MS or not MS? That is the question.
Posted: Fri Mar 29, 2013 2:37 pm
Hi everyone, my name is Christie and I have a lot on my mind. I'm not ready to talk about this to anyone except my direct family at this point so I thought I would come here and make some friends.
I have an MRI set up for Monday and of course, am nervous about what may be found. It's Friday now so when you are scared and waiting that seems like forever. At least I will have Easter to distract me.
I'd like to share my story in hopes of finding those who can relate and to help me pass the time through this process of being diagnosed or not depending on what the future has in store for me.
My Background: I have never been a very healthy person. I have been sick my whole life due to a deficiency of immunoglobulin G. Any upper respiratory germ that comes my way I will catch. Not only catch but I am unable to fight it on my own. A simple cold turns into bronchitis almost every time and eventually would lead to pneumonia or death if I didn’t get antibiotics and/or steroids to help me along my way. Even with those it takes at least a month to recover from a cold and during the winter months that seems to be just in time to catch another one. I do get a break and am much healthier from about May or June through November. I mention this because I know MS is autoimmune but I wonder what having it might mean for someone like me with a weakened immune system?
In addition to IGG deficiency I have been diagnosed with a pituitary tumor which I am also getting rechecked on Monday as well as some stenosis in my cervical spine. They are thinking my spinal compression may be worse and causing my symptoms but are checking for MS as well as spinal chord compression. They already checked blood work for B12 deficiency and dehydration among other things and all that came back good.
My Symptoms: As you all know with MS it’s hard to tell what is an MS symptom or just something normal acting up. Well I have no idea if I even have MS but am putting together my symptoms like puzzle pieces and they seem to be creating an ugly picture.
The earliest thing I can trace back started about a year and a half ago. I started getting dry patches on my upper arms. Now I have them all down both arms, on my neck and chest kind of like eczema. I have also been loosing weight for the last year and a half. I’m down 35 lbs and am averaging about 3lbs a month that I am losing without really trying. Sometime last year I got an infection and was given Avalox (an antibiotic) I had to stop taking that because I was having numbness and tingling which was listed as a bad side effect. The numbness and tingling has never gone away in my ulnar nerve and causes problems with my pinky and ring finger feeling cold, numb and tingly.
About two months ago I went to urgent care after an episode of not being able to see. My eyes and my brain just didn’t seem to be coordinating. I would look at something and try to focus but couldn’t until eventually it got so bad I could barely see at all. By the time I got to the urgent care my symptoms seemed better and I passed an eye exam and was sent home with a referral to an Opthimalagist. I followed up with that appointment and he didn’t see anything wrong and said he thought it was just an eye migraine.
About two weeks after that I had to take my mother in for some oral surgery and had chest pains and a panic attack which landed me in the hospital. Again, nothing came of the tests and everything looked fine. The doctor told me she didn’t think it was anything except anxiety.
Shortly after that I got another cold that turned into an infection and was prescribed ceftin. I have taken it before but started experiencing tingling in my left leg. I called the doctor to see if it was a side effect and they said it was and I should stop taking it. That was about three weeks ago and the tingling never went away. It continued in my left leg and then went to my right as well after a couple days. It happens every time I rest my legs and especially when I lay down at night. It is like a feeling of vibration similar to when you use a leaf blower or trimmer and when it stops you still feel the vibration. It is only from my calves down and into my feet to my toes. It is every night and feels very annoying but at least it isn’t painful.
