Aa
MRI Scan uploads
Hi there everyone,
I'm a newbie here but have been waiting on a Dx now for over 3 years.
I see that some members have uploaded their MRI's onto their posts in their photos. It is very interesting to see them all. I know this may sound dumb but can someone tell me how to do it?
I only have the images on the film. Do you need to have these on a cd or something before you can upload them?
One other query, how do you find out what strength MRI scanner was used. I can't see anything on the actual films, but then I don't understand them anyway! Do you have to ask or is it somewhere on the film?
Thanks if anyone can tell me
True Blue
I'm a newbie here but have been waiting on a Dx now for over 3 years.
I see that some members have uploaded their MRI's onto their posts in their photos. It is very interesting to see them all. I know this may sound dumb but can someone tell me how to do it?
I only have the images on the film. Do you need to have these on a cd or something before you can upload them?
One other query, how do you find out what strength MRI scanner was used. I can't see anything on the actual films, but then I don't understand them anyway! Do you have to ask or is it somewhere on the film?
Thanks if anyone can tell me
True Blue
Hi! If you want to upload your MRI pictures you have to have them on CD. I guess it all depends on where you had your MRI done at, on whether you have it on CD or film. Most places are trying to go to CD so if yours is on film you won't be able to do this.
Typically MRI machines are 1.5T STRENGTH. Open MRI range from 0.5T to 0.7T STRENGTH. I'm not sure if it would be on your films or not. I would asked next time or I went to a website that told what strength it was. The problem is that the better machines (the 3T) are few and far between. Most hospitals do not have them.
I will be soon going to a university hospital that advertises having a 3T, 7T, & 8T.
Take Care
Typically MRI machines are 1.5T STRENGTH. Open MRI range from 0.5T to 0.7T STRENGTH. I'm not sure if it would be on your films or not. I would asked next time or I went to a website that told what strength it was. The problem is that the better machines (the 3T) are few and far between. Most hospitals do not have them.
I will be soon going to a university hospital that advertises having a 3T, 7T, & 8T.
Take Care
Hi,
Thanks very much for your info. I didn't think I'd be able to upload my pretty pics!
No such luck with the cd but maybe that will happen the next time I go, I think I will ask about that.
Thanks also for the info on the MRI scanners. I could almost guarantee that the scanner used would only be 1.5T. I live in a regional area and the local public hospital is really crummy. They did install a new MRI but I would almost guarantee it isn't a 3T, they wouldn't have the money for that. As I live in Australia I checked on the web to see what hospitals have the 3T, there are a few interstate and one a the University in my capital city and there are other hospitals with MRI scanners but it doesn't say what sort. I think I will ring where I had the scan and ask them. It will probably take them a week to find out, they are fairly hopeless.
I will talk to my GP and see if she can find out and send me somewhere that uses the stronger one.
Thanks again, I didn't think I'd be able to post my scans.
T B
Thanks very much for your info. I didn't think I'd be able to upload my pretty pics!
No such luck with the cd but maybe that will happen the next time I go, I think I will ask about that.
Thanks also for the info on the MRI scanners. I could almost guarantee that the scanner used would only be 1.5T. I live in a regional area and the local public hospital is really crummy. They did install a new MRI but I would almost guarantee it isn't a 3T, they wouldn't have the money for that. As I live in Australia I checked on the web to see what hospitals have the 3T, there are a few interstate and one a the University in my capital city and there are other hospitals with MRI scanners but it doesn't say what sort. I think I will ring where I had the scan and ask them. It will probably take them a week to find out, they are fairly hopeless.
I will talk to my GP and see if she can find out and send me somewhere that uses the stronger one.
Thanks again, I didn't think I'd be able to post my scans.
T B
Welcome to the Forum. I am sorry that the suspect of MS is what brought you here, but we are glad that you've joined us.
Would you please give us some history of your symptoms and what testing you have had done so far? What is your doctor's opinion about what you have?
If you have come for support and understanding and possibly a sturdy shoulder, you've come to the right place. This I believe, is the greatest MS Forum on the internet today. It's is literally growing by leaps and bounds.
Glad you are with us T B. Pull up a chair and join in on the discussions.
Have a GREAT DAY...and again welcome,
Heather
Would you please give us some history of your symptoms and what testing you have had done so far? What is your doctor's opinion about what you have?
If you have come for support and understanding and possibly a sturdy shoulder, you've come to the right place. This I believe, is the greatest MS Forum on the internet today. It's is literally growing by leaps and bounds.
Glad you are with us T B. Pull up a chair and join in on the discussions.
Have a GREAT DAY...and again welcome,
Heather
Hi there, and thank you for the warm welcome.
I live in Australia am 50 yrs young divorced female.
