I find myself posting on this board after numerous doctor visits and no answers. I am becoming fed up at this point. I realize no one on this forum can give me a diagnosis but I would like some feedback and thoughts on my experience and symptoms. I apologize in advance for the length of this post!
I usually go in for a physical every year but had skipped it last year and did not make it in until August of this year. By this time, since September last year, I had lost 20-25 lbs without trying, and had been experiencing motion sickness for at least six months. I have also have a constant static sound in my ears with occasional muting of one ear at a time for a few seconds. I have trouble hearing when there is a lot of background noise. I am constantly asking my family members to repeat themselves because I do not understand what they are saying. I have experienced the feeling of dizziness from standing on a bridge over a lake watching the water move, rocking in a glider, and watching my daughter play a motion video game on my ipad. I had had surgery in February, and passed out the day after and experienced dizzy spells for about 5 days after. I had also been experiencing overwhelming tiredness in the middle of the afternoons, where I would need to go to sleep. My cognitive functioning has been declining. I find myself having great difficulty finding the word I want to use at times and sometimes lose my train of thought with no recovery. This is while I am working and am focused on one thing, not trying to do a million things at a time. I also have great difficulty concentrating and focusing at times.
I have noticed very occasional slurred speech as well. It's weird, like I lose control of the left side of my mouth. I have occasional sharp, stabbing type pains deep in my muscles. These are very random in time and place. I also have random muscles twitches, in random places. My left leg constantly has a tingling sensation in it, the way it feels when circulation has been cut off and returns. The feeling is subtle, but present. Probably once a week, I have aching pain and greater tingling from my lower back/hip to my foot. When this happens, I take some advil and it feels better. I have had this for some time and it used to only radiate to my knee, causing much aching in my knee. I always just thought it was a pinched nerve but am starting to wonder if its something else.
I have had migraine headaches for the past 4.5 years. The first one I had was a few days before my daughter was born. I had a visual aura with it where I had blind spots in my vision. I am unable to recall exactly but I think the spots were in the middle of my visual field. I remember being in Target and trying to look at the prices on the shelves and not being able to see them when looking directly at them. The previous evening, I also had visual symptoms and a headache after they resolved. The visual symptoms the following day lasted at least an hour. I can feel the migraines coming on. It's difficult to describe. The best way is that I am aware of my eye area before the pain. I have weakness or it takes more effort to keep my eye open and/or focus. The pain comes gradually, I take my medicine and the headache usually goes away. A couple of times recently, I have awoken in the middle of the night with the migraine pain and the pain has been more of a sharp stabbing pain that was worse when laying down.
I also leak urine, when I sneeze, cough, etc. and I think when my bladder is just full. I suspect I am leaking urine at times and don't realize it. At times, I have to get up in the middle of the night, sometimes 2-3 times to urinate and there are times when I have to urinate 5 times in the morning within the first 2 hours or staring my day. I only drink one (4oz) cup of coffee in the morning, so its not like I am drinking a lot of caffeine. Otherwise, I only drink water. I have lost sensation in my genitals. I can't really feel much. I also have hot flashes at night. I don't sweat but I have to have our ceiling fan on turbo speed to be comfortable. This is completely unusual for me, as I am usually cold. My usual temperature of 97.6 has been steady at 99.5 with no known infection for the past few months at least. I don't tolerate heat well and I have not for many years. I just avoid going outside as much as possible if the temp is over 80 degrees. My symptoms increase when I am tired which is often because I don't sleep well.
So, I went to my GP in August, who sent me to a neuro-ENT for the Meneire's Disease type symptoms. He did an exam and was most concerned that I was unable to walk a straight line. I do recall I was feeling unwell that day and had a migraine come on later in the day. He sent me to VRT and the therapist recommended I see a neurologist because she was unsure of the origin of the symptoms. Any eye exercises or assessments she did involving my eyes brought on migraine also.
Off to my GP I went for the referral to the neuro and an MRI. When my GP did the exam, I had the pain in my left leg as I described above, and she found weakness in my left side that day, along with balance issues and differing sensitivity in my legs. She referred me to a Neuro-Opthamologist as well. On my visit with him, he didn't find anything. He told me I was actually farsighted, although I have been corrected for nearsightedness always, and told me the double vision or ghosting I saw when the lights were out and also after my pupils were dilated was "blurry" vision. My GP had wanted him to do EPT but it was not done.
This past week, I visited the neurologist, whom I felt had his mind made up that this was "stress" within the first few minutes of seeing me. I don't deny that I have stress in my life. I think I do a decent job of managing and taking care of myself. I do not believe that it the cause of my symptoms. The neurologist did not do some of the tests my GP and PT did and did not order additional testing. My GP also ordered a blood panel in August and my VitD level was 32. I started taking supplements on my own after reading about the optimal levels and importance of VitD. The PT also stated there is a test available to determine if the origin of dizziness is vestibular or central, but that has not been done either. The brain and brain stem MRI was negative.
At this point I am fed up and frustrated. I have had numerous dr. visits in the past 2 months, used a lot of gas and time to attend and have nothing to show for it. I am not excessively worried that I have MS, I would just like to know so that I can start appropriate treatment to slow the progression if that is what it is. I am not one to run to the doctor for every little twitch and pain and I don't appreciate the neuro blowing this off as stress without additional testing or consideration.
