Aa
uk2 How are you?
Hello there,
Just wanted to say hello and also that I was thinking about you today,... as I remember your appointment was today.
I have been a bit busy at work so have not been around for a couple of days. Currently have such unpleasant tingling in my legs, even gabapentin does not seem to be doing much. My right arm feels heavy, even though it is not stopping me from typing.
Had acupuncture today, even though it is expensive, I am trying to believe it will help over time.
My appointment to discus meds still has not come through and I am getting a bit annoyed about it. I just can not keep chasing them while I am trying to concentrte on work. Oh, well,... that is life.
Went out for a lovely dinner with my very good friend yesterday, who has leukemia,... can you emagine what out conversations was like? A group of about 6 people came in and sat next to us. To start with they were quite loud, I guess they overheard bits and pieces of our conversation as it all suddently went quiet.
Anyways, so sorry this sounds so depressing. My friend has taken me to church the ther day, she has been very kindly including me in her prayers every day. I am now todally gutted as she had to go back to Ireland maybe for few months to look after her sick dad.... so feeling very lonely.
I have also been praying every day,... for the new vaccine trials to do well so we can all have it very soon.
Hope to hear from you very soon.
Janey1
Just wanted to say hello and also that I was thinking about you today,... as I remember your appointment was today.
I have been a bit busy at work so have not been around for a couple of days. Currently have such unpleasant tingling in my legs, even gabapentin does not seem to be doing much. My right arm feels heavy, even though it is not stopping me from typing.
Had acupuncture today, even though it is expensive, I am trying to believe it will help over time.
My appointment to discus meds still has not come through and I am getting a bit annoyed about it. I just can not keep chasing them while I am trying to concentrte on work. Oh, well,... that is life.
Went out for a lovely dinner with my very good friend yesterday, who has leukemia,... can you emagine what out conversations was like? A group of about 6 people came in and sat next to us. To start with they were quite loud, I guess they overheard bits and pieces of our conversation as it all suddently went quiet.
Anyways, so sorry this sounds so depressing. My friend has taken me to church the ther day, she has been very kindly including me in her prayers every day. I am now todally gutted as she had to go back to Ireland maybe for few months to look after her sick dad.... so feeling very lonely.
I have also been praying every day,... for the new vaccine trials to do well so we can all have it very soon.
Hope to hear from you very soon.
Janey1
Hi
So great to hear from you, so pleased your well. Your plans for the future sound great and we should all look to to the future these (though at times awfull disorders) are not a death sentance and just a challange in our lifes.
I plan for the things i am going to do when i feel better and i am getting out more and seeing friends nearly everyday which is tiring but nice.
Been a good week last week and so nice to have that freedom of not much pain i was alot more positive its amazing the effect it has on your outlook on life pain!!
The weekend was not great i tried to go to town and i just could not make it round i came back my muscles burned and they felt like i had run a hundred miles or like concrete had been poured into them, im having to rest again sit on stools to wash up and have my daughter wash and dry my hair the last flare three weeks has just really set me back but it wont keep me down!!
Even though i cant go to the church away weekend the whole time my husband will drop me and my friend down there for the day and our kids (he wont come he does not like my church) so im really looking forward to that.
I really felt i have fibro from some of my sx and the fact i have a clear MRI but my dc said i have too much pain for that but im not sure.
The LP will rule out MS and also check for any other disorder effecting the CNS (which there are many) and other disorders too so i guess i might get some answers from that and the EMG is being done too at St georges its a day admission.
I know its silly to be nervous but its the whole site area linked back to my spinal blocks but ill be ok.
To meet would be great, i still cant get the hang of this private message thing where you can send emails details to each other through this site ill work on it.
I have a Tesco super store near me near Gatwick airport we could meet in the cafe one day if you like.
I live twenty mins from there.
Im not sure where St Albans is (**** on geography and spelling it lol)
Take Care Hun x
So great to hear from you, so pleased your well. Your plans for the future sound great and we should all look to to the future these (though at times awfull disorders) are not a death sentance and just a challange in our lifes.
I plan for the things i am going to do when i feel better and i am getting out more and seeing friends nearly everyday which is tiring but nice.
Been a good week last week and so nice to have that freedom of not much pain i was alot more positive its amazing the effect it has on your outlook on life pain!!