The time difference is a bit of a problem so if I take a while to answer I am probably tucked up in bed or when I am online most other members are asleep.
Pull up a chair and grab a strong coffee, this is going to be a long post!
I have not been diagnosed as yet and my real problems started in 2005. I have had left
facial pain for a long time, many years before 2005, they could never tell me why, and I won't go into the gruesome details but I endured many wrong diagnosis and ended up at a ENT Specialist who after removing my salivary glands sub-mandibular in my neck (I had a stone caught in the duct), suggested that I might try amitriptyline for pain control as the pain did not go after the op. I got quite good relief for a few years but the pain intensified. My gp thought I should go to a Neurologist to help with pain control and sent me in 2006 to check into my problem more thoroughly.
My initial consult was a standard one I think. He made me walk the plank heel to toe ( I fell over ) tested my reflexes, not good in my left foot. Checked my eyes, touch your nose touch my hand with your finger, follow the pen with your eyes, standard stuff. Didn't have trouble there. I told him what other symptoms I had at the time which were:
Short term memory loss, I was forgetting all sorts of things,
Chronic facial pain of course,
Clumsiness, kept dropping small objects all the time, I thought I had a grip on them but they fell out of my hands. I drop lots of things, knives and forks, pegs, pens, tablets, you name it, anything small, down it goes!
I had stiffness in both my feet especially in the morning when trying to get out of bed. I could hardly walk some mornings they hurt so much, just couldn't get them going.
I also had pins and needles that were constant.
Numbness sometimes in my hands and pins and needles sometimes.
Sometimes one foot would feel icy cold and the other one normal. I would not notice unless I touched it with my hand or other foot then it felt like a block of ice.
Very very tired all the time, no energy real chronic fatigue stuff.
Depression, the amitriptyline was meant to control this.
I don't know what I did or said but the next question was "Have you ever had your brain x rayed?"
Well, no of course not!
Before I had time to ask any questions he had sent me downstairs for a blood test and given me a form to take to the MRI dept to make an appointment.
I did as I was told and had the blood test and MRI.
A week or so after the results were sent to him I had a letter that was sent out but the practice rang me before the letter got here and I had to go back in and see him.
I will quote for you the MRI findings as I'm sure they will make sense to most of you here. I don't know what strength the scanner was but would almost guarantee you that it was ancient and would have been lucky to have even been 1.5T
Radiologist:
" There are a number of abnormalities. Firstly there is a distribution of scattered T2 hyperintensities, which is not typical for the patient's age, and not in a distribution that suggest a vascular aetiology. These T2 hyper intensities are of heterogeneous sizes and shapes, scattered throughout both hemispheres, and with a predilection for areas of the deep white matter adjacent to the corpus callosum and the body of the corpus callosum itself. No posterior fossa or brain stem lesions are seen, and the rest of of the spinal cord has not been imaged. Appearances suggest demyelination, but the cause either autoimmune of vascular, is not straightforward to distinguish on this limited information."
There is some further discussion on a 12mm lesion in the right frontal cortex, adjacent to the mid line, but this is probably a defect from birth so they weren't too worried about it.
"Impression"
"Multiple foci of white matter hyperintensity, the distribution and patient age slightly favour autoimmune over vascular. A developmental venous anomaly, cavernous haemangioma are seen in the right frontal lobe."
From this the Neuro told me he suspected MS and wanted me to have lumbar puncture. I did this and the first one didn't happen, long story, and then I had one done via x ray so they got the needle in the right place. It was one of the most atrocious procedures I have ever had to endure!
This came back negative. I had another appointment to see him in 6 months time. My symptoms seemed to worsen and I told him this. He decided to do another MRI and also do one of my spine.
By this stage I had developed mild double vision, mainly when tired, either first thing in the morning or last thing at night. I went to an optometrist and had my eyes tested, I had above average pressure in my right eye but otherwise only needed reading glasses, not bad for a 48 year old! My peripheral vision wasn't too good, so I do have trouble seeing anything either to the far left or right. Anyone can sneak up on me and I wouldn't know they were coming!
I have exceeded the limit so will post part 2
I live in Australia am 50 yrs young divorced female.
The time difference is a bit of a problem so if I take a while to answer I am probably tucked up in bed or when I am online most other members are asleep.
Pull up a chair and grab a strong coffee, this is going to be a long post!
I have not been diagnosed as yet and my real problems started in 2005. I have had left
facial pain for a long time, many years before 2005, they could never tell me why, and I won't go into the gruesome details but I endured many wrong diagnosis and ended up at a ENT Specialist who after removing my salivary glands sub-mandibular in my neck (I had a stone caught in the duct), suggested that I might try amitriptyline for pain control as the pain did not go after the op. I got quite good relief for a few years but the pain intensified. My gp thought I should go to a Neurologist to help with pain control and sent me in 2006 to check into my problem more thoroughly.
