Aa
Very confused with if I have M.S or A.S in limboland!!!
Hi to all,
I have pottering around this site for sometime now hoping to maybe get answers to what is happening to me.
This may be a bit long, I will apolagize in advance.
About 5 yrs I became seriously poorly whilst I was at work with my breathing & flue. I had to taken 10 steriods a day for 4 weeks. In all it took me 3mnths to recover from my illness even though I still felt very tired after. About 2mnths after I had recovered my fatigue had become worse, My right leg starting playing up & I had a bad case of sciatica which for many years I had suffered with anyway. I eventualy went to the doctors 10weeks later as my leg, back & fatigue had become so bad & the more I walked the worse my right leg/hip back hurt. My doctor did loads of blood work & 1 test came back positive, which was the HLA-B27 indicating I might have Ankylosing Spondylitis. I was then referred to the Rumotolagist. I had a MRI on my back & pelvic, which came back negative. The Ruemotolagist kept giving different diagnosise but he said I have not Ankylosing Spondyltis.
Anyway forwarding on a few years, I starting suffering with sometimes very bad itching especially around my face & neck & my back was going into complete spasms which was starting to wake me up at night. Sometimes my spasms in my back would bring me to tears & if I had a bad attack I would find it hard to breath as the spasm would effect my ribs/chest. I then had more blood work to rule out allergies & B12, kidneys, liver etc, which can cause itching, again negative but no one could tell me what was causing my itching.
My eyes started to play up mainly my right, I was experiencing floaters, my head started to hurt with a pressure feeling on & off, I would feel as if my head was not there, if that makes sense. My back of my head was starting to feel numb, aswell as numbness on my face especially my nose & mouth. Then all of a sudden my balance started going off key, especially if my eyes were closed, I would fall backwards. Sometimes I would topple to the right for no reason at all. On one occasion I was going upstairs when I had this horrible sensation rush go into my head, making me feel I was going to collaspe, I nearly fell down the stairs which frightened me. In the end with nagging from my caring hubby, because on another occasion a hot cup of water just dropped from my right hand nearly scolding me, this was not the first time I have dropped things, but I did notice my fingers tips were going numb/cold. I then went once again back to the doctors who said my balance was poor. She refered me to the balance clinic.
Going to the Balance Clinic I then had loads of balance tests & had a brain scan as the consultant did say I was displaying MS symptoms. On going back to get the results there was a Neuro there who wanted to examine me. After he examined me he said he does not think I have got MS, even he said yes you do have some of the symptoms. He said my brain scan showned signs of change but this is due to me smoking, he confirmed my right leg is partly numb, he thinks my numbness in my right finger tips is slight Carpal Tunnel Syndrome, I have no pain though in my wrist. I have jumpy reflexes which I should not be concerned about, which I did not have before. He said if the symptoms continue come back in a year.
Since I have been there, my symptoms have started to become worse. 10 days ago I was talking to my oldest child when all of a sudden I had this horrible sensation rushing in my head, I toppled over, this was the worse I have had, it scared me. Since this attack my back of my head feels so sensative with a pressure throbbing feeling aswell as numbness, my eyes are constanlty aching now, I am getting sharp shooting pains which run down my back. My itching has become so bad especially around my face & neck, soemtimes I am having electric shocks going down my spine that can also set off a itch on that part if that makes sense. I have had a really bad acid build up which on one occasion I vomited with it. My spasm in the middle of my back(rib area) feels constantly there with numbness, sometimes with the spaspms being so so painfull, the bottom of my back constantly saspms slight to painful. The tip of my tongue has gone numb & I am having this weird sensation around my mouth, like when you suck a lemon & you have that wierd sensation from it, if that makes any sense at all. I feel really spaced out.
I have got other symptoms like I sometimes experience like my inner body is shaking, I am forgetting alot more things, I even put a cup in my washing machine, emptied a packet of stuffing in the rubbish bin instead of a bowl. My legs feel constantly heavy with alot of aching feeling & sometimes my heels really hurt. My constipation has become worse, there are times I feel I am burning up from inside like now typing this my face is burning with constant itching.
The one thing I have notice this seemed to effected my right side at first.
I am sorry for how long this is, I am just trying to make sure I have mention nearly eveything. I am just so lost now & to be honest really scared, I just want answers so I can quickly get on the right track to help me & my family as especially my children are very scared to what is happening to me.