Has anyone else had similar symptoms and experiences trying to get a diagnosis? Is it valid for me to be concerned about my symptoms being neurological/MS or am I overreacting? Any thoughts or feedback will be appreciated!
I usually go in for a physical every year but had skipped it last year and did not make it in until August of this year. By this time, since September last year, I had lost 20-25 lbs without trying, and had been experiencing motion sickness for at least six months. I have also have a constant static sound in my ears with occasional muting of one ear at a time for a few seconds. I have trouble hearing when there is a lot of background noise. I am constantly asking my family members to repeat themselves because I do not understand what they are saying. I have experienced the feeling of dizziness from standing on a bridge over a lake watching the water move, rocking in a glider, and watching my daughter play a motion video game on my ipad. I had had surgery in February, and passed out the day after and experienced dizzy spells for about 5 days after. I had also been experiencing overwhelming tiredness in the middle of the afternoons, where I would need to go to sleep. My cognitive functioning has been declining. I find myself having great difficulty finding the word I want to use at times and sometimes lose my train of thought with no recovery. This is while I am working and am focused on one thing, not trying to do a million things at a time. I also have great difficulty concentrating and focusing at times.
I have noticed very occasional slurred speech as well. It's weird, like I lose control of the left side of my mouth. I have occasional sharp, stabbing type pains deep in my muscles. These are very random in time and place. I also have random muscles twitches, in random places. My left leg constantly has a tingling sensation in it, the way it feels when circulation has been cut off and returns. The feeling is subtle, but present. Probably once a week, I have aching pain and greater tingling from my lower back/hip to my foot. When this happens, I take some advil and it feels better. I have had this for some time and it used to only radiate to my knee, causing much aching in my knee. I always just thought it was a pinched nerve but am starting to wonder if its something else.
I have had migraine headaches for the past 4.5 years. The first one I had was a few days before my daughter was born. I had a visual aura with it where I had blind spots in my vision. I am unable to recall exactly but I think the spots were in the middle of my visual field. I remember being in Target and trying to look at the prices on the shelves and not being able to see them when looking directly at them. The previous evening, I also had visual symptoms and a headache after they resolved. The visual symptoms the following day lasted at least an hour. I can feel the migraines coming on. It's difficult to describe. The best way is that I am aware of my eye area before the pain. I have weakness or it takes more effort to keep my eye open and/or focus. The pain comes gradually, I take my medicine and the headache usually goes away. A couple of times recently, I have awoken in the middle of the night with the migraine pain and the pain has been more of a sharp stabbing pain that was worse when laying down.
I also leak urine, when I sneeze, cough, etc. and I think when my bladder is just full. I suspect I am leaking urine at times and don't realize it. At times, I have to get up in the middle of the night, sometimes 2-3 times to urinate and there are times when I have to urinate 5 times in the morning within the first 2 hours or staring my day. I only drink one (4oz) cup of coffee in the morning, so its not like I am drinking a lot of caffeine. Otherwise, I only drink water. I have lost sensation in my genitals. I can't really feel much. I also have hot flashes at night. I don't sweat but I have to have our ceiling fan on turbo speed to be comfortable. This is completely unusual for me, as I am usually cold. My usual temperature of 97.6 has been steady at 99.5 with no known infection for the past few months at least. I don't tolerate heat well and I have not for many years. I just avoid going outside as much as possible if the temp is over 80 degrees. My symptoms increase when I am tired which is often because I don't sleep well.
So, I went to my GP in August, who sent me to a neuro-ENT for the Meneire's Disease type symptoms. He did an exam and was most concerned that I was unable to walk a straight line. I do recall I was feeling unwell that day and had a migraine come on later in the day. He sent me to VRT and the therapist recommended I see a neurologist because she was unsure of the origin of the symptoms. Any eye exercises or assessments she did involving my eyes brought on migraine also.
Off to my GP I went for the referral to the neuro and an MRI. When my GP did the exam, I had the pain in my left leg as I described above, and she found weakness in my left side that day, along with balance issues and differing sensitivity in my legs. She referred me to a Neuro-Opthamologist as well. On my visit with him, he didn't find anything. He told me I was actually farsighted, although I have been corrected for nearsightedness always, and told me the double vision or ghosting I saw when the lights were out and also after my pupils were dilated was "blurry" vision. My GP had wanted him to do EPT but it was not done.
This past week, I visited the neurologist, whom I felt had his mind made up that this was "stress" within the first few minutes of seeing me. I don't deny that I have stress in my life. I think I do a decent job of managing and taking care of myself. I do not believe that it the cause of my symptoms. The neurologist did not do some of the tests my GP and PT did and did not order additional testing. My GP also ordered a blood panel in August and my VitD level was 32. I started taking supplements on my own after reading about the optimal levels and importance of VitD. The PT also stated there is a test available to determine if the origin of dizziness is vestibular or central, but that has not been done either. The brain and brain stem MRI was negative.
At this point I am fed up and frustrated. I have had numerous dr. visits in the past 2 months, used a lot of gas and time to attend and have nothing to show for it. I am not excessively worried that I have MS, I would just like to know so that I can start appropriate treatment to slow the progression if that is what it is. I am not one to run to the doctor for every little twitch and pain and I don't appreciate the neuro blowing this off as stress without additional testing or consideration.
Has anyone else had similar symptoms and experiences trying to get a diagnosis? Is it valid for me to be concerned about my symptoms being neurological/MS or am I overreacting? Any thoughts or feedback will be appreciated!
Comment