My initial consult was a standard one I think. He made me walk the plank heel to toe ( I fell over ) tested my reflexes, not good in my left foot. Checked my eyes, touch your nose touch my hand with your finger, follow the pen with your eyes, standard stuff. Didn't have trouble there. I told him what other symptoms I had at the time which were:
Short term memory loss, I was forgetting all sorts of things,
Chronic facial pain of course,
Clumsiness, kept dropping small objects all the time, I thought I had a grip on them but they fell out of my hands. I drop lots of things, knives and forks, pegs, pens, tablets, you name it, anything small, down it goes!
I had stiffness in both my feet especially in the morning when trying to get out of bed. I could hardly walk some mornings they hurt so much, just couldn't get them going.
I also had pins and needles that were constant.
Numbness sometimes in my hands and pins and needles sometimes.
Sometimes one foot would feel icy cold and the other one normal. I would not notice unless I touched it with my hand or other foot then it felt like a block of ice.
Very very tired all the time, no energy real chronic fatigue stuff.
Depression, the amitriptyline was meant to control this.
I don't know what I did or said but the next question was "Have you ever had your brain x rayed?"
Well, no of course not!
Before I had time to ask any questions he had sent me downstairs for a blood test and given me a form to take to the MRI dept to make an appointment.
I did as I was told and had the blood test and MRI.
A week or so after the results were sent to him I had a letter that was sent out but the practice rang me before the letter got here and I had to go back in and see him.
I will quote for you the MRI findings as I'm sure they will make sense to most of you here. I don't know what strength the scanner was but would almost guarantee you that it was ancient and would have been lucky to have even been 1.5T
Radiologist:
" There are a number of abnormalities. Firstly there is a distribution of scattered T2 hyperintensities, which is not typical for the patient's age, and not in a distribution that suggest a vascular aetiology. These T2 hyper intensities are of heterogeneous sizes and shapes, scattered throughout both hemispheres, and with a predilection for areas of the deep white matter adjacent to the corpus callosum and the body of the corpus callosum itself. No posterior fossa or brain stem lesions are seen, and the rest of of the spinal cord has not been imaged. Appearances suggest demyelination, but the cause either autoimmune of vascular, is not straightforward to distinguish on this limited information."
There is some further discussion on a 12mm lesion in the right frontal cortex, adjacent to the mid line, but this is probably a defect from birth so they weren't too worried about it.
"Impression"
"Multiple foci of white matter hyperintensity, the distribution and patient age slightly favour autoimmune over vascular. A developmental venous anomaly, cavernous haemangioma are seen in the right frontal lobe."
From this the Neuro told me he suspected MS and wanted me to have lumbar puncture. I did this and the first one didn't happen, long story, and then I had one done via x ray so they got the needle in the right place. It was one of the most atrocious procedures I have ever had to endure!
This came back negative. I had another appointment to see him in 6 months time. My symptoms seemed to worsen and I told him this. He decided to do another MRI and also do one of my spine.
By this stage I had developed mild double vision, mainly when tired, either first thing in the morning or last thing at night. I went to an optometrist and had my eyes tested, I had above average pressure in my right eye but otherwise only needed reading glasses, not bad for a 48 year old! My peripheral vision wasn't too good, so I do have trouble seeing anything either to the far left or right. Anyone can sneak up on me and I wouldn't know they were coming!
I have exceeded the limit so will post part 2
Part 2
Are you asleep yet?
The 2nd MRI was the same as the first and nothing had changed.
My new symptoms now are terrible burning pain in my feet, the pins and needles and some numbness are there but the burning is terrible. Now I find it has crept up to my knees. My speech has become a problem, I say the wrong words or forget the correct words to say. I am having trouble remembering how to spell and my comprehension has deteriorated. I sometimes get sharp jabs of pain especially in my feet right at the end of my toes like someone is pricking me with a sharp needle. I have had some odd reflexes in my left foot. I was resting one day and it shook uncontrollably. It stopped after about a minute and never happened again.
I am very sensitive to heat and this makes all my symptoms worse and I feel like vomiting and have to go inside crank up the fan and rest.
I have reflux also but this is managed by medication. It has worsened over the past few years also and I now have an extra tablet to take. I have hypertension but this is managed by a specialist who keeps a very close eye on me.
This morning while cooking breakfast my hands got the shakes, this passed off after about 5 minutes, it was really weird. I could go on and on.....