I just had to take my mom in for another oral surgery this Tuesday and again, I started freaking out. I don’t know what it is about that place or if it’s the stress but I started feeling off, a bit disconnected from my surroundings and dazed. I took half of an ativan pill thinking it was anxiety again. The longer I sat in the waiting room to take her home the worse it got. I felt like I was on auto pilot navigating what I know versus what I’m actually seeing. I was getting very nervous and of course, when you don’t feel well everything takes longer than it should. A 1 hr. surgery turned into 2 and a 10 minute recovery turned into 30. Finally I got her in the car and we were able to leave but had to stop at her pharmacy on the way home to get her meds. I almost didn’t make it. Driving was ridiculously hard. I just know that if someone did something stupid I wouldn’t have been able to react in time to avoid it. Not to mention I could have easily been the one making a stupid move. I had my daughter in the car and my mother strait out of anesthesia to worry about so I took a nice long break at the pharmacy before venturing the rest of the way to her house. The rest of the day seemed to improve slowly especially since I slept for an hour that afternoon. I broke down and told my mother that day about all the weird things that have been happening to me.
Since then I have repeated episodes of the same disconnected feeling I had that day but they are short, maybe 5 minutes each time a few times a day. I also have constant bouts of light headedness when I stand up from the couch. I’ll take a few steps, start getting light headed and be on autopilot for the next few steps. Then I will come to again and brace myself at it passes and realize I could have just collapsed and hit my head. I thank my lucky stars and move on. That happens about 10 times a day. Today, during one of my disconnected/ disoriented spells my left arm started to tingle and felt heavy. Again I was wondering if it’s in my head because of all the MS research I have been doing. I called my mom just so I wasn’t alone as it was happening. The whole episode came and went in about 10 minutes from disoriented to arm tingling to done. Other things are that my spine hurts in the middle of my back in one specific spot, my neck hurts which isn’t unusual for me since I have a compressed nerve there, and I am getting headaches every evening. BTW, what do MS headaches feel like?
So, I think that pretty much sums up EVERYTHING and if you are still reading I thank you! If anyone can relate or has any advice to give please feel free to write back. I am particularly interested in knowing the likely hood of these little weird things turning into something bigger like a full blown loss of function in a part of my body. I feel like I’m waiting for the other shoe to drop and get hit with something really bad at any moment. Did any of you experience short episodes like I do? Is that a precursor to something bigger, just normal MS behavior, or not MS like at all that I could be dealing with something totally different than MS?
Like I said, I have two days until my MRI and then who knows how many days until I know any results. I will be asking for a disc so I can come home and investigate my brain and spine on my own ;p
I have an MRI set up for Monday and of course, am nervous about what may be found. It's Friday now so when you are scared and waiting that seems like forever. At least I will have Easter to distract me.
I'd like to share my story in hopes of finding those who can relate and to help me pass the time through this process of being diagnosed or not depending on what the future has in store for me.
My Background: I have never been a very healthy person. I have been sick my whole life due to a deficiency of immunoglobulin G. Any upper respiratory germ that comes my way I will catch. Not only catch but I am unable to fight it on my own. A simple cold turns into bronchitis almost every time and eventually would lead to pneumonia or death if I didn’t get antibiotics and/or steroids to help me along my way. Even with those it takes at least a month to recover from a cold and during the winter months that seems to be just in time to catch another one. I do get a break and am much healthier from about May or June through November. I mention this because I know MS is autoimmune but I wonder what having it might mean for someone like me with a weakened immune system?
In addition to IGG deficiency I have been diagnosed with a pituitary tumor which I am also getting rechecked on Monday as well as some stenosis in my cervical spine. They are thinking my spinal compression may be worse and causing my symptoms but are checking for MS as well as spinal chord compression. They already checked blood work for B12 deficiency and dehydration among other things and all that came back good.
My Symptoms: As you all know with MS it’s hard to tell what is an MS symptom or just something normal acting up. Well I have no idea if I even have MS but am putting together my symptoms like puzzle pieces and they seem to be creating an ugly picture.
The earliest thing I can trace back started about a year and a half ago. I started getting dry patches on my upper arms. Now I have them all down both arms, on my neck and chest kind of like eczema. I have also been loosing weight for the last year and a half. I’m down 35 lbs and am averaging about 3lbs a month that I am losing without really trying. Sometime last year I got an infection and was given Avalox (an antibiotic) I had to stop taking that because I was having numbness and tingling which was listed as a bad side effect. The numbness and tingling has never gone away in my ulnar nerve and causes problems with my pinky and ring finger feeling cold, numb and tingly.
