Hi everyone
Hope this day fares you well and you're having the mildest of symptoms and drama, preferably none at all.
I don't know what I ought to say here but I suppose I should be open so you know what I mean. I take it people here can relate to my experience even if it turns out I don't have MS. Actually at this point I don't know what it is. I hope I am not loading but I know I am and my current partner has been so good to me about all this but I don't want to bother him 24/7.
I have had battles with illness of various sorts for a long time, since I was young and about four years ago the shaking and migraines started in a more consistent but intermittent way (it was noticeable to me). Probably because of my age, gender, ethnicity and history of glandular fever the doctor at the time recommended I get tested for MS. But I was also under a lot of stress and figured it was anxiety, which is a battle I've been fighting since youth.
Also that stress involved a bad relationship and independently my now ex had said if I had a disability he would leave me. So instead I told no one, and I left him and didn't get tested and denied there was a problem and tried to get on with life.
Things were intermittent and again my life has been very stressful so I thought hmm okay it's this and that (back of head please don't let this be MS) and doctor appointments are generally short and generic so I didn't really get to raise the issue with my new doctor until recently, when I developed a new symptom I'd never heard of before that is also known as burning feet syndrome.
It's been going on for nearly two months now, and is better than before. At first I thought it was new shoes I'd worn, and it didn't go. Doc and I tried lots of things, especially B vitamins because I've been off the dairy for a year as one of the things I learned along the way is I have issues with casein and maybe my diet was off. So we tried that plus Vitamin D and it didn't fix it. Lots of blood tests, it's not common moulds, it's not heavy metal poisoning, no diabetes (how many times have I been tested for that and always I've been fine!) even my B12 levels were normal - and that was before supplementation!
About 12 pages of blood tests I have...in short no idea and then I said ok that's it you need to know this other doctor said this years ago and this is in the back of my head frightening the hell out me, I want to see a neurologist (which was the next step anyway). Because I have no money (being sick and the kinds of issues I have had have kept me out of work) I was referred to a hospital neurologist (i am very lucky because it's covered by medicare and the hospital is not far from my house).
I got lucky and didn't have to wait 3-6 months for an appointment and he tested my peripheral nerves with the pointy stick and the reflex hammer and all that jazz I reckon you'd know about. And apparently no peripheral nerve damage - but I am presenting with peripheral neuropathy. Uhm ok. And I am also young, only 30 and he, like my doc, said this is a symptom that usually happens in old people.
So he is going to MRI my brain and spinal cord in a couple of months. And to do that I took a little slip to the MRI people and it has a note on it that says what he's looking for, mine said "?Primary Demyleniation", which I looked up to be sure (I know about myelin already) and apparently that usually means MS but it can mean other things. And I know I shouldn't be doing my head in about all this but I just had to look things up as I am anxious about it all and by sheer coincidence, will and who the he** knows how I did it in hindsight, I happened to get a psych degree throughout all this (graduated a couple of years ago) and learn a bit about neuro, enough to hang myself emotionally it would seem but it's an interesting topic no matter what's going on here.
But what I've seen so far is maybe some people who have this peripheral neuropathy don't have MS and it does happen in SLE (lupus) with CNS involvement. That killed my aunty when she was 24 and I am **** scared (pardon my language). I know what lupus is (sort of) because of that, and she had similar problems to me, emotions, food, etc and then she died, although she was much more sick when she was a kid, in and out of hospital, and I wasn't (I had other problems). I am not old enough to remember my aunty but I remember my mum telling my former shrink about it when I was a teenager and [string of curse words] that's what I might have and now it's visible??
Am I going to die?? What do I do in the next few months before I get to have an MRI (there are long queues for these)? I know when it happens my neurologist will be able to know what it is and isn't and it seems that MS has particular patterns that lupus doesn't so if it's not one it might be the other or perhaps it is something else.
The thing is no matter how much I have learned over the years I am not emotionally prepared for this. I would imagine that this limbo brings out similar emotions in other people but I'm not sure how to handle it.
What I want to do is that if I am dying or at risk of eventually not being able to walk (whenever that is) I want to live and do all the things I can do before I can no longer do it. I want to be positive and I want to find as much happiness as I can and know that my friends (who are the only support I have, my family and I are estranged) are doing well. I need them but I don't want to put pressure on them. I have lost people before and I didn't like finding out late in the story that it was going to happen, my urge was to be there for them and give them love for as long as possible no matter how limited that may have actually been.
