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20 year old male with variety of symptoms... possible early MS or neuro disorder??
Hey guys im hoping to get some help or advice..
Back in 2011/2012, I had a few concussions playing football. In April 2012 in the last game I played I had another knock to the head but didn't seem to have the typical concussion symptoms (headache, nausea, confusion but I did feel briefly dizzy) so I resumed playing in the match. Some 3 or 4 hours later after watching the next match I was in the car with a mate on the way home. I had an extremely weird episode where I noticed the toes on my right foot were numb. My right hand/fingers started go numb and stopped at my wrist. I realized I couldn't see clearly out of my right eye because I couldn't really read the txt msgs on my phone. Right side of my mouth went numb and I started to speak incoherently (words weren't coming out right and I was jumbling up my sentences). Next couple days I visited the GP and he suspected possible bleeding on the brain. I had a CT scan but all came back clear and was just diagnosed with another concussion.
Over the next few months I developed a few weird symptoms such as sharp/stabbing pains in my head and random numbness and pins and needles in my feet. I've always had regular headaches since I was a little kid but these seemed to be getting worse. I started to get muscle contractions and the vision in my right eye was always off. I also noticed my pupils were different sizes. I saw a few different docs and got referred to see a neurologist. The neurologist ordered an MRI of my brain and neck also I think and I'm pretty sure with contrast. He said all came back clear and normal for my age and diagnosed me migraines even though I barely had a physical migraine with extreme pain.
Fast forward 8-12 months and in July 2013 of still getting most of these symptoms regularly, I went on a business trip for an annual conference to QLD. In QLD I started to feel really off balance. Its an extremely odd sensation and I've been able to pinpoint it as 'disequilibrium'. It is a similar sensation to walking on a boat or walking on a mattress or trampoline. It feels as though the ground is moving under my feet. Like the ground is rising and sinking. Thought it was from the plane or maybe elevator as I stayed in a room on the 17th floor. Saw several docs but put down to stress or high blood pressure. (No history). In the last 18 months the disequilibrium comes and goes.
A month later I started to get really weird pain in my head. It was on top of my head and was tender to the touch. It was bad particularly in the morning and usually cleared by mid arvo. It worsened whenever I would bend over or cough or sneeze. This only lasted for 2 weeks how ever and stopped.
Fast forward another 16 months of these symptoms coming and going and it is December 2014.. I'm not sure why but it seems to have been getting the worse the past several weeks out of no where... still getting a variety of symptoms including blurred vision, muscle contractions, sharp/stabbing pains in head, pressure in head an general pressure (not constant)... The thing that has been worse lately is the disequilibrium. It really puts me off and disturbs me at work. Id like to just stay home but I cant afford the time off. It has been with me for almost the last 4 weeks, every day. I've also had the morning head pain everyday for about 3-4 months. I've recently developed another symptom similar to the number/pins and needles. Its a sort of tingling sensation and also a sort of creeping feeling (the type that you get when you lay on your arm and it starts to go numb and you feel it buzz or vibrate). I've also been getting a burning sensation in my left calf a couple of times a day at work as though someone was holding a warm/hot rod of metal to leg. I've been getting the tingling sensation randomly on my arms and legs and even face and the creeping sort of buzzing/numb sensation on the back of my neck and my left foot. I've got it right as I'm typing this and its been worse the last day. I also have a weird sort of pressure/tingling on the top middle of my head which has been there almost constantly the last few weeks. I have seen a new doctor and gone over most of my symptoms. He has ordered a blood test which came back fine and I started taking 5mg of amitriptyline which I stopped several days ago because it wasn't helping (doc said I could if I wanted). I'm on the public system to see a neurologist but I'm on the non urgent waiting list. I'm going to go see the doc ASAP and ask for a referral to see a private neurologist. I have an appointment to see an ENT specialist to rule out balance issues in inner ear but that's not until late Jan.
At first I thought I had a brain tumor but now I've found a lot of my symptoms seem to be common in MS and maybe I just have a mild case or its just developing? I feel like I've been dealing with this for so long and still don't have a real answer. I'm paranoid its MS and I just want to feel normal. I'm not sure why the neurologist in 2012 wouldn't have picked it up then but is it possible it could have come on since then? Does it have something to do with the concussions a couple of years ago? I try really hard to stay fit and healthy. I eat clean and always train at the gym. I never do drugs and haven't had any alcohol in almost 3 years. I'm building my first house with my girlfriend and I'm worried I'm going to end up disabled or with a permanent illness and not be able to live a proper life.
I'm sorry for the massive life story but I needed to get that off my chest as I feel I never get a chance to tell the doc the full story. I'm hoping someone has some sort of knowledge in this area or could just offer some advice. Id like to say I want to know if there's anyone out there with these same circumstances/symptoms but I don't want to wish it upon anyone. Hoping someone can help, thanks guys!