The weekend was not great i tried to go to town and i just could not make it round i came back my muscles burned and they felt like i had run a hundred miles or like concrete had been poured into them, im having to rest again sit on stools to wash up and have my daughter wash and dry my hair the last flare three weeks has just really set me back but it wont keep me down!!
Even though i cant go to the church away weekend the whole time my husband will drop me and my friend down there for the day and our kids (he wont come he does not like my church) so im really looking forward to that.
I really felt i have fibro from some of my sx and the fact i have a clear MRI but my dc said i have too much pain for that but im not sure.
The LP will rule out MS and also check for any other disorder effecting the CNS (which there are many) and other disorders too so i guess i might get some answers from that and the EMG is being done too at St georges its a day admission.
I know its silly to be nervous but its the whole site area linked back to my spinal blocks but ill be ok.
To meet would be great, i still cant get the hang of this private message thing where you can send emails details to each other through this site ill work on it.
I have a Tesco super store near me near Gatwick airport we could meet in the cafe one day if you like.
I live twenty mins from there.
Im not sure where St Albans is (**** on geography and spelling it lol)
Take Care Hun x
Hello again!
Sorry for me not replying for a few days, I have been sooo busy at work, but that should not be an excuse. This forum in general, talking to you and few close friends is so much more important to me,... my hubbie sometimes gets a little cross with me since he says I should always, always make time to do something that is important to me.
I am pleased to hear you are getting some advise on relationships, what a wonderufl attidue to have. Some pople do find it hard to accept help and advice from others, or they find it intrusive,ect Oh, not me though! Bring it on!!!
Bril your hubbie is getting a better job Hope all goes well for him.
I do not have an ms nurse at the moment, they told me she is not starting until sometimes in November and already has a long list of people she might want to see first. At the moment I count my blessings,... I feel I am in a good shape (apart from my still wonky eye and slight heaviness in right arm, could be the gardening,... ).
As far as any life planning is concerned at the moment I try to plan everything, sort of pretending as if nothing happened,... I do not not know if this is a good thing or not. But I think while I can I can not put my life on hold,...I have plans to travel,... to have a baby, to decorate, to do gardening and most importantly see my friends. I pray I will be able to do all these things. Yes, you are right, I have been blessed with wonderful husband.
Your friend is doing the right thing, she is living her life and that is good. She is probaply doing more than some other people. I always have a lot of admiration for people who are suffering with one thing or the other, but are not AFRAID TO LIVE.
I read your other message, how scared you are aobut your lumbar puncture. My consultant said lp is quite definitive in providing answers to confirm ms. I am jsut not certain why they are doing it since your mri's were all clear.
Oh, I have spoken to my hubbie, he suggested perhaps I drive to meet you somewhere near where you live (it is much easier for me since I do not have kiddies to look after), perhaps you have Tesco, or some other point. I know we are not allowed to post any details, so no details,... other than I live in St Albans (big secret! :-) ) See what you think and we could exchange e-mails, etc.
Look after yourself and look forward to hearing from you.
Janey1 x
Sorry for me not replying for a few days, I have been sooo busy at work, but that should not be an excuse. This forum in general, talking to you and few close friends is so much more important to me,... my hubbie sometimes gets a little cross with me since he says I should always, always make time to do something that is important to me.
I am pleased to hear you are getting some advise on relationships, what a wonderufl attidue to have. Some pople do find it hard to accept help and advice from others, or they find it intrusive,ect Oh, not me though! Bring it on!!!
Bril your hubbie is getting a better job Hope all goes well for him.
I do not have an ms nurse at the moment, they told me she is not starting until sometimes in November and already has a long list of people she might want to see first. At the moment I count my blessings,... I feel I am in a good shape (apart from my still wonky eye and slight heaviness in right arm, could be the gardening,... ).
As far as any life planning is concerned at the moment I try to plan everything, sort of pretending as if nothing happened,... I do not not know if this is a good thing or not. But I think while I can I can not put my life on hold,...I have plans to travel,... to have a baby, to decorate, to do gardening and most importantly see my friends. I pray I will be able to do all these things. Yes, you are right, I have been blessed with wonderful husband.
Your friend is doing the right thing, she is living her life and that is good. She is probaply doing more than some other people. I always have a lot of admiration for people who are suffering with one thing or the other, but are not AFRAID TO LIVE.
I read your other message, how scared you are aobut your lumbar puncture. My consultant said lp is quite definitive in providing answers to confirm ms. I am jsut not certain why they are doing it since your mri's were all clear.
