Aa
Lesions
I last posted in March in the MS Forum saying I did not have MS but was diagnosed with having Myelomalacia in my cervical spinal cord from my C2 to C6 levels caused from trauma from a car accident . I have 5 cm of scars in a longitude pattern on my dorsal column, so I do have bad neurological problems happening to my body. I take Gabapentin and Norspan 20 mg Patch for chronic pain.
I had a second opinion last month as I am getting worse and more symptoms. The Professor of Neuro told me that I did have lesions but they where not caused by a trauma injury but again agreed it was myelomalacia. The Professor is arranging to have tests done to determin what is causing the spinal cord to go soft and mushy then scar. How can one tell what a lesions is caused by on the MRI films? Do they look different if it was MS to Myelomalacia?
Symptoms over the past 4 years: (not in any order) electric shocks, feeling of water running down my leg, leg, arm, shoulder, wrist and torso jerks, no spinceter tone in vagina and anus, bladder weakness, leg weakness, fatigue, arm weakness and pain, calf pain, pins and needles on 1/2 side of my face, pins and needles from middle of my back running down too my bottom like a water fall. Lost eye sight twice for about 40 seconds each time. Had two days of vertigo, requiring medical attention. I was told by a After Hours Doctor it was a virus.
He said I have hyperreflexia and I am off to major hospital in early Dec as he said they need to find out why I am getting these lesions for. I earlier had MRI of brain plus full spine, it showed lesions on MRI with and without contrast. But when no lesions showed in the brain they did not do a contrast MRI. How do I get these guys to listen to me. Lately I feel my eyes are needing to be constantly squinted as they feel funny and painful behind my left eye and I have trouble with focus.
I just feel scared and I want to make sure they find out what is happening to me as I need treatment. If it is myelomalacia and not from the accident it mean I have have a spinal bleed or spinal stroke from what I have read. Please let me know your thoughts on what questions I should be asking these Doctors on my next visit.
I had a second opinion last month as I am getting worse and more symptoms. The Professor of Neuro told me that I did have lesions but they where not caused by a trauma injury but again agreed it was myelomalacia. The Professor is arranging to have tests done to determin what is causing the spinal cord to go soft and mushy then scar. How can one tell what a lesions is caused by on the MRI films? Do they look different if it was MS to Myelomalacia?
Symptoms over the past 4 years: (not in any order) electric shocks, feeling of water running down my leg, leg, arm, shoulder, wrist and torso jerks, no spinceter tone in vagina and anus, bladder weakness, leg weakness, fatigue, arm weakness and pain, calf pain, pins and needles on 1/2 side of my face, pins and needles from middle of my back running down too my bottom like a water fall. Lost eye sight twice for about 40 seconds each time. Had two days of vertigo, requiring medical attention. I was told by a After Hours Doctor it was a virus.
He said I have hyperreflexia and I am off to major hospital in early Dec as he said they need to find out why I am getting these lesions for. I earlier had MRI of brain plus full spine, it showed lesions on MRI with and without contrast. But when no lesions showed in the brain they did not do a contrast MRI. How do I get these guys to listen to me. Lately I feel my eyes are needing to be constantly squinted as they feel funny and painful behind my left eye and I have trouble with focus.
I just feel scared and I want to make sure they find out what is happening to me as I need treatment. If it is myelomalacia and not from the accident it mean I have have a spinal bleed or spinal stroke from what I have read. Please let me know your thoughts on what questions I should be asking these Doctors on my next visit.
Hi rose
the problem is there is no real treatment for me anyway even if they said MS tomorrow as I am too old to receive DMD now thats only for the young people who get diagnosed quickly.
HOWEVER, having said that my neurologist told me I can go into the MS RELAPSE CENTRE and have I.V. steroids now......BUT HE SAID just because you would be going to the MS RC doesnt mean you have MS.........................
I.V. steroids are constantly used for people suffering with MS with have RRMS and when in a relapse they can have I.V. steroids to help them get through.....
Now for me to have this treatment I would need to be in a relapse ...... and I keep telling my neuro that I havent had a relapse for 3 years now it is constant. YES my symptoms can have a period of being worse but I have never been totally symptom free.
I have done a lot of research on I.V. steroids now and yes they might make me feel better for a few weeks, but they can also have a bad effect on my general health, i.e. boost my blood pressure which is already high, and risk my bones....as one treatment would probably not be enough.....
