Can anyone relate?
Hi there....I'm new to this forum and this is my very very first post! I'm starting an interesting journey and was looking for support or even better, similar stories. This is long so pull up a chair and a cup of something 
It all started around 2010 when I was living in Florida. I would often smell cigarette smoke. I don't smoke nor does anyone in my house. It would happen anywhere. I attributed this to living on a somewhat busy road and could smell pedestrians smoking as they passed by. Fast forward to 2013...I moved to VA and continued to experience the same smell. Thinking this was weird, I went to the Dr. I was eventually referred to an ENT who requested an MRI (can't recall if it was with or without contrast) and an EEG to rule out seizures. The EEG was normal (phew) but she said I had "spots on my scan indicative of vasculitis"...interesting right? So here I sit waiting for my neuro appt in 2 weeks.
My fiance and I have been discussing and researching and I've been making a list of my symptoms. I wanted to share them because they don't really mesh with all the CNS vasculitis symptoms. Bear with me...
- toes go numb (not all toes...it's usually one at a time and lasts for 10-15 minutes...this has been going on for possibly 10 years...I originally attributed this to the shoes but it even happens in flip flops)
- numb skin (this is a weird one and hard to explain...this only happens for a day or so and it's only in specific locations...the last time was on the back of my left calf...I could feel I was touching the skin but it felt numb which was super weird...I can recall the first instance of this back in 2009)
- weakness and joint pain in the right hand only (I am a right hander and my left is unaffected...I've had some issues with strength and joint pain in only two of the fingers over the last month...the weakness has been progressive for a few months now but the pain is new in the last few weeks)
- blurry vision (i got my first set of glasses in 1998 and lasik in 2002...perfect vision since however my vision has slightly worsened in the last few years. I now wear glasses again but only some days. Somedays I see like a champ and other days I rely heavily on my glasses)
- numb and tingly hands (this has been happening over the last 2 years and it's very random...my hands will go numb and tingle...when this happens I can't open them...no strength. It'll last for a few minutes and then back to normal)
- clumsiness (I've always thought I was just a clumsy person...if it's there, I will run into it. But I can see myself heading towards something and I know I need to veer but my body doesn't do what the brain is telling it. I've also just been standing there and fell to the ground. That's more rare but has happened. I often trip over nothing at all.)
- Forgetfulness (I'm a smart person and am very articulate. I can recall a conversation like you wouldn't believe but over the last year I've found myself forgetting words. I'll be talking to someone and ask them about a specific thing or item and cannot for the life of me recall the word so I end of describing it...very frsutrating. This has happened randomly over the last few years but has increased immensley over the last 3-6 months.)
- Moodiness (Man you'd think I was menstrating 24/7...I go from happy to I'm gonna kill someone in a matter of seconds...for no reason at all! It's totally unprevoked and totally not like me. Just the other day I was looking at graham crackers andstarted crying in the aisle. No clue why!)
- Fatigue (This started about 8 months ago but has increased in the last 2-3 months. I cannot get enough sleep. I used to function just fine on 6 hours...not I need 8 to even crawl out of bed and am still exhausted all day. I'm not falling asleep at my desk or anything it's just I'm wasted...I have nothing to give. Even 12 hours of sleep isn't enough. I wake at 6 and am ready for bed by 8 at night.)
- Lightheadedness/ Dizzy (I used to attribute this to low blood pressure. Although the Docs will never tell me it's "low" I register in the 105/75 range. Sometimes it'll drop to 90/65 but I'm usually right around 100. I get dizzy upon standing and sometimes my vision goes black even though my eyes are open. This also happens when I'm just standing or walking around...just a quick bout of lightheadedness and dizziness and then it passes.)
- Constipation (This has never been an issue for me...but I find myself constipated at least monthly over the last year and at least weekly over the last month. I eat plenty of fiber.)
- Spasms? (I get these weird electrical shocks through my body that cause small twitches. They don't last long and they come/go...weird).
- Stabbing pains (A few months back I had this stabbing pain in my right temple. I have a pretty high tolerance for pain but it brought me to my knees. It happened continually over the course of a day and was gone. I get them in my legs sometimes. During the night a few nights back, I'd swear someone was stabbing my in the left calf with a crocdile dundee knife!)