I went for a second opinion and the Neuro didn't seem interested in me but when he looked at my MRI he changed his tune and sent me for a VEP. This came back normal. He said " You have no active lesions at the moment"
My first Neuro has changed his mind at least 5 times and can't make his mind up whether it is or it isn't. He even told my gp he was almost sure it was MS then when I went to see him he said he didn't think it was, good grief!
I am due to go back to the first Neuro next month but because of what I consider to be a real attitude on his part, I think I will ask my GP to send me to someone else. He almost insinuates that I am making my symptoms up or I must be nuts or something.
I find his attitude somewhat condescending. I used to enjoy a few glasses of wine and when I told him that I could see that he thought I must have a drinking problem. So I stopped. It made absolutely no difference to my symptoms what so ever.
I asked my GP to send me off to a psychologist hoping that he would help me cope emotionally with my illness. All was going well then after about 3 visits he asked to see my MRI scans. I told him I was almost nuts with no diagnosis and when he looked at them he said, "well none of your lesions match up with any of your symptoms it is not physiologically possible! I think it is all stress and anxiety and these symptoms are from that not from MS" You have convinced yourself you have them. He said "If you can control your anxiety and stress then your symptoms will disappear." ?????
He lost me right there. I came out of there furious frustrated and then spent the next 4 hours crying my eyes out.
Like everyone else here I am just so frustrated with no answers. I know they want to be sure before they say "yes its MS" or yes it is something else, but please I am not a nut case and I am not making my symptoms up.
The psychologist said also that I "must not" spend any time on the internet looking up information about MS as I will convince myself that I have the symptoms, oh please!
So after all that I am just in limbo land like so many others. I have been tested for B12 deficiency,thyroid, lupus, lyme disease, diabetes, you name it they have tested me for it.
So I find this great forum, read the info about MRI scanners 1.5T versus 3T and how some lesions don't show up etc and I think hey, I am not going nuts after all!
Yes I'm here for a shoulder to cry on and some understanding, and I read everyone else's frustration with symptoms and know I'm not alone. It is very comforting!
I hope that I haven't sent you off to sleep, you must have heard this story 100's of times. I'm so glad I found this forum, there is so much info here.
Any suggestions for anything that will ease the burning pain? It is just awful and I don't know how to try and relieve it. I have tried massage but it doesn't seem to help.
Thanks for listening to my long story,
T B
Are you asleep yet?
The 2nd MRI was the same as the first and nothing had changed.
My new symptoms now are terrible burning pain in my feet, the pins and needles and some numbness are there but the burning is terrible. Now I find it has crept up to my knees. My speech has become a problem, I say the wrong words or forget the correct words to say. I am having trouble remembering how to spell and my comprehension has deteriorated. I sometimes get sharp jabs of pain especially in my feet right at the end of my toes like someone is pricking me with a sharp needle. I have had some odd reflexes in my left foot. I was resting one day and it shook uncontrollably. It stopped after about a minute and never happened again.
I am very sensitive to heat and this makes all my symptoms worse and I feel like vomiting and have to go inside crank up the fan and rest.
I have reflux also but this is managed by medication. It has worsened over the past few years also and I now have an extra tablet to take. I have hypertension but this is managed by a specialist who keeps a very close eye on me.
This morning while cooking breakfast my hands got the shakes, this passed off after about 5 minutes, it was really weird. I could go on and on.....
I went for a second opinion and the Neuro didn't seem interested in me but when he looked at my MRI he changed his tune and sent me for a VEP. This came back normal. He said " You have no active lesions at the moment"
My first Neuro has changed his mind at least 5 times and can't make his mind up whether it is or it isn't. He even told my gp he was almost sure it was MS then when I went to see him he said he didn't think it was, good grief!
I am due to go back to the first Neuro next month but because of what I consider to be a real attitude on his part, I think I will ask my GP to send me to someone else. He almost insinuates that I am making my symptoms up or I must be nuts or something.
I find his attitude somewhat condescending. I used to enjoy a few glasses of wine and when I told him that I could see that he thought I must have a drinking problem. So I stopped. It made absolutely no difference to my symptoms what so ever.
I asked my GP to send me off to a psychologist hoping that he would help me cope emotionally with my illness. All was going well then after about 3 visits he asked to see my MRI scans. I told him I was almost nuts with no diagnosis and when he looked at them he said, "well none of your lesions match up with any of your symptoms it is not physiologically possible! I think it is all stress and anxiety and these symptoms are from that not from MS" You have convinced yourself you have them. He said "If you can control your anxiety and stress then your symptoms will disappear." ?????
He lost me right there. I came out of there furious frustrated and then spent the next 4 hours crying my eyes out.
Like everyone else here I am just so frustrated with no answers. I know they want to be sure before they say "yes its MS" or yes it is something else, but please I am not a nut case and I am not making my symptoms up.