Oh, I have spoken to my hubbie, he suggested perhaps I drive to meet you somewhere near where you live (it is much easier for me since I do not have kiddies to look after), perhaps you have Tesco, or some other point. I know we are not allowed to post any details, so no details,... other than I live in St Albans (big secret! :-) ) See what you think and we could exchange e-mails, etc.
Look after yourself and look forward to hearing from you.
Janey1 x
Hi
So pleased to hear from you. Iv been trying to work out this private message system as one of the other members sent me a private message to my email and we exchanged details that way and nobody can see the post, but i cant work it out maybe you could if you have time.
I get a wonderfull christian mag that really helps me in family life and gives great advise on relationships its hard for us all when im ill i just have nothing to give at the moment but i know that will change i have faith of that.
I got my letter from st georges in London and have to just arrange a time now when to go up for my day addmission for my tests!
Iv been alot more postive these last few days and iv felt well enough to go out and visit friends which has felt great!!
Iv decided to control this illness not the other way round, i will embrace the good days and just ride the bad ones out.
My husband has found a better paid job and starts in October so hopefully our debt problems will reduce, it means he will be away from the home 12 hours a day and i worry how ill cope on my bad days but i have my friends and my church to help.
Its not silly to make this condition your friend better that then your enemie and fight it all the time go with it and find out as much as possible stay fit and heathly seems to be the key to this i know its helped my friend and to ge tthe right treatment.
Have you a MS nurse yet i would talk to her about your eye problem, my friend has eye problems they monitor hers.
I understand that you feel its a time bomb i can never plan anything anymore as i never know when i will have a bad day but my plans have changed my life has changed my i wont let it change who i am and i refuse (which has happened alot lately) for it to be a daily focus in my life.
You have a wonderfull life planed out for you janey it sounds like you have a supportive husaband and kind friends, get as much support as possible and embrace this as just a challange in your life, my friend has had MS for ten years she has bowel probs and eye probs and numb in most places but she is fit she has three children and has just started collage to train to be a midwife. Ms does not always mean it is a death sentance.
Take Care and God Bless
Samantha x
So pleased to hear from you. Iv been trying to work out this private message system as one of the other members sent me a private message to my email and we exchanged details that way and nobody can see the post, but i cant work it out maybe you could if you have time.
I get a wonderfull christian mag that really helps me in family life and gives great advise on relationships its hard for us all when im ill i just have nothing to give at the moment but i know that will change i have faith of that.
I got my letter from st georges in London and have to just arrange a time now when to go up for my day addmission for my tests!
Iv been alot more postive these last few days and iv felt well enough to go out and visit friends which has felt great!!
Iv decided to control this illness not the other way round, i will embrace the good days and just ride the bad ones out.
My husband has found a better paid job and starts in October so hopefully our debt problems will reduce, it means he will be away from the home 12 hours a day and i worry how ill cope on my bad days but i have my friends and my church to help.
Its not silly to make this condition your friend better that then your enemie and fight it all the time go with it and find out as much as possible stay fit and heathly seems to be the key to this i know its helped my friend and to ge tthe right treatment.
Have you a MS nurse yet i would talk to her about your eye problem, my friend has eye problems they monitor hers.
I understand that you feel its a time bomb i can never plan anything anymore as i never know when i will have a bad day but my plans have changed my life has changed my i wont let it change who i am and i refuse (which has happened alot lately) for it to be a daily focus in my life.
You have a wonderfull life planed out for you janey it sounds like you have a supportive husaband and kind friends, get as much support as possible and embrace this as just a challange in your life, my friend has had MS for ten years she has bowel probs and eye probs and numb in most places but she is fit she has three children and has just started collage to train to be a midwife. Ms does not always mean it is a death sentance.
Take Care and God Bless
Samantha x
Hello again,
Glad you are keeping your spirits up,... and appreciating what you have in life,... children, friends and your faith. A doctor a sow recently saw asked me how many friends I have. I was extremely pleased to say I do not have many, but those I have do count and I can always talk to them without feeling it bothers them.
Sam I am so sorry things are not great between you and hubbie,... there is not a lot I can suggest as you are already suffering so much with your at the moment unknown painful condition.
I would gladly get and send you a copy of the magazine if there was a way of communicating ,...
