Aa
EL18
Hi
Just read your post after i got back from holiday, are you from England? how is your treatment going?
I would love to chat and find out about how it has been going for you in England.
Hope your well.
Just read your post after i got back from holiday, are you from England? how is your treatment going?
I would love to chat and find out about how it has been going for you in England.
Hope your well.
Hi Samantha, sorry our posts went to the next page so I didn't see your reply until today.
I'm really sorry you're going through it at the moment. But I wouldn't read too much into the fact that you are going to have to wait for the results. When I had my first MRI done and they thought it was a prolapsed disc, when it wasn't, I was sent on my way and waited for a few weeks to see the neuroloigst. I thought because I was told they didn't find what they were looking for, that nothing was wrong. I actually remember talking to the dr saying, well there must be something, I'm not mad you know, my leg hasn't gone numb for no reason. She never said anything, just smiled. However, when I went to the neurologist he went through the mri and showed me there were lesions on my spine. I was really quite shocked, actually quiet relieved as I then knew I wasn't mad but confused as to why the other dr had said nothing. I guess I needed to wait though as the neurologist was the best person to look at the mri thoroughly.
Thanks for your thoughts about my 'mum' situation. I'm sorry to here about your mum and dad. I feel really guilty now for moaning, I should be grateful, which I am for their support and concern but like you said about your parnets in law, it's nice to be pampared sometimes, but other times it's just good to feel and be treated as normal. I did try to call my mum and I've texted her but she's ignoring me at the moment. I do feel awful as they have just moved up to be near me about 6 weeks ago. The move really was because my dad has parkinsons and they wanted to be closer to family but the tables have been turned really at the moment. I've talked to my big brother about it and he says I just need to give her time. I know he is right but she will sulk forever unless I make the first move, but that's almost like admitting I was wrong and I know I'm not...I know my own mind and know what I need right now. I just wish they would respect that, that's all. Moan, moan, moan....that's all I ever do...he he!!
I really hope you're feeling a bit brighter today. I can only imagine how tired you must get with your children but I also hope they can take your mind of things for a bit until you get your results. If they are anything like me and my 6 brothers and sisters were like...you won't be getting any peace. We were always fighting, I still have the scares to prove it and my sister still has 3 very odd shaped broken fingers....wonder how she got them...he he. In my defence I was the youngest so I had to stand my ground...she's forgiven me now.
It's really good to talk to you and also really good to compare notes on the great British NHS. Do stay in touch and I'm here anytime if you want to scream, talk, let off steam or have a laugh.
Take care
Em
I'm really sorry you're going through it at the moment. But I wouldn't read too much into the fact that you are going to have to wait for the results. When I had my first MRI done and they thought it was a prolapsed disc, when it wasn't, I was sent on my way and waited for a few weeks to see the neuroloigst. I thought because I was told they didn't find what they were looking for, that nothing was wrong. I actually remember talking to the dr saying, well there must be something, I'm not mad you know, my leg hasn't gone numb for no reason. She never said anything, just smiled. However, when I went to the neurologist he went through the mri and showed me there were lesions on my spine. I was really quite shocked, actually quiet relieved as I then knew I wasn't mad but confused as to why the other dr had said nothing. I guess I needed to wait though as the neurologist was the best person to look at the mri thoroughly.
Thanks for your thoughts about my 'mum' situation. I'm sorry to here about your mum and dad. I feel really guilty now for moaning, I should be grateful, which I am for their support and concern but like you said about your parnets in law, it's nice to be pampared sometimes, but other times it's just good to feel and be treated as normal. I did try to call my mum and I've texted her but she's ignoring me at the moment. I do feel awful as they have just moved up to be near me about 6 weeks ago. The move really was because my dad has parkinsons and they wanted to be closer to family but the tables have been turned really at the moment. I've talked to my big brother about it and he says I just need to give her time. I know he is right but she will sulk forever unless I make the first move, but that's almost like admitting I was wrong and I know I'm not...I know my own mind and know what I need right now. I just wish they would respect that, that's all. Moan, moan, moan....that's all I ever do...he he!!