The psychologist said also that I "must not" spend any time on the internet looking up information about MS as I will convince myself that I have the symptoms, oh please!
So after all that I am just in limbo land like so many others. I have been tested for B12 deficiency,thyroid, lupus, lyme disease, diabetes, you name it they have tested me for it.
So I find this great forum, read the info about MRI scanners 1.5T versus 3T and how some lesions don't show up etc and I think hey, I am not going nuts after all!
Yes I'm here for a shoulder to cry on and some understanding, and I read everyone else's frustration with symptoms and know I'm not alone. It is very comforting!
I hope that I haven't sent you off to sleep, you must have heard this story 100's of times. I'm so glad I found this forum, there is so much info here.
Any suggestions for anything that will ease the burning pain? It is just awful and I don't know how to try and relieve it. I have tried massage but it doesn't seem to help.
Thanks for listening to my long story,
T B
Welcome and thanks for writing, it's 7:50 a.m. here in NY. Just so you don't think you're crazy one of my neuro's ( no longer using her ) told me if I just breathe in and out my symptoms would go away! My current neuro told me SHE was the one that was crazy! You have a lot more going on than I do and my doc takes me very seriously so dont give up! Have to take the pup out so I will check in with you later. Hang in there!
Sue
Sue
Hello Sweetie! Thank you for sharing your story with us. A good medicine for burning pain would be Neurontin. I really hate to hear another say if you control the stress and anxiety your symptoms will disappear. We know our bodies best, there is another post here somewhere on how woman are more quickly dismissed with stress and anxiety by Dr's. It really angers me when Dr's are quick to dismiss it as such. I am sorry they are pulling that **** with you.
I am sure others will chime in with their vast knowledge of MRI readings. I am completely clueless about those things. We will always be here for you, don't pay any attention to what that shrink is saying.
Your Friend,
Ada
I am sure others will chime in with their vast knowledge of MRI readings. I am completely clueless about those things. We will always be here for you, don't pay any attention to what that shrink is saying.
Your Friend,
Ada
What ? Yup, yup, I'm awake ? What did you say ? :) Guess I need another sip of coffee.
Hi TB
Is True Blue from the Aussie song of the same name . I remember them singing it at Steve Erwin's ( the Crock Hunter) memorial, it was his favorite.( Don't quote me on this my memory is not great.)
I wanted to welcome you. You have found a great place for knowledge and comfort and friendship with people who know exactly what you are going through. Its a long journey to take by yourself . We all need to be able to to be heard and understood . So put on some comfy walking shoes ...
As to the foot pain , if you can find it, OTC Capzasin-p. There a couple of strengths . Its worth a try before getting into the heavier meds.
Don't let the shrink bother you , and it looks like You have a good attitude about her .. what a load of cra* . A lot of us have been there ..
Glad you found us , Your story wasn't too long .. I have mine scattered in bits and pieces . At least we have the gist of what's going on for you in one post .. Oh yeah .. I'm not dx.d Lots of neuro sx.s another complicated story . There is a thread , titled Regroup , by Heather , everyone has put a short version of who they are on it . Its a couple of pages back. If you can't find it I'll bump it to the front for you .
Welcome again Jo
Hi TB
Is True Blue from the Aussie song of the same name . I remember them singing it at Steve Erwin's ( the Crock Hunter) memorial, it was his favorite.( Don't quote me on this my memory is not great.)
I wanted to welcome you. You have found a great place for knowledge and comfort and friendship with people who know exactly what you are going through. Its a long journey to take by yourself . We all need to be able to to be heard and understood . So put on some comfy walking shoes ...
As to the foot pain , if you can find it, OTC Capzasin-p. There a couple of strengths . Its worth a try before getting into the heavier meds.
Don't let the shrink bother you , and it looks like You have a good attitude about her .. what a load of cra* . A lot of us have been there ..
Glad you found us , Your story wasn't too long .. I have mine scattered in bits and pieces . At least we have the gist of what's going on for you in one post .. Oh yeah .. I'm not dx.d Lots of neuro sx.s another complicated story . There is a thread , titled Regroup , by Heather , everyone has put a short version of who they are on it . Its a couple of pages back. If you can't find it I'll bump it to the front for you .
Welcome again Jo
Thanks everyone for all for your warm welcomes and posts on my situation.
Yes the true blue is from the song, just thought it was appropriate being that I am an Aussie and proud of it.
The song was very fitting for Steve Irwin, that was just so sad.
Thanks Ada for the Neurontin suggestion. I looked up this drug some time back because I am in pain all the time with my face and feet now. The first neuro was talking about putting me on dilantin the anti-epileptic drug, I did some research and I am not happy to take this medication, the side effects are horrendous and it alters your system too much. I don't have epilepsy so I really don't want to take this drug. My mother developed epilepsy after a stroke and she was on it and it knocked her about something terrible, and what is worse, she kept having fits anyway!