About two months ago I went to urgent care after an episode of not being able to see. My eyes and my brain just didn’t seem to be coordinating. I would look at something and try to focus but couldn’t until eventually it got so bad I could barely see at all. By the time I got to the urgent care my symptoms seemed better and I passed an eye exam and was sent home with a referral to an Opthimalagist. I followed up with that appointment and he didn’t see anything wrong and said he thought it was just an eye migraine.
About two weeks after that I had to take my mother in for some oral surgery and had chest pains and a panic attack which landed me in the hospital. Again, nothing came of the tests and everything looked fine. The doctor told me she didn’t think it was anything except anxiety.
Shortly after that I got another cold that turned into an infection and was prescribed ceftin. I have taken it before but started experiencing tingling in my left leg. I called the doctor to see if it was a side effect and they said it was and I should stop taking it. That was about three weeks ago and the tingling never went away. It continued in my left leg and then went to my right as well after a couple days. It happens every time I rest my legs and especially when I lay down at night. It is like a feeling of vibration similar to when you use a leaf blower or trimmer and when it stops you still feel the vibration. It is only from my calves down and into my feet to my toes. It is every night and feels very annoying but at least it isn’t painful.
I just had to take my mom in for another oral surgery this Tuesday and again, I started freaking out. I don’t know what it is about that place or if it’s the stress but I started feeling off, a bit disconnected from my surroundings and dazed. I took half of an ativan pill thinking it was anxiety again. The longer I sat in the waiting room to take her home the worse it got. I felt like I was on auto pilot navigating what I know versus what I’m actually seeing. I was getting very nervous and of course, when you don’t feel well everything takes longer than it should. A 1 hr. surgery turned into 2 and a 10 minute recovery turned into 30. Finally I got her in the car and we were able to leave but had to stop at her pharmacy on the way home to get her meds. I almost didn’t make it. Driving was ridiculously hard. I just know that if someone did something stupid I wouldn’t have been able to react in time to avoid it. Not to mention I could have easily been the one making a stupid move. I had my daughter in the car and my mother strait out of anesthesia to worry about so I took a nice long break at the pharmacy before venturing the rest of the way to her house. The rest of the day seemed to improve slowly especially since I slept for an hour that afternoon. I broke down and told my mother that day about all the weird things that have been happening to me.
Since then I have repeated episodes of the same disconnected feeling I had that day but they are short, maybe 5 minutes each time a few times a day. I also have constant bouts of light headedness when I stand up from the couch. I’ll take a few steps, start getting light headed and be on autopilot for the next few steps. Then I will come to again and brace myself at it passes and realize I could have just collapsed and hit my head. I thank my lucky stars and move on. That happens about 10 times a day. Today, during one of my disconnected/ disoriented spells my left arm started to tingle and felt heavy. Again I was wondering if it’s in my head because of all the MS research I have been doing. I called my mom just so I wasn’t alone as it was happening. The whole episode came and went in about 10 minutes from disoriented to arm tingling to done. Other things are that my spine hurts in the middle of my back in one specific spot, my neck hurts which isn’t unusual for me since I have a compressed nerve there, and I am getting headaches every evening. BTW, what do MS headaches feel like?
So, I think that pretty much sums up EVERYTHING and if you are still reading I thank you! If anyone can relate or has any advice to give please feel free to write back. I am particularly interested in knowing the likely hood of these little weird things turning into something bigger like a full blown loss of function in a part of my body. I feel like I’m waiting for the other shoe to drop and get hit with something really bad at any moment. Did any of you experience short episodes like I do? Is that a precursor to something bigger, just normal MS behavior, or not MS like at all that I could be dealing with something totally different than MS?
Like I said, I have two days until my MRI and then who knows how many days until I know any results. I will be asking for a disc so I can come home and investigate my brain and spine on my own ;p