I really hope you're feeling a bit brighter today. I can only imagine how tired you must get with your children but I also hope they can take your mind of things for a bit until you get your results. If they are anything like me and my 6 brothers and sisters were like...you won't be getting any peace. We were always fighting, I still have the scares to prove it and my sister still has 3 very odd shaped broken fingers....wonder how she got them...he he. In my defence I was the youngest so I had to stand my ground...she's forgiven me now.
It's really good to talk to you and also really good to compare notes on the great British NHS. Do stay in touch and I'm here anytime if you want to scream, talk, let off steam or have a laugh.
Take care
Em
Hi
Sorry you had a disagreement with your mum i know if my mum and dad were alive today they would be just the same and i must say even though my holiday in Cornwall was nice with my husbands mum and dad they would not let me lift a finger and his dad kept given me advise that if i just exercised abit more or had some vitamins i would get better (as if it was that easy!!) so in one way im glad to be back but in another its hard with the kids when to dont feel yourself and they dont understand really.
Had a chukle about the shower thing!! know that feeling!! I too have hot baths when i should not it really sets me off but sometimes i just want to soak and relax!! but i suffer afterwards.
Feel abit down today everything for the last three months has been bulding up to the MRI everybody rang me up last night expecting me to give them results and i had to say it would be another three weeks before i get the results so they all come to the conclusion that it was not serious as they would of said ( which i think is true) and ill be fine (which im not so sure about) i know its not serious but i do think its something that its something might not go away its been here mildy for a number of years already.
Try and have a chat with your mum maybe you could ring her and say " today mum im having a rest for the afternoon im taking the phone off the hook so if i dont answer dont worry" or just explain sometimes you have to have alone time im sure she will understand.
Gone on abit so ill go now.
take care
Samantha
Sorry you had a disagreement with your mum i know if my mum and dad were alive today they would be just the same and i must say even though my holiday in Cornwall was nice with my husbands mum and dad they would not let me lift a finger and his dad kept given me advise that if i just exercised abit more or had some vitamins i would get better (as if it was that easy!!) so in one way im glad to be back but in another its hard with the kids when to dont feel yourself and they dont understand really.
Had a chukle about the shower thing!! know that feeling!! I too have hot baths when i should not it really sets me off but sometimes i just want to soak and relax!! but i suffer afterwards.
Feel abit down today everything for the last three months has been bulding up to the MRI everybody rang me up last night expecting me to give them results and i had to say it would be another three weeks before i get the results so they all come to the conclusion that it was not serious as they would of said ( which i think is true) and ill be fine (which im not so sure about) i know its not serious but i do think its something that its something might not go away its been here mildy for a number of years already.
Try and have a chat with your mum maybe you could ring her and say " today mum im having a rest for the afternoon im taking the phone off the hook so if i dont answer dont worry" or just explain sometimes you have to have alone time im sure she will understand.
Gone on abit so ill go now.
take care
Samantha
Hi,
Glad the mri went ok. I know what you mean about the confined spaces, the first one I had really freaked me out too.
I've not heard of lyrica? To be honest I got so sick of taking stuff that didn't work that I stopped taking it.
I'm doing ok although I feel pretty bad as I had a bit of a disagreement with my mum yesterday. I know she is just being protective and caring but she's starting to really suffocate me. I'm trying to be as normal as I can and when people are constantly phoning to see how I am, it's really lovely but it just reminds me of how bad I actually feel.....does that make sense. Each day I get anything up to 10 calls from people, all asking how I am. It's not that I don't appreciate it but sometimes you just want to try to be 'normal' without everyone treating you like you're not. My parents phone me non stop and the agruement kicked off yesterday when I decided, heat or not, I was having a bath...I needed to shave my legs and just feel like my old self abit...can't do that in the shower, I fall over...you have to laugh really!. When I didn't answer the phone she left another message saying she was coming over as she was really worried (my husband is working away til Thursday). I know she cares but sometimes you just need some down time I guess.
Anyway, I've waffled on enough...sorry!!!
