Waiting and worrying
Hi Everyone,
I am new here, so I will tell you my story (and thanks in advance for reading!)
Last thursday I had an apointment with a neurologist, who told me I have a probable case of relapsing/remitting MS. My neuro exam was normal, as I am not symptomatic at the moment. He is sending me for an MRI and spinal tap, but there is a very long wait time.
My family doc decided to send me to see a neurologist this summer, after I had 2 "episodes", one at the beginning of the summer, lasting almost 5 weeks, and one at the end of the summer, lasting about 3 weeks. Both episodes began during an intense heat wave. During these episodes, I had tremors, electrical shocks/pins and needles in my limbs and face, intense fatigue, fine-motor issues, troubles with over/under shooting when reaching for things, balance issues, stiffness and muscle cramps (mainly in my legs), feeling as though I wasn't aware of where my limbs were (this sounds wierd, and is difficult to describe), headaches and dizziness. I have had other episodes like this (maybe 5 times in the past 9 years) but never as severe, or lasting as long. each time my family doctor would run a bunch of tests, prescribe me some antiinflammatories to deal with the stiffness, which did nothing, but by the time she decided to send me for further investigation, the symptoms would be gone. This summer she was going to prescribe neurontin for the nerve pain, but again, by the time she got around to that, I was better.
So, at my neuro apointment last week, the neurologist was very thorough, asking loads of questions. He asked me if I had any bladder issues, and I said "well, a little stress incontinence, after having 4 kids". But in retrospect, that only happened a few times, and only during the first episode I had this summer...and it wasn't a little, it was a LOT...I literally peed my pants, with no warning, and no ability to stop it. It happened a few times over the following week, but hasn't occured since then. But since then, I've had issues, where, even though my bladder is full, it takes forever to start going and then it takes a long time to finish. My family doctor examined me and said she could see no reason for this bladder problem. I had no idea that bladder issues were common in MS, so when he asked, I didn't give him all the gory details. I also neglected to tell him about these wierd sensations I get in my upper abdomen/lower chest...like someone is tightening a band around it. It's excruciating when it happens. I've told my family doctor and she just shrugged and told me it was probably esophageal spasms. But again, in retrospect, this only happens if I am very over heated, like after running, or if I have a fever). I also have a spot between 2 of my ribs near my spine, on the right side, that is painful...it is sort of an "itchy" pain, if that makes sense. I had it all last winter, and saw the doctor a few times, who told me it was muscular. She recommended motrin and a heating pad. The motrin did nothing, and the heat made it WAAAAY worse. She ran a blood test to check my vitamin D levels, for whatever reason, and it came back that I had NO vitamin D in my system (since then I've seen an endocrinologist who prescribed ergocalciferol to get my levels back up, and now I take 5000IU a day). Anyway, this area is about the size of an apple, and interestingly, in the exact same spot on the left side of my spine, there is an area that is numb. I can feel pressure, but that's it. And it's been like that since 2001. I didn't tell the neuro. that either. He asked me if my symptoms were worse after a hot shower, and yes, they get slightly worse. But I forgot to tell him that if I have a really hot shower, I get an intense itching in my limbs that will last until I've cooled down. The itching is so bad, it's almost painful and makes me feel like throwing up. It's like someone is sticking me with hundreds of pins. I don't have a rash, or hives or anything, and it's not soap, because it happens even if i don't use any soap at all.
So at the moment, I don' t have any issues with tremors or movement or balance, but I have the chronic painful spot on my back, and the itchy when I'm hot, and this lingering fatigue and stiffness.
I thought about making another apointment with the neurologist to tell him all these extra things that i didn't tell him (I didn't think was relevant until I checked online about MS, since that's what he told me I most likely have), but I don't think it changes the tests he is going to run anyway. He did tell me to call if I had another episode and he would see me straight away. I'm petrified of having another one!! They are truely aweful, and I have 4 kids to take care of!
He also told me that there is a chance that nothing will show up on MRI. He seems fairly convinced that this is what's going on, and told me that unless he can find another explanation for my symptoms (and he didn't even hear ALL of them) than this is what my diagnosis would be. I really like this doctor, he has an excellent reputatation and bedside manner.
My only other issue at the moment....my husband doesn't think I have this. I think he needs to see proof on an MRI, which I told him, there may not be. I'm not sure if he's scared and this is his way of coping. I just want my fears to be validated, not poo-pood. He keeps telling me not to worry, that I am fine, and that none of these episodes are related and it's probably something minor.
So, basically (if you've managed to read this far, haha) i have these questions:
1. How long does it generally take people with the relapsing/remitting MS to get a diagnosis? I've heard it can take very long.
2. Has anyone here recieved a diagnosis, but had a negative MRI?
3. Is anyone else dealing with a family member who is telling you nothing is wrong? And how do you manage with that?
Thanks so much for any advice you can give me
MusicMom
I am new here, so I will tell you my story (and thanks in advance for reading!)