I have discussed Neurontin with my GP, but because I am on a pension I can't afford to get it from her, actually if I remember correctly, she is not permitted by law to prescribe it. She said it is very expensive, however, she has referred me to a pain clinic in a major public hospital in my state. I am waiting still for an appointment. My gp says that I can get Neurontin through the hospital at a pensioner rate and they can continue to prescribe it for me. I will try anything!
Thanks Jo, I will research your recommendation and see if it is available here.
It is 9.26am here and is the Monday the 14th, half way through April already! I have to try and get my chores done now so will check in a little later on. I guess it would be getting late in the US by now......
Take care all and thanks again,
T B
Yes the true blue is from the song, just thought it was appropriate being that I am an Aussie and proud of it.
The song was very fitting for Steve Irwin, that was just so sad.
Thanks Ada for the Neurontin suggestion. I looked up this drug some time back because I am in pain all the time with my face and feet now. The first neuro was talking about putting me on dilantin the anti-epileptic drug, I did some research and I am not happy to take this medication, the side effects are horrendous and it alters your system too much. I don't have epilepsy so I really don't want to take this drug. My mother developed epilepsy after a stroke and she was on it and it knocked her about something terrible, and what is worse, she kept having fits anyway!
I have discussed Neurontin with my GP, but because I am on a pension I can't afford to get it from her, actually if I remember correctly, she is not permitted by law to prescribe it. She said it is very expensive, however, she has referred me to a pain clinic in a major public hospital in my state. I am waiting still for an appointment. My gp says that I can get Neurontin through the hospital at a pensioner rate and they can continue to prescribe it for me. I will try anything!
Thanks Jo, I will research your recommendation and see if it is available here.
It is 9.26am here and is the Monday the 14th, half way through April already! I have to try and get my chores done now so will check in a little later on. I guess it would be getting late in the US by now......
Take care all and thanks again,
T B
Hi there TB and welcome to the forum! My name is Rena and It's nice to meet you even if it is under difficult circumstances!
I just wanted to mention a few things if I may? There are other anti-seizure meds that are not as hard on your system that you might want to consider and one is not near as costly as Neurontin. I have had seizures back in 1993 when I was first diagnosed and have been on Tegretol (carbemazepine) ever since. Sometimes it will help as well as Topamax...I don't know about the cost factor for Topamax but I know they tried it on my nerve pain when it first started last February. I understand that you have worries about taking anti -seizure meds for this pain but believe me, I have done a lot of research and the benefits for the most part outweigh the risks and these anti-seizure meds are about the only thing that they have found that will help with nerve pain.
I have just started taking Amytriptyline for my pain as I have tried the anti-seizure meds and the narcotics and neither do the trick for me so they are going to try the Elavil and possibly Cesamet which is a THC based medicine derived from Marijuana. I am in Canada where this has been legalized and they have been having very positive responses from it...I am at the point of trying anything as well.
I was diagnosed in 1993 and then in remission until 2007 when I believe I had a relapse. However the MS Specialist I am seeing now was not present at the time of the "relapse" so she doesn't believe that my disease is "active". It's amazing how much pain "inactive" MS causes a person and now they are having me apply for a Disablity Pension due to a disease they are treating as if they have no idea what it is. All Very Complicated.
I certainly hope that you get some relief soon trueblue and please know that you have happened upon the best MS forum that is available. The people here are kind, understanding and genuinely care about what happens to the other members and their lives and we are here for you 24/7. If you need to rant, rave, laugh, cry, we are not a group that judges anyone and please know you are more than welcome any time.
Lots of Hugs,
Rena
I just wanted to mention a few things if I may? There are other anti-seizure meds that are not as hard on your system that you might want to consider and one is not near as costly as Neurontin. I have had seizures back in 1993 when I was first diagnosed and have been on Tegretol (carbemazepine) ever since. Sometimes it will help as well as Topamax...I don't know about the cost factor for Topamax but I know they tried it on my nerve pain when it first started last February. I understand that you have worries about taking anti -seizure meds for this pain but believe me, I have done a lot of research and the benefits for the most part outweigh the risks and these anti-seizure meds are about the only thing that they have found that will help with nerve pain.
I have just started taking Amytriptyline for my pain as I have tried the anti-seizure meds and the narcotics and neither do the trick for me so they are going to try the Elavil and possibly Cesamet which is a THC based medicine derived from Marijuana. I am in Canada where this has been legalized and they have been having very positive responses from it...I am at the point of trying anything as well.