Be honest with you I am pleased I am feeling okish at the moment, really worried about my eye and might just visit Moorfields of my own accord. I do have some tingling in my legs and I am just trying to ignore it and I also have pussating feeling in my fingers and hope nothing is 'brewing'.
You are getting another mri which is bril, but I am really concerned that 12 weeks is just so long to wait. Perhaps I was just lucky and got mri within about 3-4 weeks in Luton Dunstable and Mount Vernon.
Make sure you do enjoy your good days,... it is very important and you will find as days go by they are more memorable than those from some time ago. Since my dx I feel my life is so different,... there are many occassions and situations on daily basis where once I thought some things were important for one or the other reason,... now I just do not care about trivial things. I do find I have to be careful sometimes what I say, in the first 2-3 weeks I could not bear being in a group of people be it lunch time, evening or worky stuff as all those people would talk just trivial stuff and I just wanted to shout at then how unimportant all that was what they were saying.
It eased off a bit, I guess only because I started feeling a bit better. But I feel this is such a time bomb I have to live with every single day of my life and do not know when and how it might attack. I am scared,... most of the time.
My friend whose husband died a couple of years ago advised in order to survive I have to make this condition sort of my friend and almost ask it kindly not to attack my body. Gosh it sounds vvery silly but I do it anyway.
Looking forward to hearing from you.
All for now.
Janey1 x
Glad you are keeping your spirits up,... and appreciating what you have in life,... children, friends and your faith. A doctor a sow recently saw asked me how many friends I have. I was extremely pleased to say I do not have many, but those I have do count and I can always talk to them without feeling it bothers them.
Sam I am so sorry things are not great between you and hubbie,... there is not a lot I can suggest as you are already suffering so much with your at the moment unknown painful condition.
I would gladly get and send you a copy of the magazine if there was a way of communicating ,...
Be honest with you I am pleased I am feeling okish at the moment, really worried about my eye and might just visit Moorfields of my own accord. I do have some tingling in my legs and I am just trying to ignore it and I also have pussating feeling in my fingers and hope nothing is 'brewing'.
You are getting another mri which is bril, but I am really concerned that 12 weeks is just so long to wait. Perhaps I was just lucky and got mri within about 3-4 weeks in Luton Dunstable and Mount Vernon.
Make sure you do enjoy your good days,... it is very important and you will find as days go by they are more memorable than those from some time ago. Since my dx I feel my life is so different,... there are many occassions and situations on daily basis where once I thought some things were important for one or the other reason,... now I just do not care about trivial things. I do find I have to be careful sometimes what I say, in the first 2-3 weeks I could not bear being in a group of people be it lunch time, evening or worky stuff as all those people would talk just trivial stuff and I just wanted to shout at then how unimportant all that was what they were saying.
It eased off a bit, I guess only because I started feeling a bit better. But I feel this is such a time bomb I have to live with every single day of my life and do not know when and how it might attack. I am scared,... most of the time.
My friend whose husband died a couple of years ago advised in order to survive I have to make this condition sort of my friend and almost ask it kindly not to attack my body. Gosh it sounds vvery silly but I do it anyway.
Looking forward to hearing from you.
All for now.
Janey1 x
Hi
Weekend not bad saturday not a good day but today was fine i was out all day church and a baptiam till two kids had a great time as it was a pool pary afterwards then met up with a friend, feeling it now though, ill ask my husband about it but things are not great between us at the moment andf he doesnt really like these sites anyway but ill see what he says.
Been sleeping better since on diazapam and quinine tablets at night the cramps have got less.
I will try and get that magarzine ill see if my husaband can pick it up for me.
Really pleased your feeling well its so nice to have that freedom you enjoy it hun!!
I got my letter for my next MRI another 12 week wait not received a letter from st georges hospital yet, iv really got to live my life not in waiting but in just enjoying the good days like today but its so hard as i want some answers!!
But i have ablessed life i have three beautifull children my frinds and my faith!!
Take Care x
Weekend not bad saturday not a good day but today was fine i was out all day church and a baptiam till two kids had a great time as it was a pool pary afterwards then met up with a friend, feeling it now though, ill ask my husband about it but things are not great between us at the moment andf he doesnt really like these sites anyway but ill see what he says.
Been sleeping better since on diazapam and quinine tablets at night the cramps have got less.
I will try and get that magarzine ill see if my husaband can pick it up for me.