So far I have been upfront with my fears to my partner and he is so nice he hugs me and said he would make me happy as much as he could. I am so grateful for that. I want to smile for him so he knows he makes me happy but my emotions are going up and down. Right now this limbo is confusing. I feel kind of surreal, like maybe this is all my imagination, a bad dream but it is real and I just don't want it to be. The other day I was accepting of the possibility, decided it didn't matter what the outcome was just how I deal with it. Today I am not so accepting.
I have anger and fear and sadness, and so much love for the people I love, maybe even more than before. I may not see the kids grow up (i am not a mother, these are my kids by proxy cos i adore them) and all the things I want to see. Facing the real possibility of death I finally feel like I want to live. It's so strange. But if this is it this is it, you know? Where is it all going? Maybe I don't have the same fate (?) as my aunty and I have a different fate (?) and will live to be old and maybe just have a few extra problems to live with. That would be nice. Well, not as bad as dying.
I noticed that some people turn to religion at these points and that doesn't work for me, if it works for you, I get it, we all need something at times like this. I don't fear oblivion, I just worry that I won't get to hug people or help anyone because I won't be around anymore. I have been thinking about reincarnation though. Sometimes I have believed that and it's an interesting thing for an atheist to consider but I don't have complete faith in it.
I feel that my perception in having past lives and the idea that I will be coming back in 70 years to witness teleportation (a dream I had before the feet thing started) is a sort of illusion that my mind makes up to tell me what I need to hear to feel better. If I do come back then I might just see some of those kids in their old age and that would be great but it's probably not going to happen.
My goodness I am really ranting here. But I feel better for saying all this. I hope at least if it doesn't lead to a reply that helps me it at least helps someone else not feel so alone and strange. I know with other things that hearing how others feel has helped me. If you've expressed yourself and I have witnessed that in the past thank you for doing so. Sorry if this has also brought up emotions in others that might not be so nice.
Thanks for reading/listening
unsureofanything
** 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. **
Hope this day fares you well and you're having the mildest of symptoms and drama, preferably none at all.
I don't know what I ought to say here but I suppose I should be open so you know what I mean. I take it people here can relate to my experience even if it turns out I don't have MS. Actually at this point I don't know what it is. I hope I am not loading but I know I am and my current partner has been so good to me about all this but I don't want to bother him 24/7.
I have had battles with illness of various sorts for a long time, since I was young and about four years ago the shaking and migraines started in a more consistent but intermittent way (it was noticeable to me). Probably because of my age, gender, ethnicity and history of glandular fever the doctor at the time recommended I get tested for MS. But I was also under a lot of stress and figured it was anxiety, which is a battle I've been fighting since youth.
Also that stress involved a bad relationship and independently my now ex had said if I had a disability he would leave me. So instead I told no one, and I left him and didn't get tested and denied there was a problem and tried to get on with life.
Things were intermittent and again my life has been very stressful so I thought hmm okay it's this and that (back of head please don't let this be MS) and doctor appointments are generally short and generic so I didn't really get to raise the issue with my new doctor until recently, when I developed a new symptom I'd never heard of before that is also known as burning feet syndrome.
It's been going on for nearly two months now, and is better than before. At first I thought it was new shoes I'd worn, and it didn't go. Doc and I tried lots of things, especially B vitamins because I've been off the dairy for a year as one of the things I learned along the way is I have issues with casein and maybe my diet was off. So we tried that plus Vitamin D and it didn't fix it. Lots of blood tests, it's not common moulds, it's not heavy metal poisoning, no diabetes (how many times have I been tested for that and always I've been fine!) even my B12 levels were normal - and that was before supplementation!
About 12 pages of blood tests I have...in short no idea and then I said ok that's it you need to know this other doctor said this years ago and this is in the back of my head frightening the hell out me, I want to see a neurologist (which was the next step anyway). Because I have no money (being sick and the kinds of issues I have had have kept me out of work) I was referred to a hospital neurologist (i am very lucky because it's covered by medicare and the hospital is not far from my house).
I got lucky and didn't have to wait 3-6 months for an appointment and he tested my peripheral nerves with the pointy stick and the reflex hammer and all that jazz I reckon you'd know about. And apparently no peripheral nerve damage - but I am presenting with peripheral neuropathy. Uhm ok. And I am also young, only 30 and he, like my doc, said this is a symptom that usually happens in old people.