Back in 2011/2012, I had a few concussions playing football. In April 2012 in the last game I played I had another knock to the head but didn't seem to have the typical concussion symptoms (headache, nausea, confusion but I did feel briefly dizzy) so I resumed playing in the match. Some 3 or 4 hours later after watching the next match I was in the car with a mate on the way home. I had an extremely weird episode where I noticed the toes on my right foot were numb. My right hand/fingers started go numb and stopped at my wrist. I realized I couldn't see clearly out of my right eye because I couldn't really read the txt msgs on my phone. Right side of my mouth went numb and I started to speak incoherently (words weren't coming out right and I was jumbling up my sentences). Next couple days I visited the GP and he suspected possible bleeding on the brain. I had a CT scan but all came back clear and was just diagnosed with another concussion.
Over the next few months I developed a few weird symptoms such as sharp/stabbing pains in my head and random numbness and pins and needles in my feet. I've always had regular headaches since I was a little kid but these seemed to be getting worse. I started to get muscle contractions and the vision in my right eye was always off. I also noticed my pupils were different sizes. I saw a few different docs and got referred to see a neurologist. The neurologist ordered an MRI of my brain and neck also I think and I'm pretty sure with contrast. He said all came back clear and normal for my age and diagnosed me migraines even though I barely had a physical migraine with extreme pain.
Fast forward 8-12 months and in July 2013 of still getting most of these symptoms regularly, I went on a business trip for an annual conference to QLD. In QLD I started to feel really off balance. Its an extremely odd sensation and I've been able to pinpoint it as 'disequilibrium'. It is a similar sensation to walking on a boat or walking on a mattress or trampoline. It feels as though the ground is moving under my feet. Like the ground is rising and sinking. Thought it was from the plane or maybe elevator as I stayed in a room on the 17th floor. Saw several docs but put down to stress or high blood pressure. (No history). In the last 18 months the disequilibrium comes and goes.
A month later I started to get really weird pain in my head. It was on top of my head and was tender to the touch. It was bad particularly in the morning and usually cleared by mid arvo. It worsened whenever I would bend over or cough or sneeze. This only lasted for 2 weeks how ever and stopped.
Fast forward another 16 months of these symptoms coming and going and it is December 2014.. I'm not sure why but it seems to have been getting the worse the past several weeks out of no where... still getting a variety of symptoms including blurred vision, muscle contractions, sharp/stabbing pains in head, pressure in head an general pressure (not constant)... The thing that has been worse lately is the disequilibrium. It really puts me off and disturbs me at work. Id like to just stay home but I cant afford the time off. It has been with me for almost the last 4 weeks, every day. I've also had the morning head pain everyday for about 3-4 months. I've recently developed another symptom similar to the number/pins and needles. Its a sort of tingling sensation and also a sort of creeping feeling (the type that you get when you lay on your arm and it starts to go numb and you feel it buzz or vibrate). I've also been getting a burning sensation in my left calf a couple of times a day at work as though someone was holding a warm/hot rod of metal to leg. I've been getting the tingling sensation randomly on my arms and legs and even face and the creeping sort of buzzing/numb sensation on the back of my neck and my left foot. I've got it right as I'm typing this and its been worse the last day. I also have a weird sort of pressure/tingling on the top middle of my head which has been there almost constantly the last few weeks. I have seen a new doctor and gone over most of my symptoms. He has ordered a blood test which came back fine and I started taking 5mg of amitriptyline which I stopped several days ago because it wasn't helping (doc said I could if I wanted). I'm on the public system to see a neurologist but I'm on the non urgent waiting list. I'm going to go see the doc ASAP and ask for a referral to see a private neurologist. I have an appointment to see an ENT specialist to rule out balance issues in inner ear but that's not until late Jan.
At first I thought I had a brain tumor but now I've found a lot of my symptoms seem to be common in MS and maybe I just have a mild case or its just developing? I feel like I've been dealing with this for so long and still don't have a real answer. I'm paranoid its MS and I just want to feel normal. I'm not sure why the neurologist in 2012 wouldn't have picked it up then but is it possible it could have come on since then? Does it have something to do with the concussions a couple of years ago? I try really hard to stay fit and healthy. I eat clean and always train at the gym. I never do drugs and haven't had any alcohol in almost 3 years. I'm building my first house with my girlfriend and I'm worried I'm going to end up disabled or with a permanent illness and not be able to live a proper life.
I'm sorry for the massive life story but I needed to get that off my chest as I feel I never get a chance to tell the doc the full story. I'm hoping someone has some sort of knowledge in this area or could just offer some advice. Id like to say I want to know if there's anyone out there with these same circumstances/symptoms but I don't want to wish it upon anyone. Hoping someone can help, thanks guys!
Thank you for your comment! That actually helps a lot.
Ive read somewhere that trauma issues dont tend to be degenerative so why do I feel like things are getting worse? It seems as though you're having the same issue.
I've seen multiple docs over the past 2 and a half years. At least 7 or 8 and I get the same sort of vibe from most of them. They tell me if there's been no significant discovery then my problems are in my head... ive been seeing a new doctor lately and hes been quite good. Seems to get a little irritated and keeps telling me try not to worry but hes atleast putting steps in place to determine what it is...