Really pleased your feeling well its so nice to have that freedom you enjoy it hun!!
I got my letter for my next MRI another 12 week wait not received a letter from st georges hospital yet, iv really got to live my life not in waiting but in just enjoying the good days like today but its so hard as i want some answers!!
But i have ablessed life i have three beautifull children my frinds and my faith!!
Take Care x
Very quick hello,...hope you are having a lovely weekend,...
Just wanted to let you know that there is quite a good qrticle about fibro in magazine called Healthy (Srpt/Oct issue) and you can get it from Holland and BArret.
Be in touch soon
Janey1 x
Just wanted to let you know that there is quite a good qrticle about fibro in magazine called Healthy (Srpt/Oct issue) and you can get it from Holland and BArret.
Be in touch soon
Janey1 x
Hello there,
Sorry have not replied for a couple of days,... have been busy, busy, busy at work. Apart from my
left eye that is bothering me at the moment I feel very good so have been concentrating on my work which I enjoy.
Replied to your message you posted earlier,... so sorry to hear you have having a bad time at the moment,... I am really lucky not having had any painfull experiences like that.
You need to persevere in finding out what is causes your pains and discomfort.
Would be lovely if we could have a chat, see if you kind hubby could set you up on instant messenger when or if he get a few minutes. But do not worry too much about it, we could chat here for the time being and thing of something else soon.
Hope you have a lovely and pain free weekend.
All for now.
Speak soon. Janey1 x
Sorry have not replied for a couple of days,... have been busy, busy, busy at work. Apart from my
left eye that is bothering me at the moment I feel very good so have been concentrating on my work which I enjoy.
Replied to your message you posted earlier,... so sorry to hear you have having a bad time at the moment,... I am really lucky not having had any painfull experiences like that.
You need to persevere in finding out what is causes your pains and discomfort.
Would be lovely if we could have a chat, see if you kind hubby could set you up on instant messenger when or if he get a few minutes. But do not worry too much about it, we could chat here for the time being and thing of something else soon.
Hope you have a lovely and pain free weekend.
All for now.
Speak soon. Janey1 x
Its always a joy to hear from you, you are so positive person and that is great.
I dont do Instant messager on my computer as most of my friends live near me so need for it but i could ask my husband about setting it up or we can just post on here, i totally understand where your husband is coming from the net is a scary place sometimes, we will sort something. I too feel i have known you years its odd we all seem to build relationships on here and support one another even though we have never met its a blessing to have a safe place to do this.
Had a rough night last night up till 4am with muscle cramps and pins and needles in my feet went doc this morn he gave me some quinine tablets and diazapan to help me relax and sleep.
Feeling more postive now and hopefully will get back on track soon.
Never feel guilty for feeling well it is a blessing!! when i get better i will never take my health for granted i just am thankfull for the hours,days and weeks i might be pain free.
God Bless
speak soon x
I dont do Instant messager on my computer as most of my friends live near me so need for it but i could ask my husband about setting it up or we can just post on here, i totally understand where your husband is coming from the net is a scary place sometimes, we will sort something. I too feel i have known you years its odd we all seem to build relationships on here and support one another even though we have never met its a blessing to have a safe place to do this.
Had a rough night last night up till 4am with muscle cramps and pins and needles in my feet went doc this morn he gave me some quinine tablets and diazapan to help me relax and sleep.
Feeling more postive now and hopefully will get back on track soon.
Never feel guilty for feeling well it is a blessing!! when i get better i will never take my health for granted i just am thankfull for the hours,days and weeks i might be pain free.
God Bless
speak soon x
Hello there,
Nice to hear from you,...as always. Gosh I feel now I have known you for for ages now.
Just keep going to docs until they find something so you can be treated. Sorry to hear you were in so much pain over the weekend.
Almost feel guilty feeling nearly perfect (well apart from my eye at the moment).... and so many people are feeling poorly.
Yes I have heard about fibro and it is associated with painful experiences, but do not know much about it at all. The bad moments always go at some point,... and now you feel better, which is good. Enjoy it!
Do you do instant messenger? My hubbie (being in IT) said it is always safer to provide details using instant messenger. Anyways, let me know,... I am sure we will think of something.
Take care for now and enjoy feeling good!
Janey1
Nice to hear from you,...as always. Gosh I feel now I have known you for for ages now.