I always wondered what ***** was about...now I know.
Hope to hear from you soon.
Take care
Em
Glad the mri went ok. I know what you mean about the confined spaces, the first one I had really freaked me out too.
I've not heard of lyrica? To be honest I got so sick of taking stuff that didn't work that I stopped taking it.
I'm doing ok although I feel pretty bad as I had a bit of a disagreement with my mum yesterday. I know she is just being protective and caring but she's starting to really suffocate me. I'm trying to be as normal as I can and when people are constantly phoning to see how I am, it's really lovely but it just reminds me of how bad I actually feel.....does that make sense. Each day I get anything up to 10 calls from people, all asking how I am. It's not that I don't appreciate it but sometimes you just want to try to be 'normal' without everyone treating you like you're not. My parents phone me non stop and the agruement kicked off yesterday when I decided, heat or not, I was having a bath...I needed to shave my legs and just feel like my old self abit...can't do that in the shower, I fall over...you have to laugh really!. When I didn't answer the phone she left another message saying she was coming over as she was really worried (my husband is working away til Thursday). I know she cares but sometimes you just need some down time I guess.
Anyway, I've waffled on enough...sorry!!!
I always wondered what ***** was about...now I know.
Hope to hear from you soon.
Take care
Em
Hi,
All went well didnt like it but thats cause i have a thing about confined spaces very loud too. Have to wait for three weeks now till i see the consulstant they dont even look at the results today!! so frustrated.
You sure have been throught the mill with things health wise glad they were on the ball and got you sorted it sure sounds like ms with you if white spots were seen but thats only going by what iv researched on here and other sites.
I too get the pain like period in fact i took a pregnancy test the other day cause the crapming was simular to that too, iv had a condition though with both times i was pregnant where the hormones relax the muscles round the pubis bone and it parts too much causing pain i have this same pain now but am not pregnant!! i also get hip pain and popping and back pain and reduced sensation in my groin thigh area i can have hot water from the shower pour over it and i would not know or a pin ***** but this is not always the case.
I do feel stronger and i can walk further but then the meds im on are ment to be effective lyrica 375mg a day so who knows if its that.
Is the consultant just going to wait and see with you? cant he do something meds wise to help?
I too only got to find out what they were looking for from my wonderfull doctor who showed me the letter he wrote to her after my frist appointment which was inflammation of the central nervous system, that was before i had the crippling nerve pain and muscle spasms which completely took me out. still recovering now and that was in May.
Im from Blindly heath near Godstone and Redhill about 30 mins from Gatwick Airport.
Take Care Hun Samantha
All went well didnt like it but thats cause i have a thing about confined spaces very loud too. Have to wait for three weeks now till i see the consulstant they dont even look at the results today!! so frustrated.
You sure have been throught the mill with things health wise glad they were on the ball and got you sorted it sure sounds like ms with you if white spots were seen but thats only going by what iv researched on here and other sites.
I too get the pain like period in fact i took a pregnancy test the other day cause the crapming was simular to that too, iv had a condition though with both times i was pregnant where the hormones relax the muscles round the pubis bone and it parts too much causing pain i have this same pain now but am not pregnant!! i also get hip pain and popping and back pain and reduced sensation in my groin thigh area i can have hot water from the shower pour over it and i would not know or a pin ***** but this is not always the case.
I do feel stronger and i can walk further but then the meds im on are ment to be effective lyrica 375mg a day so who knows if its that.
Is the consultant just going to wait and see with you? cant he do something meds wise to help?
I too only got to find out what they were looking for from my wonderfull doctor who showed me the letter he wrote to her after my frist appointment which was inflammation of the central nervous system, that was before i had the crippling nerve pain and muscle spasms which completely took me out. still recovering now and that was in May.
Im from Blindly heath near Godstone and Redhill about 30 mins from Gatwick Airport.
Take Care Hun Samantha
Hi, sorry I didn't reply earlier had a bit of bad day....parent's over doing the worrying thing...!
Wow, you've been through alot.
How did the MRI go?
