This is my story.....
Hi
I am mswaterlilly (which I thought was ironic considering I chose that name years ago) I am here to learn and to get input about this "new me"
I have not been officially DX.... I started having odd problems about 4 years ago it started with cognitive things like trying to drive somewhere and if I did not have a GPS guiding me I would take wrong turns and even though I had driven the route before everything would look unfamiliar and I then would have an anxiety attack!
I went and seen my doctor and they put me on Anxiety meds, then came a breast lump that scared me, even the ultrasound guy asked if his superior could come look and they proceeded to do a core biopsy right there..(did I mention I have a fear of needles BAD) when the biopsy came back they said it was PASH I am still a little confused about that ... another year and I noticed that when I would be walking it was like I was tripping over imaginary things and double stepping, my hands also didn’t seem to clasp onto things and I would then drop everything, I have heard a lot from friends and family like "have you been walking long?" and "you're very clumsy!" but I had to rethink what had happened because I knew my hand had closed at least that's what I thought!
Within the next year my hands and then arms would be numb in the mornings and my hands started to ache a lot.. I also started to have balancing problems, I’d turn to go up my stairs and within two steps I would have to grab the wall because everything would move and I couldn't balance with it or I would go to walk around something and somehow my middle body wouldn’t move when I "told it to" and then I would end up with a bruise from knocking my hip and/or stomach on the edge of something (man that hurts). During that year a lot of pains became more apparent like headaches, I’ve had my fair share but they began to become debilitating for everyday things and as a mom of 4 it really becomes a problem!
I have been to numerous Doctors in those years OBGYN, Surgical for my breast, ER for my gallbladder and everyone ran tests mostly blood and urine everything came back normal they checked for thyroid and numerous things…. I began to think it was mental and that bothered me because I noticed that others around me did not seem to have these problems!
I finally, earlier last year, decided to write down everything even the small stuff that seemed to be getting worse and went to a doctor asking them to hear me out and to please figure my mess out! After I blurted out a bunch of things referring to my list which I believe my haste was because I was finally in an office and he was listening to me so I was not going to waste the time I had been given, He then decided he was going to send me to some specialists and sort it all out.. At the time the biggest thing I wanted “fixed” was the headaches they had become more frequent and painful so he scheduled a Neurologist and a Rheumatologist considering the stiffness, swelling feeling in my knees and hands!
My first appointment was with the Neurologist, as I was giving her the list she did a couple of physical exams including walking and eye follows ect.. She then ordered an MRI and a EEG!
My next appointment was with the Rheumatologist, while giving him the list he actually giggled and I paused and asked him while he was giggling. He then said he knew what I had, I then asked him what he began to explain Fibromyalgia and told me this is what I have then pretty much says diet and exercise can manage my symptoms. In the days after with my mind still trying to process this I just couldn’t accept it something didn’t sit right with it!
Yes I had a lot of the symptoms but I also had some that were not in that spectrum so I decided to just wait for the results of the Neurologist, until that appointment my husband and I ran through some things and did a little of our own research when MS came into our sights and we read over symptoms and listened to others about their symptoms and how it can progress but we decided once again wait for the MRI! I think I was more concerned with a tumor being present …
When I went in for my appointment I then told the doctor of my suspicions and why I felt this should be in the things we are aware of… she then looked at me and said well you certainly have the symptoms and she popped out of the room to look at my MRI, she returned a short time later and expressed that I did have some lesions but they are not where they are typically with MS in fact the ones she sees are usually associated with severe headaches, my inflammatory markers were good but considering how many symptoms were present “we are going to watch this closely!”
So here I am in LIMBO waiting for my next MRI in 6 months from the date of my last appointment! For now she has me on magnesium QC10 and baby aspirin a day with meds for when a headache becomes present.
Sorry so long but I seem to feel lately I need to tell the whole story.. has anyone else had a possible MS with no inflammatory markers and a steady progression?