Just keep going to docs until they find something so you can be treated. Sorry to hear you were in so much pain over the weekend.
Almost feel guilty feeling nearly perfect (well apart from my eye at the moment).... and so many people are feeling poorly.
Yes I have heard about fibro and it is associated with painful experiences, but do not know much about it at all. The bad moments always go at some point,... and now you feel better, which is good. Enjoy it!
Do you do instant messenger? My hubbie (being in IT) said it is always safer to provide details using instant messenger. Anyways, let me know,... I am sure we will think of something.
Take care for now and enjoy feeling good!
Janey1
Hi
Glad you had a great time in Amsterdam i love it there been lots of times.
Sorry to hear about your eye problems are you on any meds for your MS yet?
I was glad in a way that the MRI was clear but they still want to rule it out for good with the LP and EMG also they are doing another MRI of the pelvic region for nerve damage there.
I had another bad bout over the weekend i could not barly stand my muscles burned and my body hurt in all my already problem areas and then all over my body i was in bed for two days and in pain it has pasted now and i am feeling better again Thank God!
I dont think its MS it just does not present itself this fast and with so much pain i think it could be fibro or a virus attacking my CNS (if thats possible) Quix said they might be looking for CIPD not sure i got that right or what that is.
You can contact me by mobile if you want or by email address or you could write by post i think we can post email on here but not sure about phone.
Take care Hun
Glad you had a great time in Amsterdam i love it there been lots of times.
Sorry to hear about your eye problems are you on any meds for your MS yet?
I was glad in a way that the MRI was clear but they still want to rule it out for good with the LP and EMG also they are doing another MRI of the pelvic region for nerve damage there.
I had another bad bout over the weekend i could not barly stand my muscles burned and my body hurt in all my already problem areas and then all over my body i was in bed for two days and in pain it has pasted now and i am feeling better again Thank God!
I dont think its MS it just does not present itself this fast and with so much pain i think it could be fibro or a virus attacking my CNS (if thats possible) Quix said they might be looking for CIPD not sure i got that right or what that is.
You can contact me by mobile if you want or by email address or you could write by post i think we can post email on here but not sure about phone.
Take care Hun
Hello again!
Thank you for your message. Sorry I did not reply earlier, I spent a lovely 2 days in Amsterdam with a friend, but back now and very busy at work. Will keep this short as still have little bit of work to do before the end of the day...
I am very pleased your mri's were clear, ... perhaps they can now eliminate ms, I was told mri is the crucial test for that.
To answer your question, I had my first mri of my lower spine in Feb and this was negative. I had a lot of weird strange sensations from about Feb to end of August, but now I understnand it was tingling, vibrations, weakness in legs,... (unpleasant, but nothing that required hospitalisation).
VEP (visual evoked potential) in June, which was negative. Second mri about 6 weeks ago, after which my gp called that the consultant wanted to see me. Anyways, went there with my husband, she asked me do you know what that might be? I said is it ms? and she nodded.
She showed us my mri and I have lessions on my brain and upper spine. I could you see the ones on my brain as thaey are minor and she said sometimes they are hard to detect and one has to look v carefully. Those on myspine I could actually see,... they were sort of whitish.
Anyways, I have been very good for a few days, until I got a headached about 10 days ago and this lasted for few days. My gp sent me today to eye casualty as I have got pain in my left eye and I can see kind of a misty spot in the middle. When I close my right eye I can not read anything.
Wend to the eye casualty today and they did all the test (well not all as I had to drive home myself so they could not put drops in my eye). The doc was good and kind, perepheral vision in left eye under average and also problems with clolours. Otherwise he said eyesight is very good,...hm. He did not want to dignose optic neuritis as he could not see the nerve bebing inflamed at all (and that is what the gp said). However, the nerve could be inflamed behind the eyeball. There is apparently nothing they can do to combat optic neuritis, sometimes it gets worse and than it gets better. I just pray it does not go into my right eye as I need and want to work.
Thank you for including me in your prayers,... yer it sounds life is pretty hard and we all are being constrantly tried. I am really sorry you have no diagnosis (which could be seen as good too as you have clear mri). Hope they will be able to help you somehow. Be positive and persevere,... (I know, easily said,...)
Well I need to get back to work,... or perhaps just fall asleep,....
PLease let me know (not that I am being lazy to find out, just a bit short of time at the moment) if you are contable in anyother ways,... of course I would not post any personal info here,...