So he is going to MRI my brain and spinal cord in a couple of months. And to do that I took a little slip to the MRI people and it has a note on it that says what he's looking for, mine said "?Primary Demyleniation", which I looked up to be sure (I know about myelin already) and apparently that usually means MS but it can mean other things. And I know I shouldn't be doing my head in about all this but I just had to look things up as I am anxious about it all and by sheer coincidence, will and who the he** knows how I did it in hindsight, I happened to get a psych degree throughout all this (graduated a couple of years ago) and learn a bit about neuro, enough to hang myself emotionally it would seem but it's an interesting topic no matter what's going on here.
But what I've seen so far is maybe some people who have this peripheral neuropathy don't have MS and it does happen in SLE (lupus) with CNS involvement. That killed my aunty when she was 24 and I am **** scared (pardon my language). I know what lupus is (sort of) because of that, and she had similar problems to me, emotions, food, etc and then she died, although she was much more sick when she was a kid, in and out of hospital, and I wasn't (I had other problems). I am not old enough to remember my aunty but I remember my mum telling my former shrink about it when I was a teenager and [string of curse words] that's what I might have and now it's visible??
Am I going to die?? What do I do in the next few months before I get to have an MRI (there are long queues for these)? I know when it happens my neurologist will be able to know what it is and isn't and it seems that MS has particular patterns that lupus doesn't so if it's not one it might be the other or perhaps it is something else.
The thing is no matter how much I have learned over the years I am not emotionally prepared for this. I would imagine that this limbo brings out similar emotions in other people but I'm not sure how to handle it.
What I want to do is that if I am dying or at risk of eventually not being able to walk (whenever that is) I want to live and do all the things I can do before I can no longer do it. I want to be positive and I want to find as much happiness as I can and know that my friends (who are the only support I have, my family and I are estranged) are doing well. I need them but I don't want to put pressure on them. I have lost people before and I didn't like finding out late in the story that it was going to happen, my urge was to be there for them and give them love for as long as possible no matter how limited that may have actually been.
So far I have been upfront with my fears to my partner and he is so nice he hugs me and said he would make me happy as much as he could. I am so grateful for that. I want to smile for him so he knows he makes me happy but my emotions are going up and down. Right now this limbo is confusing. I feel kind of surreal, like maybe this is all my imagination, a bad dream but it is real and I just don't want it to be. The other day I was accepting of the possibility, decided it didn't matter what the outcome was just how I deal with it. Today I am not so accepting.
I have anger and fear and sadness, and so much love for the people I love, maybe even more than before. I may not see the kids grow up (i am not a mother, these are my kids by proxy cos i adore them) and all the things I want to see. Facing the real possibility of death I finally feel like I want to live. It's so strange. But if this is it this is it, you know? Where is it all going? Maybe I don't have the same fate (?) as my aunty and I have a different fate (?) and will live to be old and maybe just have a few extra problems to live with. That would be nice. Well, not as bad as dying.
I noticed that some people turn to religion at these points and that doesn't work for me, if it works for you, I get it, we all need something at times like this. I don't fear oblivion, I just worry that I won't get to hug people or help anyone because I won't be around anymore. I have been thinking about reincarnation though. Sometimes I have believed that and it's an interesting thing for an atheist to consider but I don't have complete faith in it.
I feel that my perception in having past lives and the idea that I will be coming back in 70 years to witness teleportation (a dream I had before the feet thing started) is a sort of illusion that my mind makes up to tell me what I need to hear to feel better. If I do come back then I might just see some of those kids in their old age and that would be great but it's probably not going to happen.
My goodness I am really ranting here. But I feel better for saying all this. I hope at least if it doesn't lead to a reply that helps me it at least helps someone else not feel so alone and strange. I know with other things that hearing how others feel has helped me. If you've expressed yourself and I have witnessed that in the past thank you for doing so. Sorry if this has also brought up emotions in others that might not be so nice.
Thanks for reading/listening
unsureofanything
** 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. **
Sir Falls-a-lot
not just for you and your loved ones, which is fantastic on it's own, but also for lucky strangers like me who happened to have been having a really crappy day after going mental the night before in the context of some major heat sensitivity combined with despair and guilt/shame over how i acted.
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