- Nausea (I get these waves of nausea that come and go for unknown reasons. This is new over the last month or so.)
- Headaches (I used to be a migraine sufferer in my early 20s but I stopped having them around 26 yo. I had one three or so years ago but none since. Over the last month though I've had a daily dull headache that'll come and go. I woke with one this morning and it was gone after my shower but now it's back.)
- Dropping Things (In the past couple of months...when the hand weaknes started, I've noticed I drop a lot of things. For instance, my son handed me something yesterday. I felt it, I clearly had a hold of it but when he let go, I dropped it. That's happened several times.)
- Fog (Sometimes I feel like a zombie...just walking around with this fog in my head...can't think, can't function, can't do a thing! Very annoying!)
- Tired Arms/Legs (This sort of goes with the fatigue...my arms have been getting very tired. I've noticed over the last several weeks I've had to take several breaks when blow drying my hair. I have to stop, drop my arms, wait for them to stop burning, and start again. This is something I've felt before but it normally follows a heavy arm day in the gym but that hasn't been the case. Stairs...I used to be able to climb them and I'm in pretty darn good shape but I find that my quads are burning like you wouldn't believe in a matter of seconds when doing any type of muscle exercise on my legs.)
- Heat Issues (If I work out in the heat, I swear I'm going to die! I get so overheated and I sweat excessively for a girl...gross! I've also experienceed hot flashes over the last 10 years or so...just a quick flash of heat, causes a bitif sweat and then gone.)
- Chest Tightness (This has happened over the last few years but it'll only last maybe 5-30 minutes...nothing like days. I have to take some deep breaths because I feel like my chest is tight.)
I know that's a lot! Sorry but thanks for reading. I'm a 34 year old female with no family history of MS. I'm just concerned over the MRI and the symptoms I've had and am having. The dizzy/lightheadedness can be traced back to when I was 15-16 years old as well as the clumsiness.
Anyone who has experienced the same and had a positive diagnosis? Or even the opposite?
Thanks!!!!
** 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. **
It all started around 2010 when I was living in Florida. I would often smell cigarette smoke. I don't smoke nor does anyone in my house. It would happen anywhere. I attributed this to living on a somewhat busy road and could smell pedestrians smoking as they passed by. Fast forward to 2013...I moved to VA and continued to experience the same smell. Thinking this was weird, I went to the Dr. I was eventually referred to an ENT who requested an MRI (can't recall if it was with or without contrast) and an EEG to rule out seizures. The EEG was normal (phew) but she said I had "spots on my scan indicative of vasculitis"...interesting right? So here I sit waiting for my neuro appt in 2 weeks.
My fiance and I have been discussing and researching and I've been making a list of my symptoms. I wanted to share them because they don't really mesh with all the CNS vasculitis symptoms. Bear with me...
- toes go numb (not all toes...it's usually one at a time and lasts for 10-15 minutes...this has been going on for possibly 10 years...I originally attributed this to the shoes but it even happens in flip flops)
- numb skin (this is a weird one and hard to explain...this only happens for a day or so and it's only in specific locations...the last time was on the back of my left calf...I could feel I was touching the skin but it felt numb which was super weird...I can recall the first instance of this back in 2009)
- weakness and joint pain in the right hand only (I am a right hander and my left is unaffected...I've had some issues with strength and joint pain in only two of the fingers over the last month...the weakness has been progressive for a few months now but the pain is new in the last few weeks)
- blurry vision (i got my first set of glasses in 1998 and lasik in 2002...perfect vision since however my vision has slightly worsened in the last few years. I now wear glasses again but only some days. Somedays I see like a champ and other days I rely heavily on my glasses)
- numb and tingly hands (this has been happening over the last 2 years and it's very random...my hands will go numb and tingle...when this happens I can't open them...no strength. It'll last for a few minutes and then back to normal)
- clumsiness (I've always thought I was just a clumsy person...if it's there, I will run into it. But I can see myself heading towards something and I know I need to veer but my body doesn't do what the brain is telling it. I've also just been standing there and fell to the ground. That's more rare but has happened. I often trip over nothing at all.)
