In need of advice and second opinions
Hi everyone
,
I'm not quite sure where to start. Before I do, though, I should point out that my mind is going a mile a minute and I'm having difficulty keeping one thought at a time. Not sure if it's due to whatever is going on with me health wise, or the stress in my life. Probably both. Well here it goes...
I've been in limbo for a few years now. Shortly after I turned 17 I went that whole year dealing with chronic bladder/urinary tract infections. I probably went to the clinic once every 1-2 months that year but was only treated twice. I started pounding back lots of water and cranberry juice and eventually cured it myself.
The year I was 18 I was very healthy and active. Not a worry in the world. I was very busy, constantly just go-go-go from 5-6am to 12am I was always busy doing something. Several people asked me "don't you ever, you know...sit?". I loved it. I had an active job, a big garden to work in and I always had time for my friends.
Around my 19th birthday, maybe just shortly after, I started experiencing a lot of inflammation in my hands and legs. That scared me because of all my bladder problems, I thought maybe the chronic infection caused something. Or maybe I'm retaining too much water. Or maybe it's poor diet--too much salt. After much blood work, urine tests, ultrasounds, and a barium swallow...all they could find is that I had a small cyst on my left ovary, which obviously was not the cause of my symptoms. So I started eating as healthy as possible, cut out salty and greasy foods. No more swelling in my hands but I'd still have issues with my legs feeling very heavy and weak. Like I was walking through mud.
For probably 6 months, with that, I was experiencing a lot of fatigue, complete weakness, muscle spasms (mostly in my legs), problems with coordination. I eventually was sent to see an allergy specialist who instead turned out to be a heart specialist who did the allergy testing. He was able to conclude that I had allergies to pet dander and house dust, and that these could attribute to fatigue but definitely not any of the other issues I was having. I was then referred to a general specialist.
In the time I waited (a year!) all my symptoms became worse and more frequent (almost daily. Eventually I started to notice some new, and alarming symptoms. One day I was working I became very weak and shaky and could hardly walk. I was experiencing a sharp shooting pain in my right leg and eventually got sent home. This sharp pains became more frequent. My legs went from just feeling heavy to at times going partially numb. The numbness and tingly sensation started happening just about everywhere on my body (although not everywhere at once). It was usually just legs, hands, and feet. Eventually I started to experience it on my back and face, as well as other strange sensations like burning pains, sharp stabbing pains, prickly pains almost like someone rubbing sandpaper on me, and twitching.
Now over the last or 9 months (I should add I lost a very dear friend last November so that is probably why I have been in such terrible shape lately) I have woken up every single morning feeling hungover. My head is spinning, sometimes I actually have vertigo, vision is blurred, I feel like I weight 1000 and it takes me at least a half hour just to sit up. My legs shake every single time I walk up or down stairs (when I'm used to running up stairs no problem). Tremors are terrible especially in my hands and legs. My boyfriend says I jerk and shake in my sleep all the time when I used to be a very quiet, peaceful sleeper.
I get tearing and stretching pains in my legs and in my sides. 3 times this year I have had this crushing feeling in my rib cage and upper spine. Like my ribs are shattering. It is the most excruciating and uncomfortable feeling ever. I can hardly breath when this happens and theres nothing I can do to get comfortable. I stumble and trip easily, I slur my words, I lose thoughts. I'm 21 and feel like I'm 80 years old. My nickname is "grandma" because of how I walk and my very boring life lol.
Around that time a friend of mine was discussing my symptoms with a friend of hers who is a nurse and mentioned Multiple Sclerosis. When it got to me I brushed in off, there was no way I had a chronic disease. Maybe I just had poor circulation combined with my allergies that could just be my issue. Anyone I ever heard of with MS was in a wheel chair so I never thought of it as a possibility. But then I realized I really didn't know anything about it. Doctors and nurses had said things like Lupus, Rheumatoid Arthritis, Fibromyalgia, pinched nerves and it goes on...
So I started doing some research and realized that it felt right. "This makes so much sense" and the more I started thinking about I realized a lot of my symptoms happened when I was younger. Certain things that I didn't realize had anything to do with what was making me "ill" now, because thye have been going on for so long I thought it was natural. For instance, when I was ten I started getting these awful "headaches" in my right eye. A sharp, throbbing pain that would last a couple hours. These were as frequent for me as a migraine was for my mother so I never thought much of it just figured "these are my headaches" eventually started having a hard time reading cause the lines would go double and I couldn't focus.
Seen an optometrist twice who told me my right eye was weaker then the left and I probably just needed reading glasses. He gave me the "strongest prescription" to try. I sat and read a magazine for about 20 minutes. No difference. Made it worse actually. He said "well then I dont know what to do for you" and that was that. Vision and my writing became worse and worse but I told myself I was just tired and my writing was just gettingsloppy no big deal. I suffered from constant dizzy spells that my doc at the time said was a B12 complex. The B12 actually did help though. Severe insomnia (to this day, actually). My arms were always weak so I didnt participate in PE cause I thought I was a "weakling".