I havent really had any major issues with moods or anything like that out of the blue. I still seem to be in control of that but obviously this whole situation gives me anxiety. Im only just starting out my life and I want to be able to enjoy it...
Thank you again so much for your comment, it really means a lot to me!
Ive read somewhere that trauma issues dont tend to be degenerative so why do I feel like things are getting worse? It seems as though you're having the same issue.
I've seen multiple docs over the past 2 and a half years. At least 7 or 8 and I get the same sort of vibe from most of them. They tell me if there's been no significant discovery then my problems are in my head... ive been seeing a new doctor lately and hes been quite good. Seems to get a little irritated and keeps telling me try not to worry but hes atleast putting steps in place to determine what it is...
I havent really had any major issues with moods or anything like that out of the blue. I still seem to be in control of that but obviously this whole situation gives me anxiety. Im only just starting out my life and I want to be able to enjoy it...
Thank you again so much for your comment, it really means a lot to me!
Sorry to hear about all the trouble you're having. I hope it gets better.
I had a lot of issues with chronic whiplash syndrome. For years it was just lots of neck and jaw pain. But over the last couple months a lot of crazy neurological stuff started happening. Facial numbness, issues with balance, blurry vision, pins and needles in the extremities while trying to stretch etc...
But the worst part was the mental stuff. It affected my mood and made me a different person, tough to be around, always losing my temper. Then when the neurological stuff got going the last couple months the mental and emotional side went nuts. I started getting really scared for no reason and just feeling awful.
I think I was on the verge of having a seizure, constantly. I ended up getting Ativan in the ER and that has helped me so much. I feel so much better now.
If there's any sort of mental/mood side to your symptoms, I'd at least try an anti-convulsant like Ativan. Just to see, it was like a magic pill for me. Although our cases and symptoms are not exactly the same.
I had a ton of scans, MRIs, CT scans, none of them really showed anything. I think there might be something small in what's called the craniocervical joint complex (basically right where the spine meets the skull) like some scar tissue or some slight damage. Even small trauma there can totally destroy your life and it's tough for them to see it with normal scans.
I'd try the meds first, just keep going until you find one that helps, but make sure you cover all the bases as far as what they address and definitely try something like Ativan.
If the meds don't help and the scans you're trying don't see anything, then I'd probably try to get more advanced scans like a fMRI or Brain Electric Tomography. Could be something small they haven't seen yet.
Definitely do a ton of research into post-concussion treatments, alternatives, mainstream and everything in between. Be prepared to try anything that's sane, it will make you feel better at least if you're always working on it and not just giving up.
And always show up for your doctor's appointments prepared with your research. Don't let them treat you like a cookie cutter patient. Do your homework and stand up for yourself, don't be afraid to ask for what you think you need.
There's a lot of docs out there who are just punching the clock and don't ever go an extra mile. So if you have a complicated and chronic condition that's resisting treatment then you need to find somebody who's going to at least care about you and/or be interested in solving the puzzle. You should be able to tell by how they respond to your questions and research. If they act irritated, like they just want you to shut up, then drop them and get somebody else.
Good luck
I had a lot of issues with chronic whiplash syndrome. For years it was just lots of neck and jaw pain. But over the last couple months a lot of crazy neurological stuff started happening. Facial numbness, issues with balance, blurry vision, pins and needles in the extremities while trying to stretch etc...
But the worst part was the mental stuff. It affected my mood and made me a different person, tough to be around, always losing my temper. Then when the neurological stuff got going the last couple months the mental and emotional side went nuts. I started getting really scared for no reason and just feeling awful.
I think I was on the verge of having a seizure, constantly. I ended up getting Ativan in the ER and that has helped me so much. I feel so much better now.
If there's any sort of mental/mood side to your symptoms, I'd at least try an anti-convulsant like Ativan. Just to see, it was like a magic pill for me. Although our cases and symptoms are not exactly the same.
I had a ton of scans, MRIs, CT scans, none of them really showed anything. I think there might be something small in what's called the craniocervical joint complex (basically right where the spine meets the skull) like some scar tissue or some slight damage. Even small trauma there can totally destroy your life and it's tough for them to see it with normal scans.
I'd try the meds first, just keep going until you find one that helps, but make sure you cover all the bases as far as what they address and definitely try something like Ativan.
If the meds don't help and the scans you're trying don't see anything, then I'd probably try to get more advanced scans like a fMRI or Brain Electric Tomography. Could be something small they haven't seen yet.
Definitely do a ton of research into post-concussion treatments, alternatives, mainstream and everything in between. Be prepared to try anything that's sane, it will make you feel better at least if you're always working on it and not just giving up.
And always show up for your doctor's appointments prepared with your research. Don't let them treat you like a cookie cutter patient. Do your homework and stand up for yourself, don't be afraid to ask for what you think you need.
There's a lot of docs out there who are just punching the clock and don't ever go an extra mile. So if you have a complicated and chronic condition that's resisting treatment then you need to find somebody who's going to at least care about you and/or be interested in solving the puzzle. You should be able to tell by how they respond to your questions and research. If they act irritated, like they just want you to shut up, then drop them and get somebody else.
Good luck
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