Feeling so lost and tired of being in limbo
Hello,
I would like to introduce myself. I am new to this board and have been reading so many of the threads here. Which have been very helpful. I was hoping for some words of wisdom from anyone willing to tell me what they think. I have not yet been dx with ms, but have had MRI of brain in 2011 that showed one lesion in the white matter.
MRI was repeated this past september. I am very sensitive to heat and wasn't outside for very long but when I came in, I noticed something very different happening to me. While sitting on the couch, my legs started to go numb. They were very heavy and didn't feel like they were mine, I could look at them and knew they were there, but they didn't feel right. Also my speech started to slur, like a lot. My husband told me I sounded drunk. ( I don't drink) and my gait was all over the place, couldn't walk a straight line. My legs were so shaky and wobbly under me. I had noticed a incontinence problem with this too. My memory has been declining rapidly and I was unable to complete the simplest of tasks without forgetting how. I would loose my words and forgot the name of things, such as " chair" or table, etc. For example: I put my coffee in the microwave and shut the door and then my mind went blank, I just starred at the control panel forgetting what I was suppose to do next. My body would also have tremors with movement.. Like my head would just bobble like and I couldn't stop it. My left leg and arm will go numb still since this first bout in sept and I will feel tingling down them, I've described the feeling like electricity running through them. Also, this doesn't happen too often but has been happening over the last several years but recently more frequently and that is when I am resting in bed I will be woke up from my body vibrating, kind of like in rythm like a cat does when purring. It can be pretty strong at times and it only last for a couple minutes and then goes away. My muscle weakness has dropped by at least 60 % and now it is at the point if I try and do physical attivity such as taking a walk around the block, my legs get so weak that my left leg will go numb and It feels like I have to slide my leg forward and it drops down heavy on the ground.I needed the assistance of holding onto my husbands arm to keep walking till we got home. I'm 46 yrs old and over the last year my health has gone down hill greatly. I started to complain to my pcp 2 years ago about loosing my balance for no reason, and I would have periods of dropping things like my hair brush, or would have to focus when picking up a glass so as not to drop it. That is why the MRI was done 2 years ago.
Balance problems are much worse now, and I had my first bout of vertigo ever in my life on oct 1st of this month, and I fell over. It lasted about 12+ hours. The room stopped spinning but my eyes whenever I moved them would make me real dizzy. I couldn't walk without assistance. I still have balance problems and sensory issues. Anyway this mri showed the same lesion but they stated " There is a solitary hyperintensity noted within the subinsular white matter on the left". " Differential diagnostic pissibilities include demyelinating process such as multiple sclerosis, microvascular ischemic change and less likely infectious or neoplastic entities."
My neuro doctor simply said that the lesion isn't where ms lesions are found so she is ruling ms out and that for all I know the lesion could have been there from birth. She ordered no other tests to be sure of this. They sent me for a neuropyschological test for my cognitive issues. The pysch doctor spoke to me at the end of that exam and told me it's all in my head basically and dx me with depression and anxiety. I about lost it. I was struggling real bad that day during the testing. It was a long walk from the parking garage to her office and I spent all day there, so I was in a lot of distress. She probably saw the look on my face and the shakiness of my head because of the distress and simply thought to herself " depression" . She tried to tell me about Rx and I told her basically what she could do with that Rx.
I should mention all blood work has come back normal. Lupus was ruled out and b-12 level was great. I am positive for the HLA-B27 gene. My rheumy told me about that and told me to make sure I mention it to any other doctors that I see.
I feel so discouraged that no one seems to care about helping me. I had to quit my job at a dental office because I couldn't do my job at the front desk because my memory issues got bad.
Sorry this is so long, I am hoping someone here can relate to me and have some words of encouragement.
Thanks :)
I would like to introduce myself. I am new to this board and have been reading so many of the threads here. Which have been very helpful. I was hoping for some words of wisdom from anyone willing to tell me what they think. I have not yet been dx with ms, but have had MRI of brain in 2011 that showed one lesion in the white matter.
MRI was repeated this past september. I am very sensitive to heat and wasn't outside for very long but when I came in, I noticed something very different happening to me. While sitting on the couch, my legs started to go numb. They were very heavy and didn't feel like they were mine, I could look at them and knew they were there, but they didn't feel right. Also my speech started to slur, like a lot. My husband told me I sounded drunk. ( I don't drink) and my gait was all over the place, couldn't walk a straight line. My legs were so shaky and wobbly under me. I had noticed a incontinence problem with this too. My memory has been declining rapidly and I was unable to complete the simplest of tasks without forgetting how. I would loose my words and forgot the name of things, such as " chair" or table, etc. For example: I put my coffee in the microwave and shut the door and then my mind went blank, I just starred at the control panel forgetting what I was suppose to do next. My body would also have tremors with movement.. Like my head would just bobble like and I couldn't stop it. My left leg and arm will go numb still since this first bout in sept and I will feel tingling down them, I've described the feeling like electricity running through them. Also, this doesn't happen too often but has been happening over the last several years but recently more frequently and that is when I am resting in bed I will be woke up from my body vibrating, kind of like in rythm like a cat does when purring. It can be pretty strong at times and it only last for a couple minutes and then goes away. My muscle weakness has dropped by at least 60 % and now it is at the point if I try and do physical attivity such as taking a walk around the block, my legs get so weak that my left leg will go numb and It feels like I have to slide my leg forward and it drops down heavy on the ground.I needed the assistance of holding onto my husbands arm to keep walking till we got home. I'm 46 yrs old and over the last year my health has gone down hill greatly. I started to complain to my pcp 2 years ago about loosing my balance for no reason, and I would have periods of dropping things like my hair brush, or would have to focus when picking up a glass so as not to drop it. That is why the MRI was done 2 years ago.
Balance problems are much worse now, and I had my first bout of vertigo ever in my life on oct 1st of this month, and I fell over. It lasted about 12+ hours. The room stopped spinning but my eyes whenever I moved them would make me real dizzy. I couldn't walk without assistance. I still have balance problems and sensory issues. Anyway this mri showed the same lesion but they stated " There is a solitary hyperintensity noted within the subinsular white matter on the left". " Differential diagnostic pissibilities include demyelinating process such as multiple sclerosis, microvascular ischemic change and less likely infectious or neoplastic entities."
My neuro doctor simply said that the lesion isn't where ms lesions are found so she is ruling ms out and that for all I know the lesion could have been there from birth. She ordered no other tests to be sure of this. They sent me for a neuropyschological test for my cognitive issues. The pysch doctor spoke to me at the end of that exam and told me it's all in my head basically and dx me with depression and anxiety. I about lost it. I was struggling real bad that day during the testing. It was a long walk from the parking garage to her office and I spent all day there, so I was in a lot of distress. She probably saw the look on my face and the shakiness of my head because of the distress and simply thought to herself " depression" . She tried to tell me about Rx and I told her basically what she could do with that Rx.
I should mention all blood work has come back normal. Lupus was ruled out and b-12 level was great. I am positive for the HLA-B27 gene. My rheumy told me about that and told me to make sure I mention it to any other doctors that I see.
I feel so discouraged that no one seems to care about helping me. I had to quit my job at a dental office because I couldn't do my job at the front desk because my memory issues got bad.
Sorry this is so long, I am hoping someone here can relate to me and have some words of encouragement.
Thanks :)
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