- Forgetfulness (I'm a smart person and am very articulate. I can recall a conversation like you wouldn't believe but over the last year I've found myself forgetting words. I'll be talking to someone and ask them about a specific thing or item and cannot for the life of me recall the word so I end of describing it...very frsutrating. This has happened randomly over the last few years but has increased immensley over the last 3-6 months.)
- Moodiness (Man you'd think I was menstrating 24/7...I go from happy to I'm gonna kill someone in a matter of seconds...for no reason at all! It's totally unprevoked and totally not like me. Just the other day I was looking at graham crackers andstarted crying in the aisle. No clue why!)
- Fatigue (This started about 8 months ago but has increased in the last 2-3 months. I cannot get enough sleep. I used to function just fine on 6 hours...not I need 8 to even crawl out of bed and am still exhausted all day. I'm not falling asleep at my desk or anything it's just I'm wasted...I have nothing to give. Even 12 hours of sleep isn't enough. I wake at 6 and am ready for bed by 8 at night.)
- Lightheadedness/ Dizzy (I used to attribute this to low blood pressure. Although the Docs will never tell me it's "low" I register in the 105/75 range. Sometimes it'll drop to 90/65 but I'm usually right around 100. I get dizzy upon standing and sometimes my vision goes black even though my eyes are open. This also happens when I'm just standing or walking around...just a quick bout of lightheadedness and dizziness and then it passes.)
- Constipation (This has never been an issue for me...but I find myself constipated at least monthly over the last year and at least weekly over the last month. I eat plenty of fiber.)
- Spasms? (I get these weird electrical shocks through my body that cause small twitches. They don't last long and they come/go...weird).
- Stabbing pains (A few months back I had this stabbing pain in my right temple. I have a pretty high tolerance for pain but it brought me to my knees. It happened continually over the course of a day and was gone. I get them in my legs sometimes. During the night a few nights back, I'd swear someone was stabbing my in the left calf with a crocdile dundee knife!)
- Nausea (I get these waves of nausea that come and go for unknown reasons. This is new over the last month or so.)
- Headaches (I used to be a migraine sufferer in my early 20s but I stopped having them around 26 yo. I had one three or so years ago but none since. Over the last month though I've had a daily dull headache that'll come and go. I woke with one this morning and it was gone after my shower but now it's back.)
- Dropping Things (In the past couple of months...when the hand weaknes started, I've noticed I drop a lot of things. For instance, my son handed me something yesterday. I felt it, I clearly had a hold of it but when he let go, I dropped it. That's happened several times.)
- Fog (Sometimes I feel like a zombie...just walking around with this fog in my head...can't think, can't function, can't do a thing! Very annoying!)
- Tired Arms/Legs (This sort of goes with the fatigue...my arms have been getting very tired. I've noticed over the last several weeks I've had to take several breaks when blow drying my hair. I have to stop, drop my arms, wait for them to stop burning, and start again. This is something I've felt before but it normally follows a heavy arm day in the gym but that hasn't been the case. Stairs...I used to be able to climb them and I'm in pretty darn good shape but I find that my quads are burning like you wouldn't believe in a matter of seconds when doing any type of muscle exercise on my legs.)
- Heat Issues (If I work out in the heat, I swear I'm going to die! I get so overheated and I sweat excessively for a girl...gross! I've also experienceed hot flashes over the last 10 years or so...just a quick flash of heat, causes a bitif sweat and then gone.)
- Chest Tightness (This has happened over the last few years but it'll only last maybe 5-30 minutes...nothing like days. I have to take some deep breaths because I feel like my chest is tight.)
I know that's a lot! Sorry but thanks for reading. I'm a 34 year old female with no family history of MS. I'm just concerned over the MRI and the symptoms I've had and am having. The dizzy/lightheadedness can be traced back to when I was 15-16 years old as well as the clumsiness.
Anyone who has experienced the same and had a positive diagnosis? Or even the opposite?
Thanks!!!!
** 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. **
Tira
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