Is this MS or could this be something else that is being missed.
Thank-you to all in advance.
I have pottering around this site for sometime now hoping to maybe get answers to what is happening to me.
This may be a bit long, I will apolagize in advance.
About 5 yrs I became seriously poorly whilst I was at work with my breathing & flue. I had to taken 10 steriods a day for 4 weeks. In all it took me 3mnths to recover from my illness even though I still felt very tired after. About 2mnths after I had recovered my fatigue had become worse, My right leg starting playing up & I had a bad case of sciatica which for many years I had suffered with anyway. I eventualy went to the doctors 10weeks later as my leg, back & fatigue had become so bad & the more I walked the worse my right leg/hip back hurt. My doctor did loads of blood work & 1 test came back positive, which was the HLA-B27 indicating I might have Ankylosing Spondylitis. I was then referred to the Rumotolagist. I had a MRI on my back & pelvic, which came back negative. The Ruemotolagist kept giving different diagnosise but he said I have not Ankylosing Spondyltis.
Anyway forwarding on a few years, I starting suffering with sometimes very bad itching especially around my face & neck & my back was going into complete spasms which was starting to wake me up at night. Sometimes my spasms in my back would bring me to tears & if I had a bad attack I would find it hard to breath as the spasm would effect my ribs/chest. I then had more blood work to rule out allergies & B12, kidneys, liver etc, which can cause itching, again negative but no one could tell me what was causing my itching.
My eyes started to play up mainly my right, I was experiencing floaters, my head started to hurt with a pressure feeling on & off, I would feel as if my head was not there, if that makes sense. My back of my head was starting to feel numb, aswell as numbness on my face especially my nose & mouth. Then all of a sudden my balance started going off key, especially if my eyes were closed, I would fall backwards. Sometimes I would topple to the right for no reason at all. On one occasion I was going upstairs when I had this horrible sensation rush go into my head, making me feel I was going to collaspe, I nearly fell down the stairs which frightened me. In the end with nagging from my caring hubby, because on another occasion a hot cup of water just dropped from my right hand nearly scolding me, this was not the first time I have dropped things, but I did notice my fingers tips were going numb/cold. I then went once again back to the doctors who said my balance was poor. She refered me to the balance clinic.
Going to the Balance Clinic I then had loads of balance tests & had a brain scan as the consultant did say I was displaying MS symptoms. On going back to get the results there was a Neuro there who wanted to examine me. After he examined me he said he does not think I have got MS, even he said yes you do have some of the symptoms. He said my brain scan showned signs of change but this is due to me smoking, he confirmed my right leg is partly numb, he thinks my numbness in my right finger tips is slight Carpal Tunnel Syndrome, I have no pain though in my wrist. I have jumpy reflexes which I should not be concerned about, which I did not have before. He said if the symptoms continue come back in a year.
Since I have been there, my symptoms have started to become worse. 10 days ago I was talking to my oldest child when all of a sudden I had this horrible sensation rushing in my head, I toppled over, this was the worse I have had, it scared me. Since this attack my back of my head feels so sensative with a pressure throbbing feeling aswell as numbness, my eyes are constanlty aching now, I am getting sharp shooting pains which run down my back. My itching has become so bad especially around my face & neck, soemtimes I am having electric shocks going down my spine that can also set off a itch on that part if that makes sense. I have had a really bad acid build up which on one occasion I vomited with it. My spasm in the middle of my back(rib area) feels constantly there with numbness, sometimes with the spaspms being so so painfull, the bottom of my back constantly saspms slight to painful. The tip of my tongue has gone numb & I am having this weird sensation around my mouth, like when you suck a lemon & you have that wierd sensation from it, if that makes any sense at all. I feel really spaced out.
I have got other symptoms like I sometimes experience like my inner body is shaking, I am forgetting alot more things, I even put a cup in my washing machine, emptied a packet of stuffing in the rubbish bin instead of a bowl. My legs feel constantly heavy with alot of aching feeling & sometimes my heels really hurt. My constipation has become worse, there are times I feel I am burning up from inside like now typing this my face is burning with constant itching.
The one thing I have notice this seemed to effected my right side at first.
I am sorry for how long this is, I am just trying to make sure I have mention nearly eveything. I am just so lost now & to be honest really scared, I just want answers so I can quickly get on the right track to help me & my family as especially my children are very scared to what is happening to me.
