right a way, so I think she really feels that MS is the problem, but just needs a little more confirmation, do you think? Thanks again.
I'm not usually a chicken, but the spinal tap (lumbar puncture?) really scares me. This is one test I'm not looking forward to at all, but I guess that my doc feels that it is necessary. She said that it would take 3 weeks to get the results back and that if it comes back positive, she is starting me on medication right a way, so I think she really feels that MS is the problem, but just needs a little more confirmation, do you think? Thanks again.
WELCOME to the MS Forum. I am so sorry to hear about the loss of your mother. I just lost my daddy two weeks ago. So now I am without a mother AND a father. I really feel for you.
Yeah, your stress level probably has not helped your health.
The description about your MRI doesn't tell me enough. Everyone has "white matter." Did they see lesions or spots in your white matter?
Your symptoms do sound alot like MS, be really can be the symptoms from so many other disorders. While your doctors get this all straightened out, we will be on your team throughout the whole ordeal. You have our word.
Again welcome. We are glad you found us.
Heather
Yeah, your stress level probably has not helped your health.
The description about your MRI doesn't tell me enough. Everyone has "white matter." Did they see lesions or spots in your white matter?
Your symptoms do sound alot like MS, be really can be the symptoms from so many other disorders. While your doctors get this all straightened out, we will be on your team throughout the whole ordeal. You have our word.
Again welcome. We are glad you found us.
Heather
WELCOME TO OUR CYBER FAMILY AND SORRY THAT THE POSSIBLE MS BROUGHT YOU TO US ,BUT GLAD YOU HAVE JOINED US.
MANY DISORDERS MIMIC MS AND CAN CAUSE LESIONS.
WITH YOUR B-12 LEVELS BEING A LITTLE LOW , ARE THE TREATING IT ?
YOU DEFINATELY HAVE NEUROLOGICAL DEFICITS.
HYPER-REFLEXES ARE ASSOCIATED WITH NEUROLOGICAL DEFICITS.
SORRY TO HEAR ABOUT THE LOSS OF YOUR MOTHER AND YOUR STRESS IS UNDERSTANDABLE.WITH STRESS IT CAN BRING OUT THE NASTY SIDES OF NEUROLOGICAL DEFICITS.
WITH MS, IT PROGRESSES DIFFERENTLEY IN EACH OF US,THIS DISEASE IS LIKE AN INDIVIDUAL FINGERPRINT.
YOUR NEURO SEEMS TO BE UPFRONT AND FINDING ANSWERS AGGRESSIVELY.
WITH NEUROLOGICAL SYMPTOMS,THEY CAN BE TREATED INDIVIDUAL UNTIL THEY SUBSIDE.
WITH PROGRESSIVE MS,ITS CONTINUOUS SYMPTOMS WITHOUT REMISSION AND THE SYMPTOMS ARE EXTREME.
YOUR ON THE RIGHT ROAD WITH YOUR NEURO.
ONCE AGAIN WELCOME
T
MANY DISORDERS MIMIC MS AND CAN CAUSE LESIONS.
WITH YOUR B-12 LEVELS BEING A LITTLE LOW , ARE THE TREATING IT ?
YOU DEFINATELY HAVE NEUROLOGICAL DEFICITS.
HYPER-REFLEXES ARE ASSOCIATED WITH NEUROLOGICAL DEFICITS.
SORRY TO HEAR ABOUT THE LOSS OF YOUR MOTHER AND YOUR STRESS IS UNDERSTANDABLE.WITH STRESS IT CAN BRING OUT THE NASTY SIDES OF NEUROLOGICAL DEFICITS.
WITH MS, IT PROGRESSES DIFFERENTLEY IN EACH OF US,THIS DISEASE IS LIKE AN INDIVIDUAL FINGERPRINT.
YOUR NEURO SEEMS TO BE UPFRONT AND FINDING ANSWERS AGGRESSIVELY.
WITH NEUROLOGICAL SYMPTOMS,THEY CAN BE TREATED INDIVIDUAL UNTIL THEY SUBSIDE.
WITH PROGRESSIVE MS,ITS CONTINUOUS SYMPTOMS WITHOUT REMISSION AND THE SYMPTOMS ARE EXTREME.
YOUR ON THE RIGHT ROAD WITH YOUR NEURO.
ONCE AGAIN WELCOME
T
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