I remember twice having the most intense muscle spasm in my right leg throughout my early teens but doc said "potassium". Eventually those things became natural and I didn't worry about them. Kinda weird but since I was a kid I had what I called "butt cramps" weird spasm in my colon. I thought this happened to everyone...so I've had many weird looks because I had no problem announcing it. I also would get itches under my skin that I just couldnt scratch whiich I also thought happens to everyone all the time but apparently it does not.
Anyway, one night in May of this year,my legs, right arm, and face went numb and I went to the emergency room. That specialist just happened to be in there that night so he spent 15 minutes of his precious time with me. He came to the assumption that I was probably having bassilar type migraines. He sent me in for a CT scan and had me electrolytes tested. All coming back normal. He seemed more concerned about the dry patch on my facethen my other symptoms. He said he wanted me to see a neurologist but I don't think he referred me. So while having a spastic attack in my legs I seen my family doc againwho sent the referral, I got a call within a couple weeks.
I seen her yesterday. She didnt run any tests because we don't actually have the right equipment here. She tested my reflexes, some were off but not all of them. Did some visual and balance tests, totally failed those. Discussed with her my symptoms as she covered the last specialists write ups. She told me "I will never sit with a patient and say what I think it could be. I need some sort of proof." She told me the numbness I get inmy face and gums, how I had pins and needles run down my left side, the visual problems and the occasionally vertigo could possibly be due to migraine phenomena. The rest of my symptoms, are definitely not due to migraine.
She practically mocked the idea. My other symptoms were bothersome to her and she wants me in for an MRI of my brain and the upper part of my spinal chord. Unfortunately, we dont have an MRI machine here so I've been referred to the hospital in a bigger city about 6 or 7 hours away from here. So theres some more waiting. Wait for the call, go there, then wait to see the neuro again to go over what they found. She prescribed me with a drug called Topiramate. It is usually given to epileptics or people with chronic migraine. She said it should help with my nerve pain and hopefully the dizziness and visual problems. She was very nice and told me if anything drastic happens to call her office as soon as possible.
Today I woke up and every muscle in my body was so stiff and sore for no reason. Could hardly get through my day. Legs weak and shaky as always. Got me thinking more of what could be wrong and the possibility of it being MS and how am I supposed to deal with it all. Decided to come on here, tell me story, and hopefully get some advice. I hope for the most part you all can understand what I'm saying and that I'm not too over the place! Wow this is painfully long,I should stop rambling now, take my pill and go to bed!
Sweet dreams everyone,
I truly hope you are all feeling well. Thanks for your time and patience!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
,I'm not quite sure where to start. Before I do, though, I should point out that my mind is going a mile a minute and I'm having difficulty keeping one thought at a time. Not sure if it's due to whatever is going on with me health wise, or the stress in my life. Probably both. Well here it goes...
I've been in limbo for a few years now. Shortly after I turned 17 I went that whole year dealing with chronic bladder/urinary tract infections. I probably went to the clinic once every 1-2 months that year but was only treated twice. I started pounding back lots of water and cranberry juice and eventually cured it myself.
The year I was 18 I was very healthy and active. Not a worry in the world. I was very busy, constantly just go-go-go from 5-6am to 12am I was always busy doing something. Several people asked me "don't you ever, you know...sit?". I loved it. I had an active job, a big garden to work in and I always had time for my friends.
Around my 19th birthday, maybe just shortly after, I started experiencing a lot of inflammation in my hands and legs. That scared me because of all my bladder problems, I thought maybe the chronic infection caused something. Or maybe I'm retaining too much water. Or maybe it's poor diet--too much salt. After much blood work, urine tests, ultrasounds, and a barium swallow...all they could find is that I had a small cyst on my left ovary, which obviously was not the cause of my symptoms. So I started eating as healthy as possible, cut out salty and greasy foods. No more swelling in my hands but I'd still have issues with my legs feeling very heavy and weak. Like I was walking through mud.
For probably 6 months, with that, I was experiencing a lot of fatigue, complete weakness, muscle spasms (mostly in my legs), problems with coordination. I eventually was sent to see an allergy specialist who instead turned out to be a heart specialist who did the allergy testing. He was able to conclude that I had allergies to pet dander and house dust, and that these could attribute to fatigue but definitely not any of the other issues I was having. I was then referred to a general specialist.
In the time I waited (a year!) all my symptoms became worse and more frequent (almost daily. Eventually I started to notice some new, and alarming symptoms. One day I was working I became very weak and shaky and could hardly walk. I was experiencing a sharp shooting pain in my right leg and eventually got sent home. This sharp pains became more frequent. My legs went from just feeling heavy to at times going partially numb. The numbness and tingly sensation started happening just about everywhere on my body (although not everywhere at once). It was usually just legs, hands, and feet. Eventually I started to experience it on my back and face, as well as other strange sensations like burning pains, sharp stabbing pains, prickly pains almost like someone rubbing sandpaper on me, and twitching.