I am in a quandary over it, but dont have to rush to make a decision but how can he offer me this if I am UNDIAGNOSED I dont get it........
I see you are in Australia. I think you have an amazing doctor and it isnt long now before your visit to the hospital. These spinal injurys are a nightmare for people as you never know when one starts and something else finishes. (My brother lives in queensland and he thinks the medical care is good in aussie not like our NHS ....).
IF i DIDNT have the ON 10 years ago I would give up and think it was just one of those things but you dont have ON and then have all the MS symptoms for nothing......
Its makes me laugh as in Neighbours I think it was Neighbours one of the ladies went blind and got diagnosed with MS almost immediately lol......yeh right as if.............
Funny enough my MS could have started a bit like Montel Williams.
Mine started in 1981 not long after a total hysterectomy and blood transfusions, but also I had to have many inoculations over the years because of travelling abroad and just before my symptoms really kicked in I had to have all the injections for Africa (yellow fever and many others WHICH is what happened to Montel Williams too.
Before I went to live in Kenya I had terrible pain in my right hip and loss of sensation in my right leg i was diagnosed with sciatica even though nothing came back on the xray. It lasted for 6 months even when I was in kenya but finally just went like it came.
When I came home in 1982 I had the pins and needles start in my left arm and trouble with my legs and fatique and was diagnosed with Myalgia cause unknown, but possible brucellosis which came back negative but they still thought I had that.
Anyway this attack lasted for about 1 year on and off and from that day I had waxes and wanes of different symptoms come and go .... which made it look as though I was some sort of nut job lol.
They were all either nerve pain......UTI.....frozen shoulder.....fatique...uti.....pins and needles....balance problems......then the eye problem.......then more and more symptoms ....
I have had everyone of these which is an overview symptom of MS :
Problems with vision
Muscle weakness
Spasticity (tight muscles due to increased muscle tone)
Fatigue
Impaired senses of pain, temperature, and touch
Pain (moderate to severe)
Lack of coordination
Tremor (shaking)
Depression
Sexual problems
Difficulty speaking
Vertigo (feeling that the room is spinning)
Bladder problems
Bowel problems
Euphoria (extreme happiness)
Difficulty thinking clearly.
My second opinion nuerolgoist told me that I couldnt have had MS as far back as 1981 as it would have presented itself now.....but DOH, it had just no one was looking....
Montel Williams well it took him nearly 20 years to get a diagnosis of MS This time scale is the same for me when I had my first real symptom in 2000 in Brazil.
So he had it for 20 years, still has it in 2010 and is no worse then I am at the moment.....
Its sooooooooo frustrating.
These doctors just dont get it......they are too lazy to be bothered to read through all our notes.
So now I have read montels story I feel better it cheered me up and helped me get back on the road to some sort of normalcy.
We have to be our own physicians and heal ourselves sometimes.... thanks for carind Mariaxxxxxxxxxxx
the problem is there is no real treatment for me anyway even if they said MS tomorrow as I am too old to receive DMD now thats only for the young people who get diagnosed quickly.
HOWEVER, having said that my neurologist told me I can go into the MS RELAPSE CENTRE and have I.V. steroids now......BUT HE SAID just because you would be going to the MS RC doesnt mean you have MS.........................
I.V. steroids are constantly used for people suffering with MS with have RRMS and when in a relapse they can have I.V. steroids to help them get through.....
Now for me to have this treatment I would need to be in a relapse ...... and I keep telling my neuro that I havent had a relapse for 3 years now it is constant. YES my symptoms can have a period of being worse but I have never been totally symptom free.
I have done a lot of research on I.V. steroids now and yes they might make me feel better for a few weeks, but they can also have a bad effect on my general health, i.e. boost my blood pressure which is already high, and risk my bones....as one treatment would probably not be enough.....
I am in a quandary over it, but dont have to rush to make a decision but how can he offer me this if I am UNDIAGNOSED I dont get it........
I see you are in Australia. I think you have an amazing doctor and it isnt long now before your visit to the hospital. These spinal injurys are a nightmare for people as you never know when one starts and something else finishes. (My brother lives in queensland and he thinks the medical care is good in aussie not like our NHS ....).
IF i DIDNT have the ON 10 years ago I would give up and think it was just one of those things but you dont have ON and then have all the MS symptoms for nothing......