I got mine done pretty quickly really actually. This all started really in May. I thought I had period pain (groin pain) and after 6 weeks went to the doctor, I was a little concerned as I had cervical cancer 2 years ago. Was told it was an infection, put on tablets. Tablets didn't help at all so sent the same day for scan on ovaries as they thought the cancer may have come back and spread to my ovaries. Went to doctor for results, could hardly walk at this point as I had lost all feeling in my leg, couldn't go to the loo properly either. From doctor got sent to hospital straight away as they thought it was a prolapsed disc. Prepared for 8pm surgery, had mri to confirm where problem was....no prolapsed disc found.
Referred to Neuro, then spent a week in hospital having tests. At this point I didn't really have any other symptoms other than leg numbness, pelvis numbness, groin pain and back ache. As the days went on more weird symptoms started and this is where I am today. I got my 1st mri result (which was done with contrast) within 10 minutes as I was 'supposed' to be going to surgery. Whilst in hospital they did 2 more, one on my head and one on my spine. These were done without contrast. 1st one showed a number of white spots on my spine, others done without contrast showed nothing.
I found out whilst in hospital that they were looking at either ms or mylelitus, only because the dr left a confidential bit of paper on my bed. They had never mentioned any of this to me. I was told they wanted to see what now developed in my brian and on my spine and sent on my way with the LP headache sent from the devil himself and a new left sided facial numbness and tinnitus.
I just feel they've not been straight with me. I only found out a few weeks ago they had ruled out mylelitus because I asked a Junior Dr what area the specialist I was being sent to see was in. That's when I found out it was an MS Specialist. That's why it has been so good coming on here, as I've found out the questions I need to be asking. I feel that if I don't ask ....I don't get told.
And that's pretty much where I am right now.
Where abouts in Surrey are you? I lived in Camberley for a while.
Hope to here from you soon.
Em
x
Wow, you've been through alot.
How did the MRI go?
I got mine done pretty quickly really actually. This all started really in May. I thought I had period pain (groin pain) and after 6 weeks went to the doctor, I was a little concerned as I had cervical cancer 2 years ago. Was told it was an infection, put on tablets. Tablets didn't help at all so sent the same day for scan on ovaries as they thought the cancer may have come back and spread to my ovaries. Went to doctor for results, could hardly walk at this point as I had lost all feeling in my leg, couldn't go to the loo properly either. From doctor got sent to hospital straight away as they thought it was a prolapsed disc. Prepared for 8pm surgery, had mri to confirm where problem was....no prolapsed disc found.
Referred to Neuro, then spent a week in hospital having tests. At this point I didn't really have any other symptoms other than leg numbness, pelvis numbness, groin pain and back ache. As the days went on more weird symptoms started and this is where I am today. I got my 1st mri result (which was done with contrast) within 10 minutes as I was 'supposed' to be going to surgery. Whilst in hospital they did 2 more, one on my head and one on my spine. These were done without contrast. 1st one showed a number of white spots on my spine, others done without contrast showed nothing.
I found out whilst in hospital that they were looking at either ms or mylelitus, only because the dr left a confidential bit of paper on my bed. They had never mentioned any of this to me. I was told they wanted to see what now developed in my brian and on my spine and sent on my way with the LP headache sent from the devil himself and a new left sided facial numbness and tinnitus.
I just feel they've not been straight with me. I only found out a few weeks ago they had ruled out mylelitus because I asked a Junior Dr what area the specialist I was being sent to see was in. That's when I found out it was an MS Specialist. That's why it has been so good coming on here, as I've found out the questions I need to be asking. I feel that if I don't ask ....I don't get told.
And that's pretty much where I am right now.
Where abouts in Surrey are you? I lived in Camberley for a while.
Hope to here from you soon.
Em
x
P.s my postings are awfull today hands very shaky and eyes playing up so sorry if they are hard to read.
God Bless
God Bless
Hi,
Im from surrey, iv been under a ms specialist since May this year but my health has been on and off since the birth of my second child almost coming in bouts then going away.