I was diagnosed in 1993 and then in remission until 2007 when I believe I had a relapse. However the MS Specialist I am seeing now was not present at the time of the "relapse" so she doesn't believe that my disease is "active". It's amazing how much pain "inactive" MS causes a person and now they are having me apply for a Disablity Pension due to a disease they are treating as if they have no idea what it is. All Very Complicated.
I certainly hope that you get some relief soon trueblue and please know that you have happened upon the best MS forum that is available. The people here are kind, understanding and genuinely care about what happens to the other members and their lives and we are here for you 24/7. If you need to rant, rave, laugh, cry, we are not a group that judges anyone and please know you are more than welcome any time.
Lots of Hugs,
Rena
Hi, I'm still lurking around when I should be doing my chores!
Thanks for the info.
Isn't it just so amazing how you can have all these symptoms and not have any active lesions?
Isn't it also amazing how I am on a disability pension because of my condition and the government is happy to allow this but the Neurologist won't commit to a diagnosis?
I was assessed by th government and they didn't hesitate, this included a medical examination......simply ridiculous.
The pain was so bad just before Christmas that I went to the A & E and the Registrar said that as a whole, MS pain was not managed effectively, completely believed me and gave me a strong narcotic in the short term. Instant relief! My GP and the 2nd Neuro canned it so I am back to square one again. I take Amytriptyline and have done so for 10 years and am on the maximum dose. The only relief I get from the pain is when I am asleep. I am just about at the end of my patience.
I'd better get moving or I'll be here all day, heaven knows how many more symptoms I will have convinced myself I have.......lol!
T B (Tara)
Thanks for the info.
Isn't it just so amazing how you can have all these symptoms and not have any active lesions?
Isn't it also amazing how I am on a disability pension because of my condition and the government is happy to allow this but the Neurologist won't commit to a diagnosis?
I was assessed by th government and they didn't hesitate, this included a medical examination......simply ridiculous.
The pain was so bad just before Christmas that I went to the A & E and the Registrar said that as a whole, MS pain was not managed effectively, completely believed me and gave me a strong narcotic in the short term. Instant relief! My GP and the 2nd Neuro canned it so I am back to square one again. I take Amytriptyline and have done so for 10 years and am on the maximum dose. The only relief I get from the pain is when I am asleep. I am just about at the end of my patience.
I'd better get moving or I'll be here all day, heaven knows how many more symptoms I will have convinced myself I have.......lol!
T B (Tara)
What really bothers me is that we are being denied Disease Modifying Drugs just because of (in my case) one neurologists opinion. It has been proven that the disease is never inactive and that I am wronglybeing denied these meds...I am currently seeking a letter from this neuro stating why exactly I am being denied. At lease if I do have another relapse, I will have proof that she denied them to me and she should be held responsible for any further disability I suffer. Time will tell I guess.
Rena
Rena
I have had MS (or been diagnosed for 13 years) and was told from the very beginning that MS is ALWAYS active, even if it's not producing lesions that can be seen on MRI. Like "micro-lesions," not detecable with our standard 1.5t and 3t powered MRI's. I was even told by a head Neuro that they have seen lesions appear over a 24 hour period and in their test subjects, actually seen that the lesion had totally disappeared within 48 hours. Had their test patients not been having MRI's every one to two days within their 3 week test period, maybe this phenomonon would have never been seen.
You do present with a very convincing case of classic MS, in MY opinion. Of course I am not a Neurologist and never claimed to be. But if it looks like a duck, quacks like a duck and walks like a duck, it IS a duck. A saying we have over here in the States. Maybe you have heard of it.
The pin ***** pain you have in the ends of your toes, sounds like something I experience periodically myself. It comes out of the blue and I will have several episodes per day, lasting a few seconds. It goes on for about a week, then it disappears as suddenly as it came on. I would suspect it's nerve pain. Just when I think I am over it, it will start again. Must be a mixed up signal from the brain down the spinal cord. I do have a lesion in my spine, so don't know if it's coming from that.
I have also experienced a burning pain in the morning, when I try to stand up. It feels like thousands of pins and needles in my feet when I try to stand up. It takes several minutes to go away, but it's a symptom I have frequently.
These dismissive doctor's I am sure, would not treat one of their family members, like they treat some of us. I once asked a doctor to pretend I was his mother sitting there with all my complaints, would he dismiss her or try to get to the bottom of my symptoms? He was totally silent. Speechless. When he regained his composure, he finally set up Nerve Conduction Studies, Electromyography (EMG) and found the source of my nerve pain. He said that he was actually glad that I put him in his place there in his office and made him think about the possibility that it WAS his mother sitting in front of him. After he admitted that, I left his practice and found another Neurologist. I hope it was a lession that he would remember, when he would dismiss patients and their symptoms. One can only hope.