Last thursday I had an apointment with a neurologist, who told me I have a probable case of relapsing/remitting MS. My neuro exam was normal, as I am not symptomatic at the moment. He is sending me for an MRI and spinal tap, but there is a very long wait time.
My family doc decided to send me to see a neurologist this summer, after I had 2 "episodes", one at the beginning of the summer, lasting almost 5 weeks, and one at the end of the summer, lasting about 3 weeks. Both episodes began during an intense heat wave. During these episodes, I had tremors, electrical shocks/pins and needles in my limbs and face, intense fatigue, fine-motor issues, troubles with over/under shooting when reaching for things, balance issues, stiffness and muscle cramps (mainly in my legs), feeling as though I wasn't aware of where my limbs were (this sounds wierd, and is difficult to describe), headaches and dizziness. I have had other episodes like this (maybe 5 times in the past 9 years) but never as severe, or lasting as long. each time my family doctor would run a bunch of tests, prescribe me some antiinflammatories to deal with the stiffness, which did nothing, but by the time she decided to send me for further investigation, the symptoms would be gone. This summer she was going to prescribe neurontin for the nerve pain, but again, by the time she got around to that, I was better.
So, at my neuro apointment last week, the neurologist was very thorough, asking loads of questions. He asked me if I had any bladder issues, and I said "well, a little stress incontinence, after having 4 kids". But in retrospect, that only happened a few times, and only during the first episode I had this summer...and it wasn't a little, it was a LOT...I literally peed my pants, with no warning, and no ability to stop it. It happened a few times over the following week, but hasn't occured since then. But since then, I've had issues, where, even though my bladder is full, it takes forever to start going and then it takes a long time to finish. My family doctor examined me and said she could see no reason for this bladder problem. I had no idea that bladder issues were common in MS, so when he asked, I didn't give him all the gory details. I also neglected to tell him about these wierd sensations I get in my upper abdomen/lower chest...like someone is tightening a band around it. It's excruciating when it happens. I've told my family doctor and she just shrugged and told me it was probably esophageal spasms. But again, in retrospect, this only happens if I am very over heated, like after running, or if I have a fever). I also have a spot between 2 of my ribs near my spine, on the right side, that is painful...it is sort of an "itchy" pain, if that makes sense. I had it all last winter, and saw the doctor a few times, who told me it was muscular. She recommended motrin and a heating pad. The motrin did nothing, and the heat made it WAAAAY worse. She ran a blood test to check my vitamin D levels, for whatever reason, and it came back that I had NO vitamin D in my system (since then I've seen an endocrinologist who prescribed ergocalciferol to get my levels back up, and now I take 5000IU a day). Anyway, this area is about the size of an apple, and interestingly, in the exact same spot on the left side of my spine, there is an area that is numb. I can feel pressure, but that's it. And it's been like that since 2001. I didn't tell the neuro. that either. He asked me if my symptoms were worse after a hot shower, and yes, they get slightly worse. But I forgot to tell him that if I have a really hot shower, I get an intense itching in my limbs that will last until I've cooled down. The itching is so bad, it's almost painful and makes me feel like throwing up. It's like someone is sticking me with hundreds of pins. I don't have a rash, or hives or anything, and it's not soap, because it happens even if i don't use any soap at all.
So at the moment, I don' t have any issues with tremors or movement or balance, but I have the chronic painful spot on my back, and the itchy when I'm hot, and this lingering fatigue and stiffness.
I thought about making another apointment with the neurologist to tell him all these extra things that i didn't tell him (I didn't think was relevant until I checked online about MS, since that's what he told me I most likely have), but I don't think it changes the tests he is going to run anyway. He did tell me to call if I had another episode and he would see me straight away. I'm petrified of having another one!! They are truely aweful, and I have 4 kids to take care of!
He also told me that there is a chance that nothing will show up on MRI. He seems fairly convinced that this is what's going on, and told me that unless he can find another explanation for my symptoms (and he didn't even hear ALL of them) than this is what my diagnosis would be. I really like this doctor, he has an excellent reputatation and bedside manner.
My only other issue at the moment....my husband doesn't think I have this. I think he needs to see proof on an MRI, which I told him, there may not be. I'm not sure if he's scared and this is his way of coping. I just want my fears to be validated, not poo-pood. He keeps telling me not to worry, that I am fine, and that none of these episodes are related and it's probably something minor.
So, basically (if you've managed to read this far, haha) i have these questions:
1. How long does it generally take people with the relapsing/remitting MS to get a diagnosis? I've heard it can take very long.
2. Has anyone here recieved a diagnosis, but had a negative MRI?
3. Is anyone else dealing with a family member who is telling you nothing is wrong? And how do you manage with that?
Thanks so much for any advice you can give me
MusicMom
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