Introduction
charliesgold
Posts: 235 Member
Hi all I just wanted to take a moment to introduce myself.
For the time being I am an honorary member I suppose. I am the daughter of a mother with MS. She was diagnosed when I was in college after becoming paralyzed on one side of her body. Thankfully she gained back control of that side of her body and began a regime of medication that managed her symptoms well. I am 31 years old - 32 in April, and for the past couple of years have had a dreading feeling that MS is creeping up on me. Many times those close to me will say that it's paranoia and while it is okay to be concerned, I shouldn't let it rule my life. It's hard not to though. I have no health insurance (yay) so this means no possibility for diagnosis because good luck getting insurance after a diagnosis, but I am working on applying for Medicaid so that I can begin the process of diagnosis / ruling out MS.
I don't want to get a dx of MS, but in the back of my mind I expect it. I expect it because my mother has it and I expect it because in the past couple of years I have had two very significant episodes that indicate flares. Currently I would say that I am at the tail end of a flare...at least I can only hope that I am.
This is a very confusing period as I'm sure you all know having gone through it yourselves.
On the average day I am clumsy, I have cognitive lapses (a huge part of my mom's MS), weakness, lack of coordination, affected gait (according to my mother) and pins and needles or numbness. I also suffer from frequent headaches and migraines. When I have particularly bad days my cognitive power seems to be that of a three year old...at least that's how it feels. I have aches, not normal aches but aches that are almost flu-like, sometimes it hurts just to put my feet on the floor. One day I literally sat in my car for ten minutes trying to figure out how to make the windshield wipers work. I gave up and ended up manually pulling the lever each time I needed them to work.
Today, I am at what I can only hope is the tail end of a really rough patch. For the last two and a half weeks I have been exhausted. I'm talking sleeping twelve hours a night, getting out of bed to eat and being tired again. It's not a tiredness I can explain though, it's a bone aching tiredness. I feel like my bones literally ache. My feet in particular hurt, my ankles too. I feel as though I have spent an entire day walking around Disney bare foot with a three year old in tow. Today I feel as though I have a little more energy, like I can actually stay up for more than a couple of hours.
I just feel lost right now. I'm working on Medicaid so I can start on some kind of Dr plan or at least get a consult with my mom's old neurologist. The thing is that the few people I do tell make me feel like I'm worrying for nothing. Then there is my partner who I can't bring myself to tell, at least not until I get some kind of healthcare sorted out because what good would it do for us both to worry? I can't tell my mother because aside from having enough on her plate, I know she would blame herself. I just feel stuck.
I'm hoping to get the Medicaid application sorted out this week and go from there.
Sorry for making this so long and for rambling on.
For the time being I am an honorary member I suppose. I am the daughter of a mother with MS. She was diagnosed when I was in college after becoming paralyzed on one side of her body. Thankfully she gained back control of that side of her body and began a regime of medication that managed her symptoms well. I am 31 years old - 32 in April, and for the past couple of years have had a dreading feeling that MS is creeping up on me. Many times those close to me will say that it's paranoia and while it is okay to be concerned, I shouldn't let it rule my life. It's hard not to though. I have no health insurance (yay) so this means no possibility for diagnosis because good luck getting insurance after a diagnosis, but I am working on applying for Medicaid so that I can begin the process of diagnosis / ruling out MS.
I don't want to get a dx of MS, but in the back of my mind I expect it. I expect it because my mother has it and I expect it because in the past couple of years I have had two very significant episodes that indicate flares. Currently I would say that I am at the tail end of a flare...at least I can only hope that I am.
This is a very confusing period as I'm sure you all know having gone through it yourselves.
On the average day I am clumsy, I have cognitive lapses (a huge part of my mom's MS), weakness, lack of coordination, affected gait (according to my mother) and pins and needles or numbness. I also suffer from frequent headaches and migraines. When I have particularly bad days my cognitive power seems to be that of a three year old...at least that's how it feels. I have aches, not normal aches but aches that are almost flu-like, sometimes it hurts just to put my feet on the floor. One day I literally sat in my car for ten minutes trying to figure out how to make the windshield wipers work. I gave up and ended up manually pulling the lever each time I needed them to work.