Take care for now and hope to hear from you soon. (oh,forgot,... hope you had a lovely weekend)
Janey1
Thank you for your message. Sorry I did not reply earlier, I spent a lovely 2 days in Amsterdam with a friend, but back now and very busy at work. Will keep this short as still have little bit of work to do before the end of the day...
I am very pleased your mri's were clear, ... perhaps they can now eliminate ms, I was told mri is the crucial test for that.
To answer your question, I had my first mri of my lower spine in Feb and this was negative. I had a lot of weird strange sensations from about Feb to end of August, but now I understnand it was tingling, vibrations, weakness in legs,... (unpleasant, but nothing that required hospitalisation).
VEP (visual evoked potential) in June, which was negative. Second mri about 6 weeks ago, after which my gp called that the consultant wanted to see me. Anyways, went there with my husband, she asked me do you know what that might be? I said is it ms? and she nodded.
She showed us my mri and I have lessions on my brain and upper spine. I could you see the ones on my brain as thaey are minor and she said sometimes they are hard to detect and one has to look v carefully. Those on myspine I could actually see,... they were sort of whitish.
Anyways, I have been very good for a few days, until I got a headached about 10 days ago and this lasted for few days. My gp sent me today to eye casualty as I have got pain in my left eye and I can see kind of a misty spot in the middle. When I close my right eye I can not read anything.
Wend to the eye casualty today and they did all the test (well not all as I had to drive home myself so they could not put drops in my eye). The doc was good and kind, perepheral vision in left eye under average and also problems with clolours. Otherwise he said eyesight is very good,...hm. He did not want to dignose optic neuritis as he could not see the nerve bebing inflamed at all (and that is what the gp said). However, the nerve could be inflamed behind the eyeball. There is apparently nothing they can do to combat optic neuritis, sometimes it gets worse and than it gets better. I just pray it does not go into my right eye as I need and want to work.
Thank you for including me in your prayers,... yer it sounds life is pretty hard and we all are being constrantly tried. I am really sorry you have no diagnosis (which could be seen as good too as you have clear mri). Hope they will be able to help you somehow. Be positive and persevere,... (I know, easily said,...)
Well I need to get back to work,... or perhaps just fall asleep,....
PLease let me know (not that I am being lazy to find out, just a bit short of time at the moment) if you are contable in anyother ways,... of course I would not post any personal info here,...
Take care for now and hope to hear from you soon. (oh,forgot,... hope you had a lovely weekend)
Janey1
took my husband but he didnt say much either (bless him) the consulsant is not the most aprochable man (though he seemed on the ball this time i thought he was going to pat me on the head and send me on my way but he saw the need for more testing.)
I am going to ask more when at the hospital when i go for my testing i will write some questions down to ask, my blood goes back to him and you cant ring up for results you can only see him inbetween appointments if its a emergency. (NHS in the UK not great)
Sorry your in Limboland too!!
Just read that post about the young boy from hong kong how awfull that is!! i will pray for them.
God Bless
I am going to ask more when at the hospital when i go for my testing i will write some questions down to ask, my blood goes back to him and you cant ring up for results you can only see him inbetween appointments if its a emergency. (NHS in the UK not great)
Sorry your in Limboland too!!
Just read that post about the young boy from hong kong how awfull that is!! i will pray for them.
God Bless
I'm in limbo. I guess I shouldn't complain about my waiting. Mine isn't nearly so long!
Have you ever tried writing out your questions on a note before going? Or taking a friend with you who would know what to ask? I always hate to miss my chance to ask questions. Perhaps you could phone and ask a nurse what your blodd results were.
Good luck!
Zilla*
Have you ever tried writing out your questions on a note before going? Or taking a friend with you who would know what to ask? I always hate to miss my chance to ask questions. Perhaps you could phone and ask a nurse what your blodd results were.
Good luck!
Zilla*
Thanks Hun,
My last MRI took a 3 month wait to get and a three week wait for the results so i dont know how long the LP and EMG will take hopefully as its not in my area(who is so slow) and is a specialist hospital that it might be sooner but the MRI is at the same hospital where the MRI took a 3 month wait.
As for the bloods i never got the result from the last ones and his just done me some more which i dont know what for either. (im awfull at asking questions i have a thousand in my head but none come out.)
Hope you get your results soon. are you dx or in limbo land too?