You stick with us Aussie girl. We are here to help and offer our experiences and hopefully some sound advice. You have come to a good place. The care and compassion of this group is overwhelming. What a group of special people...
Our country shared in the grief of Australia, when we all lost our beloved Steve Erwin. He was a United States icon, just as he was over in Australia. It's hard to watch a repeat of his shows and not cry my eyes out. I always felt it was better for him to pass quickly that get mauled by a croc, that I really thought would be his fate one day. His family remains in my prayers. He was an extraordinary human being. What a loss for mankind. He will never be forgotten.
Hope you will stay with us and become a part of our ever growing family. As Rena says, we will cry together, laugh together, rant together and have pity parties with each other. That's what families are for....
Best Wishes,
Heather
You do present with a very convincing case of classic MS, in MY opinion. Of course I am not a Neurologist and never claimed to be. But if it looks like a duck, quacks like a duck and walks like a duck, it IS a duck. A saying we have over here in the States. Maybe you have heard of it.
The pin ***** pain you have in the ends of your toes, sounds like something I experience periodically myself. It comes out of the blue and I will have several episodes per day, lasting a few seconds. It goes on for about a week, then it disappears as suddenly as it came on. I would suspect it's nerve pain. Just when I think I am over it, it will start again. Must be a mixed up signal from the brain down the spinal cord. I do have a lesion in my spine, so don't know if it's coming from that.
I have also experienced a burning pain in the morning, when I try to stand up. It feels like thousands of pins and needles in my feet when I try to stand up. It takes several minutes to go away, but it's a symptom I have frequently.
These dismissive doctor's I am sure, would not treat one of their family members, like they treat some of us. I once asked a doctor to pretend I was his mother sitting there with all my complaints, would he dismiss her or try to get to the bottom of my symptoms? He was totally silent. Speechless. When he regained his composure, he finally set up Nerve Conduction Studies, Electromyography (EMG) and found the source of my nerve pain. He said that he was actually glad that I put him in his place there in his office and made him think about the possibility that it WAS his mother sitting in front of him. After he admitted that, I left his practice and found another Neurologist. I hope it was a lession that he would remember, when he would dismiss patients and their symptoms. One can only hope.
You stick with us Aussie girl. We are here to help and offer our experiences and hopefully some sound advice. You have come to a good place. The care and compassion of this group is overwhelming. What a group of special people...
Our country shared in the grief of Australia, when we all lost our beloved Steve Erwin. He was a United States icon, just as he was over in Australia. It's hard to watch a repeat of his shows and not cry my eyes out. I always felt it was better for him to pass quickly that get mauled by a croc, that I really thought would be his fate one day. His family remains in my prayers. He was an extraordinary human being. What a loss for mankind. He will never be forgotten.
Hope you will stay with us and become a part of our ever growing family. As Rena says, we will cry together, laugh together, rant together and have pity parties with each other. That's what families are for....
Best Wishes,
Heather
Just popped back in before getting tea ready to see how everyone is going. Thanks for your posts, lovely to hear from everyone!
Wow, its just amazing how Doctors treat their patients sometimes, they are very dismissive, especially if your problems, symptoms and tests don't run like the text book says! That makes me so crazy. Everyone is an individual and no two people will have exactly the same symptoms, lesions, whatever....when will they ever get it?
I just might blow a fuse at my next appointment, one sneer, one "you must be a drunk" look or a comment like "how big is the glass you drink from", or, you must be a hypochondriac look will do it, I will make like my star sign ( Taurus ) and I will let him have it! That's a great idea Heather, umm, I wonder how he WOULD treat a relative if they presented with my problems, I'm sure he would leave no stone unturned. *****
I'm just a nobody on a disability pension with no money and am cluttering up his waiting room with my hypochondria every 6 months. I think I'm going to let him have it then find someone else.
Gotta go guys,
Catch you tomorrow
T B
Wow, its just amazing how Doctors treat their patients sometimes, they are very dismissive, especially if your problems, symptoms and tests don't run like the text book says! That makes me so crazy. Everyone is an individual and no two people will have exactly the same symptoms, lesions, whatever....when will they ever get it?
I just might blow a fuse at my next appointment, one sneer, one "you must be a drunk" look or a comment like "how big is the glass you drink from", or, you must be a hypochondriac look will do it, I will make like my star sign ( Taurus ) and I will let him have it! That's a great idea Heather, umm, I wonder how he WOULD treat a relative if they presented with my problems, I'm sure he would leave no stone unturned. *****
I'm just a nobody on a disability pension with no money and am cluttering up his waiting room with my hypochondria every 6 months. I think I'm going to let him have it then find someone else.
Gotta go guys,
Catch you tomorrow
T B
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