Now over the last or 9 months (I should add I lost a very dear friend last November so that is probably why I have been in such terrible shape lately) I have woken up every single morning feeling hungover. My head is spinning, sometimes I actually have vertigo, vision is blurred, I feel like I weight 1000 and it takes me at least a half hour just to sit up. My legs shake every single time I walk up or down stairs (when I'm used to running up stairs no problem). Tremors are terrible especially in my hands and legs. My boyfriend says I jerk and shake in my sleep all the time when I used to be a very quiet, peaceful sleeper.
I get tearing and stretching pains in my legs and in my sides. 3 times this year I have had this crushing feeling in my rib cage and upper spine. Like my ribs are shattering. It is the most excruciating and uncomfortable feeling ever. I can hardly breath when this happens and theres nothing I can do to get comfortable. I stumble and trip easily, I slur my words, I lose thoughts. I'm 21 and feel like I'm 80 years old. My nickname is "grandma" because of how I walk and my very boring life lol.
Around that time a friend of mine was discussing my symptoms with a friend of hers who is a nurse and mentioned Multiple Sclerosis. When it got to me I brushed in off, there was no way I had a chronic disease. Maybe I just had poor circulation combined with my allergies that could just be my issue. Anyone I ever heard of with MS was in a wheel chair so I never thought of it as a possibility. But then I realized I really didn't know anything about it. Doctors and nurses had said things like Lupus, Rheumatoid Arthritis, Fibromyalgia, pinched nerves and it goes on...
So I started doing some research and realized that it felt right. "This makes so much sense" and the more I started thinking about I realized a lot of my symptoms happened when I was younger. Certain things that I didn't realize had anything to do with what was making me "ill" now, because thye have been going on for so long I thought it was natural. For instance, when I was ten I started getting these awful "headaches" in my right eye. A sharp, throbbing pain that would last a couple hours. These were as frequent for me as a migraine was for my mother so I never thought much of it just figured "these are my headaches" eventually started having a hard time reading cause the lines would go double and I couldn't focus.
Seen an optometrist twice who told me my right eye was weaker then the left and I probably just needed reading glasses. He gave me the "strongest prescription" to try. I sat and read a magazine for about 20 minutes. No difference. Made it worse actually. He said "well then I dont know what to do for you" and that was that. Vision and my writing became worse and worse but I told myself I was just tired and my writing was just gettingsloppy no big deal. I suffered from constant dizzy spells that my doc at the time said was a B12 complex. The B12 actually did help though. Severe insomnia (to this day, actually). My arms were always weak so I didnt participate in PE cause I thought I was a "weakling".
I remember twice having the most intense muscle spasm in my right leg throughout my early teens but doc said "potassium". Eventually those things became natural and I didn't worry about them. Kinda weird but since I was a kid I had what I called "butt cramps" weird spasm in my colon. I thought this happened to everyone...so I've had many weird looks because I had no problem announcing it. I also would get itches under my skin that I just couldnt scratch whiich I also thought happens to everyone all the time but apparently it does not.
Anyway, one night in May of this year,my legs, right arm, and face went numb and I went to the emergency room. That specialist just happened to be in there that night so he spent 15 minutes of his precious time with me. He came to the assumption that I was probably having bassilar type migraines. He sent me in for a CT scan and had me electrolytes tested. All coming back normal. He seemed more concerned about the dry patch on my facethen my other symptoms. He said he wanted me to see a neurologist but I don't think he referred me. So while having a spastic attack in my legs I seen my family doc againwho sent the referral, I got a call within a couple weeks.
I seen her yesterday. She didnt run any tests because we don't actually have the right equipment here. She tested my reflexes, some were off but not all of them. Did some visual and balance tests, totally failed those. Discussed with her my symptoms as she covered the last specialists write ups. She told me "I will never sit with a patient and say what I think it could be. I need some sort of proof." She told me the numbness I get inmy face and gums, how I had pins and needles run down my left side, the visual problems and the occasionally vertigo could possibly be due to migraine phenomena. The rest of my symptoms, are definitely not due to migraine.
She practically mocked the idea. My other symptoms were bothersome to her and she wants me in for an MRI of my brain and the upper part of my spinal chord. Unfortunately, we dont have an MRI machine here so I've been referred to the hospital in a bigger city about 6 or 7 hours away from here. So theres some more waiting. Wait for the call, go there, then wait to see the neuro again to go over what they found. She prescribed me with a drug called Topiramate. It is usually given to epileptics or people with chronic migraine. She said it should help with my nerve pain and hopefully the dizziness and visual problems. She was very nice and told me if anything drastic happens to call her office as soon as possible.
Today I woke up and every muscle in my body was so stiff and sore for no reason. Could hardly get through my day. Legs weak and shaky as always. Got me thinking more of what could be wrong and the possibility of it being MS and how am I supposed to deal with it all. Decided to come on here, tell me story, and hopefully get some advice. I hope for the most part you all can understand what I'm saying and that I'm not too over the place! Wow this is painfully long,I should stop rambling now, take my pill and go to bed!
Sweet dreams everyone,
I truly hope you are all feeling well. Thanks for your time and patience!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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