Last year i had a car crash 40 mph i walked away unhurt (so i thought) the next i could not move so i went to a private chrio who xrayed my back treated me for whiplash and a lower back injury and after a few months i was ok.In jan i went back to the chrio and the doctor with numerous nerve and muscle problems and balance they both decided there was something here more then the car crash so i was refered.
After i had seen the neuro in May he ordered a MRI of the head and spine which was a three month wait!!! (oh the NHS) as i was working still and did not feel too bad i was prepared to wait but shortly after that i came down with theses awfull muscle spasms which grounded me i could not even walk or feed myself my friend took me to the doctor on monday and she rand the neuro then they fitted me in on thursday!!! so i went home to bed and there i stayed till thursday by then things were improving, he gave me amitripline which my doctor increased then changed to lyrica 375mg a day which has helped i did have another bout two weeks later but since then they have slowly gone i know just get twiches.
I still get all the other things like heat intolrance, tight bands, eye jerking and blurred focus,painfull nerve pain, hip pain,back pain groin type pain, bowel and bladder problems need i go on!!
i have been off work for nearly 8 weeks now on ssp i feel stronger but not enough to go back to a 30 hour job which is physical and look after three girls and my husband.
Did you have a MRI and what was that like? got mine tomorrow. Did you wait long for results?
I had a 30 min appointment both times iv seen him iv read that a proper neuro exam should take an hour, he covers such a wide area that the delays are long!!
Im from surrey, iv been under a ms specialist since May this year but my health has been on and off since the birth of my second child almost coming in bouts then going away.
Last year i had a car crash 40 mph i walked away unhurt (so i thought) the next i could not move so i went to a private chrio who xrayed my back treated me for whiplash and a lower back injury and after a few months i was ok.In jan i went back to the chrio and the doctor with numerous nerve and muscle problems and balance they both decided there was something here more then the car crash so i was refered.
After i had seen the neuro in May he ordered a MRI of the head and spine which was a three month wait!!! (oh the NHS) as i was working still and did not feel too bad i was prepared to wait but shortly after that i came down with theses awfull muscle spasms which grounded me i could not even walk or feed myself my friend took me to the doctor on monday and she rand the neuro then they fitted me in on thursday!!! so i went home to bed and there i stayed till thursday by then things were improving, he gave me amitripline which my doctor increased then changed to lyrica 375mg a day which has helped i did have another bout two weeks later but since then they have slowly gone i know just get twiches.
I still get all the other things like heat intolrance, tight bands, eye jerking and blurred focus,painfull nerve pain, hip pain,back pain groin type pain, bowel and bladder problems need i go on!!
i have been off work for nearly 8 weeks now on ssp i feel stronger but not enough to go back to a 30 hour job which is physical and look after three girls and my husband.
Did you have a MRI and what was that like? got mine tomorrow. Did you wait long for results?
I had a 30 min appointment both times iv seen him iv read that a proper neuro exam should take an hour, he covers such a wide area that the delays are long!!
Hello, hope you had a good break?
I live in Newcastle, although I'm orginally from North Yorkshire.
Well, things were pretty full on at the start as I got admitted into hospital for a load of tests after my left leg went completly numb. From there, it's been pretty up and down and I'm now waiting, and waiting, and waiting for that MS Specialist appointment. I know we are lucky to hve the NHS but it takes forever and I don't feel you are ever really given enough time during appointment normally although I spent an hour talking to a doctor last week...which I know is un-heard of.
So how are things going for you? Am I right in thinking that you are a fellow limbolander like me?
Where are you up to?
Em
I live in Newcastle, although I'm orginally from North Yorkshire.
Well, things were pretty full on at the start as I got admitted into hospital for a load of tests after my left leg went completly numb. From there, it's been pretty up and down and I'm now waiting, and waiting, and waiting for that MS Specialist appointment. I know we are lucky to hve the NHS but it takes forever and I don't feel you are ever really given enough time during appointment normally although I spent an hour talking to a doctor last week...which I know is un-heard of.
So how are things going for you? Am I right in thinking that you are a fellow limbolander like me?
Where are you up to?
Em
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