My last MRI took a 3 month wait to get and a three week wait for the results so i dont know how long the LP and EMG will take hopefully as its not in my area(who is so slow) and is a specialist hospital that it might be sooner but the MRI is at the same hospital where the MRI took a 3 month wait.
As for the bloods i never got the result from the last ones and his just done me some more which i dont know what for either. (im awfull at asking questions i have a thousand in my head but none come out.)
Hope you get your results soon. are you dx or in limbo land too?
You're not ungrateful, just very human. We get so impatient, don't we? I'm waiting for the results of a test I had last week, and due to the holiday we had here in the States, it's going to take a little while longer. Phooey!
I hope time passes quickly for you before you get on to the next test and your results. And that you feel well in between!
Zilla*
I hope time passes quickly for you before you get on to the next test and your results. And that you feel well in between!
Zilla*
Hi
Im blown away you would remember my appointment day and have time to ask how i am.
I see you have replyed to the other post too but i wanted to reply to you through this one. I was hoping Quix would look at it and tell me what they may be looking for now with the more sensitive testing but i think it will get bumped down soon so i might post a new one and see if anybody has had these tests down and what they might revel and what they are like.
I prayed alot before i went in i can tell you the big man upstairs must of been bored of me by the time i went in there lol and the consultant was alot more attentive so it worked!!!
Its strange cause i am happy there are no lessions on my brain or spine ( so not really sure why the LP is needed) but at the same time i so wanted them to find something to why i am feeling this way that i could of walked away with a answer.
Why cant they MRI all the body at the same time so people dont have to wait again!! (how ungratefull am i ) not sure what the pelvis MRI is for he said he wanted to check out the nerves there what that has to the nerve pain i get on my face or arms i dont know? but i guess it would explain alot of the nerve pain in my hips and thighs.
Tell me again what di they find in your MRI findings and how long did it take them to DX you.
I know there are so many things that the MRI cant DX like central pain syndrome, complex reginonal pain syndrome fibromyagia etc (been doing alot of net surfering not much else to do while off sick at home) I just feel so down to know that i have to face another load of tests again.
Thats great your friend has been taking you to church you should keep on going, how lovely she keeps you in her prayers too, you are in my too. I know what cancer can do to a person my mother battled it fours years and a friend has just lost her life to cancer after an amazing 11 years of fighting God took great care of her. I will too pray for her and her dad. You must not feel lonely you have us on here!! and anytime janey1 you want to chat just post i would give you my email address directy but im not sure we are allowed to do that on here.
I pray your med appointment will come through soon. once again thank you so much for asking after me.
God Bless
Samantha
Im blown away you would remember my appointment day and have time to ask how i am.
I see you have replyed to the other post too but i wanted to reply to you through this one. I was hoping Quix would look at it and tell me what they may be looking for now with the more sensitive testing but i think it will get bumped down soon so i might post a new one and see if anybody has had these tests down and what they might revel and what they are like.
I prayed alot before i went in i can tell you the big man upstairs must of been bored of me by the time i went in there lol and the consultant was alot more attentive so it worked!!!
Its strange cause i am happy there are no lessions on my brain or spine ( so not really sure why the LP is needed) but at the same time i so wanted them to find something to why i am feeling this way that i could of walked away with a answer.
Why cant they MRI all the body at the same time so people dont have to wait again!! (how ungratefull am i ) not sure what the pelvis MRI is for he said he wanted to check out the nerves there what that has to the nerve pain i get on my face or arms i dont know? but i guess it would explain alot of the nerve pain in my hips and thighs.
Tell me again what di they find in your MRI findings and how long did it take them to DX you.
I know there are so many things that the MRI cant DX like central pain syndrome, complex reginonal pain syndrome fibromyagia etc (been doing alot of net surfering not much else to do while off sick at home) I just feel so down to know that i have to face another load of tests again.
Thats great your friend has been taking you to church you should keep on going, how lovely she keeps you in her prayers too, you are in my too. I know what cancer can do to a person my mother battled it fours years and a friend has just lost her life to cancer after an amazing 11 years of fighting God took great care of her. I will too pray for her and her dad. You must not feel lonely you have us on here!! and anytime janey1 you want to chat just post i would give you my email address directy but im not sure we are allowed to do that on here.
I pray your med appointment will come through soon. once again thank you so much for asking after me.
God Bless
Samantha
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