Today, I am at what I can only hope is the tail end of a really rough patch. For the last two and a half weeks I have been exhausted. I'm talking sleeping twelve hours a night, getting out of bed to eat and being tired again. It's not a tiredness I can explain though, it's a bone aching tiredness. I feel like my bones literally ache. My feet in particular hurt, my ankles too. I feel as though I have spent an entire day walking around Disney bare foot with a three year old in tow. Today I feel as though I have a little more energy, like I can actually stay up for more than a couple of hours.
I just feel lost right now. I'm working on Medicaid so I can start on some kind of Dr plan or at least get a consult with my mom's old neurologist. The thing is that the few people I do tell make me feel like I'm worrying for nothing. Then there is my partner who I can't bring myself to tell, at least not until I get some kind of healthcare sorted out because what good would it do for us both to worry? I can't tell my mother because aside from having enough on her plate, I know she would blame herself. I just feel stuck.
I'm hoping to get the Medicaid application sorted out this week and go from there.
Sorry for making this so long and for rambling on.
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Replies
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Hi, sounds like you have a full plate.
My understanding is that MS isn't hereditary (at least they don't think it is). I have 3 sisters and none of them, nor my Mom or her sister have MS. Having said that - your symptoms do sound like things I've gone through. There are a lot of auto-immune diseases out there that will mimic MS though and a lot of doctors who will just look at what you describe and then at your Mom and say it's MS because that's the easiest dx. If you can, don't let that happen. The treatments for MS won't necessarily work for the other diseases in the same way and you may go through years of being treated for a disease you don't have. I don't know how the dx is reached in the US - here in Alberta the neurologist you see isn't the decision maker - the tests all get sent to a central community of neurologists who review everything and when they agree with the diagnosis then the patient is told and the treatments are started. No one doctor is responsible for the final dx.
One suggestion about the fatigue is don't let it drag you down. Yes, get extra sleep, and if you feel exhausted and like you can't funtion then don't try and push it. But if you are feeling a little better then do something to build up your strength - walk, jog, do stairs, squats
just something to keep you moving and your muscles active. Don't let MS take over your life.
I hope everything works out for you. :flowerforyou:0 -
Thank you for the welcome
I'm hoping all works out well but if not it's nice to know there's support here if I need it 0 -
Hi! I'm Donita & I understand that the tendency to get multiple sclerosis is hereditary as is the obese gene. I had a genetic study done for a small fee for research & I have the MS gene (which I do have) I also found out I have an obesity gene from my parents (who are both skinny) , the ALS gene etc. I really pray I don't get ALS along with MS. My neurologist feels its highly unlikely. I also have Sjogrens, RA, fibromyalgia, myofacial pain syndrome & a connective tissue disease? Don't look at me - no one can tell me what it is for sure. I also have peripheral neuropathy - does anyone else have that along with MS?? Just curious but I'm a happy, optimistic person!! 0
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Hi! I'm Donita & I understand that the tendency to get multiple sclerosis is hereditary as is the obese gene. I had a genetic study done for a small fee for research & I have the MS gene (which I do have) I also found out I have an obesity gene from my parents (who are both skinny) , the ALS gene etc. I really pray I don't get ALS along with MS. My neurologist feels its highly unlikely. I also have Sjogrens, RA, fibromyalgia, myofacial pain syndrome & a connective tissue disease? Don't look at me - no one can tell me what it is for sure. I also have peripheral neuropathy - does anyone else have that along with MS?? Just curious but I'm a happy, optimistic person!!
MS, asthma, and diabetes i call myself a triple threat!! i am somewhat happy, depending on the day HAHA0 -
Oh gosh, I'd be terrified to find out!
My fatigue run has not ended yet, I still am muddling through the medicaid application process.
I wish the world could just pause for a week so I could sleep this away!0