Is this MS or could this be something else that is being missed.
Thank-you to all in advance.
Hi, I think you need to have a MRI ASAP.. I am not a Doctor, but in reading your post, I'd say that needs to be done. I was DX 23 years ago, and you sound way to familiar to how I was. Am I right in thinking you are in England, or there about.? If you are then I know your medical care is different from the States, but I hope you will really push for the MRI. Please do be careful when you are driving, this is worrisome because there isn't any warning with some of these attacks you are having.
One more thing, please don't apologize for taking up space, that's how we get to know each other and besides some times we just need a place were we can say how we "Really"feel, or what we are thinking.
You hang in there, and please keep in touch so we know how you are and what is happening with the Doctors and the Test.
I will be keeping you in my thought & Prayers{{{{~!~}}}} (this is how I send out my Hugs), yes they do go everywhere, I send them out on the winds ;-)
One more thing, please don't apologize for taking up space, that's how we get to know each other and besides some times we just need a place were we can say how we "Really"feel, or what we are thinking.
You hang in there, and please keep in touch so we know how you are and what is happening with the Doctors and the Test.
I will be keeping you in my thought & Prayers{{{{~!~}}}} (this is how I send out my Hugs), yes they do go everywhere, I send them out on the winds ;-)
Need some little advice regarding my conditon????
Since I have had my bad turn, I have felt I am hungover all the time, bright light hurts my eyes. When I went to the shop the other day which is just a 3 min walk, I was swaying away, god knows what others thought when they saw me.
But the one thing that is starting to also bother me as I have not experienced this before (except for my bottom of my leg slightly being numb.) My right arm feels like it is not attatched to me if that makes sense at all, it feels numb/cold with part of the numbness going down my side to my hip, which has set my right hip/knee/leg to throb like mad ,with very sharp shooting pains at times, making my leg feel really heavy & toes tingling. I am also having tingling/pins & needles & heavy feeling in my arm. I can still use my arm even though this can be quite differcult at times, I feel I have to push myself that bit harder to use it, but this only seems on small tasks, if that makes sense, it is hard trying to describe how it feels when been written down.
I cannot get to see my doctor for nearly 2 weeks, I am having to ring every morning to see if a appointment has become available. I am close to going to the A.E to get this sorted.
Since I have had my bad turn, I have felt I am hungover all the time, bright light hurts my eyes. When I went to the shop the other day which is just a 3 min walk, I was swaying away, god knows what others thought when they saw me.
But the one thing that is starting to also bother me as I have not experienced this before (except for my bottom of my leg slightly being numb.) My right arm feels like it is not attatched to me if that makes sense at all, it feels numb/cold with part of the numbness going down my side to my hip, which has set my right hip/knee/leg to throb like mad ,with very sharp shooting pains at times, making my leg feel really heavy & toes tingling. I am also having tingling/pins & needles & heavy feeling in my arm. I can still use my arm even though this can be quite differcult at times, I feel I have to push myself that bit harder to use it, but this only seems on small tasks, if that makes sense, it is hard trying to describe how it feels when been written down.
I cannot get to see my doctor for nearly 2 weeks, I am having to ring every morning to see if a appointment has become available. I am close to going to the A.E to get this sorted.
Yes I am on the NHS, they are very slow in alot of things they do here.
I am just so frustrated with it all, I just want to scream at them, as I know something is wrong with me, it is starting to get me down which takes alot for me.
My husband said last night was the worse I had been, my itching is getting uncontrolable, I kept waking up with really bad muscle spasm's in my back, I must have had 4hrs sleep because of it.
I am going back to my GP this week due to family now begging me to go & with also Jenn 0030 mentioning it, as I have had enough, My GP is great but there are only so many things she can do.
I really appreciate the post to me, thank-you!!!!
I am just so frustrated with it all, I just want to scream at them, as I know something is wrong with me, it is starting to get me down which takes alot for me.
My husband said last night was the worse I had been, my itching is getting uncontrolable, I kept waking up with really bad muscle spasm's in my back, I must have had 4hrs sleep because of it.
I am going back to my GP this week due to family now begging me to go & with also Jenn 0030 mentioning it, as I have had enough, My GP is great but there are only so many things she can do.
I really appreciate the post to me, thank-you!!!!
Hi Louby and welcome.