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. **
I am mswaterlilly (which I thought was ironic considering I chose that name years ago) I am here to learn and to get input about this "new me"
I have not been officially DX.... I started having odd problems about 4 years ago it started with cognitive things like trying to drive somewhere and if I did not have a GPS guiding me I would take wrong turns and even though I had driven the route before everything would look unfamiliar and I then would have an anxiety attack!
I went and seen my doctor and they put me on Anxiety meds, then came a breast lump that scared me, even the ultrasound guy asked if his superior could come look and they proceeded to do a core biopsy right there..(did I mention I have a fear of needles BAD) when the biopsy came back they said it was PASH I am still a little confused about that ... another year and I noticed that when I would be walking it was like I was tripping over imaginary things and double stepping, my hands also didn’t seem to clasp onto things and I would then drop everything, I have heard a lot from friends and family like "have you been walking long?" and "you're very clumsy!" but I had to rethink what had happened because I knew my hand had closed at least that's what I thought!
Within the next year my hands and then arms would be numb in the mornings and my hands started to ache a lot.. I also started to have balancing problems, I’d turn to go up my stairs and within two steps I would have to grab the wall because everything would move and I couldn't balance with it or I would go to walk around something and somehow my middle body wouldn’t move when I "told it to" and then I would end up with a bruise from knocking my hip and/or stomach on the edge of something (man that hurts). During that year a lot of pains became more apparent like headaches, I’ve had my fair share but they began to become debilitating for everyday things and as a mom of 4 it really becomes a problem!
I have been to numerous Doctors in those years OBGYN, Surgical for my breast, ER for my gallbladder and everyone ran tests mostly blood and urine everything came back normal they checked for thyroid and numerous things…. I began to think it was mental and that bothered me because I noticed that others around me did not seem to have these problems!
I finally, earlier last year, decided to write down everything even the small stuff that seemed to be getting worse and went to a doctor asking them to hear me out and to please figure my mess out! After I blurted out a bunch of things referring to my list which I believe my haste was because I was finally in an office and he was listening to me so I was not going to waste the time I had been given, He then decided he was going to send me to some specialists and sort it all out.. At the time the biggest thing I wanted “fixed” was the headaches they had become more frequent and painful so he scheduled a Neurologist and a Rheumatologist considering the stiffness, swelling feeling in my knees and hands!
My first appointment was with the Neurologist, as I was giving her the list she did a couple of physical exams including walking and eye follows ect.. She then ordered an MRI and a EEG!
My next appointment was with the Rheumatologist, while giving him the list he actually giggled and I paused and asked him while he was giggling. He then said he knew what I had, I then asked him what he began to explain Fibromyalgia and told me this is what I have then pretty much says diet and exercise can manage my symptoms. In the days after with my mind still trying to process this I just couldn’t accept it something didn’t sit right with it!
Yes I had a lot of the symptoms but I also had some that were not in that spectrum so I decided to just wait for the results of the Neurologist, until that appointment my husband and I ran through some things and did a little of our own research when MS came into our sights and we read over symptoms and listened to others about their symptoms and how it can progress but we decided once again wait for the MRI! I think I was more concerned with a tumor being present …
When I went in for my appointment I then told the doctor of my suspicions and why I felt this should be in the things we are aware of… she then looked at me and said well you certainly have the symptoms and she popped out of the room to look at my MRI, she returned a short time later and expressed that I did have some lesions but they are not where they are typically with MS in fact the ones she sees are usually associated with severe headaches, my inflammatory markers were good but considering how many symptoms were present “we are going to watch this closely!”
So here I am in LIMBO waiting for my next MRI in 6 months from the date of my last appointment! For now she has me on magnesium QC10 and baby aspirin a day with meds for when a headache becomes present.
Sorry so long but I seem to feel lately I need to tell the whole story.. has anyone else had a possible MS with no inflammatory markers and a steady progression?
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. **
As far as a comparison of inflammatory markers, it wouldn't really matter. They only mean something for other conditions, not MS, regardless of the type anyone has.
,
. It took a long time for those nerves to re-route themselves, however. The brain is a truly amazing thing and I try to take care of mine now!
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