What a mess you have going on here - I'm not a medical expert so I'm going to let someone else reflect on your symptoms.
I'm wondering if you are in private care or are you being treated through the NHS? The neuro's desire to not DX you with MS makes me suspect that you are on the NHS, where it seems from this side of the pond to be a very difficult organization to work with if you have MS. They seem to want to wait until you are virtually disabled before recognizing the problems.
I hope you will come around often and keep us posted on your progress.
best wishes to you,
Lulu
What a mess you have going on here - I'm not a medical expert so I'm going to let someone else reflect on your symptoms.
I'm wondering if you are in private care or are you being treated through the NHS? The neuro's desire to not DX you with MS makes me suspect that you are on the NHS, where it seems from this side of the pond to be a very difficult organization to work with if you have MS. They seem to want to wait until you are virtually disabled before recognizing the problems.
I hope you will come around often and keep us posted on your progress.
best wishes to you,
Lulu
You need to see your general physician or Neuro for the new onset of symptoms that started 10 days ago. These problems should be addressed soon and then you can see someone for the floaters that seem to be less concerning, but should not be overlooked either.
I have no idea what sort he was, he was a professor where he did testing for patients who had balance issues.
I had testing where I had to follow a red dot, in different ways, some with special googles on, whilst another lady watched how my eyes reacted on her computor.
I then had to go on a board with a harness, where they would tilt me whilst I was looking ahead of me, either with my eyes closed or open. as soon as they tilted my feet up I lost my balance either to the right or backwards.
Because of his findings thats when he got the Neuro to examine me when I next went to the clinic which I was not expecting.
I had testing where I had to follow a red dot, in different ways, some with special googles on, whilst another lady watched how my eyes reacted on her computor.
I then had to go on a board with a harness, where they would tilt me whilst I was looking ahead of me, either with my eyes closed or open. as soon as they tilted my feet up I lost my balance either to the right or backwards.
Because of his findings thats when he got the Neuro to examine me when I next went to the clinic which I was not expecting.
What type of doctor examined your eyes? I know in the US that there are less than 30 physicians who specialize in ocular immunology (HLA-b27) type eye conditions.
Jenn
Jenn
HI thank-you for responding back to me, really appreciate that.
Yes I do have from time to time have eye problems, my vision especially in my right eye, I have which feels like floaters. At the moment my head/eyes are throbbing with shooting pains going through. My eyes have been examinded which was done when I went to the balance clinic, they did loads of tests in that area. Like followering a red line ect.
I know they have been ruling out other illness's connected with the HLA-B27, Psoriasis Arthritis, Peripheral arthritis & others with each, of which have come out negative.
I have had my cholesterol checked to rule out Peripheral Arterial Disease (PAD), as I am also complaining my right leg throbs like mad & the more I walk the worse my leg/back spasm become.
Yes I do have from time to time have eye problems, my vision especially in my right eye, I have which feels like floaters. At the moment my head/eyes are throbbing with shooting pains going through. My eyes have been examinded which was done when I went to the balance clinic, they did loads of tests in that area. Like followering a red line ect.
I know they have been ruling out other illness's connected with the HLA-B27, Psoriasis Arthritis, Peripheral arthritis & others with each, of which have come out negative.
I have had my cholesterol checked to rule out Peripheral Arterial Disease (PAD), as I am also complaining my right leg throbs like mad & the more I walk the worse my leg/back spasm become.
Hi welcome to the forum...you will find many helpful people on here. I don't know how helpful I can be but I will try and address the HLA-B27 issue.
HLA-B27 is associated with a group of diseases called seronegative spondyloarthropathies (Rheumatoid factor is negative in the spondyloarthropathies). There are many other conditions that can be associated with a positive HLA-B27. Those who test positive for the antigen have a small chance of developing AS unless there is a family history of AS.
You did saw that you were having eye troubles...
HLA-B27 is known to be involved in several eye conditions. Have you had an eye exam?
Jenn
HLA-B27 is associated with a group of diseases called seronegative spondyloarthropathies (Rheumatoid factor is negative in the spondyloarthropathies). There are many other conditions that can be associated with a positive HLA-B27. Those who test positive for the antigen have a small chance of developing AS unless there is a family history of AS.
You did saw that you were having eye troubles...
HLA-B27 is known to be involved in several eye conditions. Have you had an eye exam?
Jenn
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