Its makes me laugh as in Neighbours I think it was Neighbours one of the ladies went blind and got diagnosed with MS almost immediately lol......yeh right as if.............
Funny enough my MS could have started a bit like Montel Williams.
Mine started in 1981 not long after a total hysterectomy and blood transfusions, but also I had to have many inoculations over the years because of travelling abroad and just before my symptoms really kicked in I had to have all the injections for Africa (yellow fever and many others WHICH is what happened to Montel Williams too.
Before I went to live in Kenya I had terrible pain in my right hip and loss of sensation in my right leg i was diagnosed with sciatica even though nothing came back on the xray. It lasted for 6 months even when I was in kenya but finally just went like it came.
When I came home in 1982 I had the pins and needles start in my left arm and trouble with my legs and fatique and was diagnosed with Myalgia cause unknown, but possible brucellosis which came back negative but they still thought I had that.
Anyway this attack lasted for about 1 year on and off and from that day I had waxes and wanes of different symptoms come and go .... which made it look as though I was some sort of nut job lol.
They were all either nerve pain......UTI.....frozen shoulder.....fatique...uti.....pins and needles....balance problems......then the eye problem.......then more and more symptoms ....
I have had everyone of these which is an overview symptom of MS :
Problems with vision
Muscle weakness
Spasticity (tight muscles due to increased muscle tone)
Fatigue
Impaired senses of pain, temperature, and touch
Pain (moderate to severe)
Lack of coordination
Tremor (shaking)
Depression
Sexual problems
Difficulty speaking
Vertigo (feeling that the room is spinning)
Bladder problems
Bowel problems
Euphoria (extreme happiness)
Difficulty thinking clearly.
My second opinion nuerolgoist told me that I couldnt have had MS as far back as 1981 as it would have presented itself now.....but DOH, it had just no one was looking....
Montel Williams well it took him nearly 20 years to get a diagnosis of MS This time scale is the same for me when I had my first real symptom in 2000 in Brazil.
So he had it for 20 years, still has it in 2010 and is no worse then I am at the moment.....
Its sooooooooo frustrating.
These doctors just dont get it......they are too lazy to be bothered to read through all our notes.
So now I have read montels story I feel better it cheered me up and helped me get back on the road to some sort of normalcy.
We have to be our own physicians and heal ourselves sometimes.... thanks for carind Mariaxxxxxxxxxxx
Hi Maria,
I cannot believe that they are still saying no to you for having MS after saying both your eyes are positive. This must be upsetting that you are not getting treatment which of course could help you. My heart goes out to you as this is not fair that one has to suffer when you could be helped.
I know we could all have worse afflictions but dealing with the things we do everyday makes it tough anyway.
Rose Anne
I cannot believe that they are still saying no to you for having MS after saying both your eyes are positive. This must be upsetting that you are not getting treatment which of course could help you. My heart goes out to you as this is not fair that one has to suffer when you could be helped.
I know we could all have worse afflictions but dealing with the things we do everyday makes it tough anyway.
Rose Anne
Hi Jibs,
Yes, it is tough as I can see many others also have problems with Neurologists giving a dx. But what makes me upset is that we don't then have a choice of treatments if it is MS or some other problem and it is not being treated we only become worse.
I also believe mine started after the car accident from the pyhsical and emotional trauma my body went through.
I have see the Professor at his private practice and he is the one that is taking me through the large Hospital in Melbourne as a Public Patient. He does one day a month there and this does not happen usually and I know he wants to find out what the cause is. He could have just dragged this out and it would have cost me huge $$$ with tests done which I would have had to pay for. But going through the hospital system I dont have a pay anything at all. I just have to travel 5 hours by train to get there, which I am happy to do.
I just cannot understand with you having 20 lesions in your brain why the don't have any answers for you either. It makes me wonder if they use some people as research and let them go untreated just to see what happens to them? I hope I am wrong with this thought.
They have just told me I have lesions but I must ask how many there is. Thank you for taking the time to send me a post.
Rose Anne
Yes, it is tough as I can see many others also have problems with Neurologists giving a dx. But what makes me upset is that we don't then have a choice of treatments if it is MS or some other problem and it is not being treated we only become worse.
I also believe mine started after the car accident from the pyhsical and emotional trauma my body went through.
I have see the Professor at his private practice and he is the one that is taking me through the large Hospital in Melbourne as a Public Patient. He does one day a month there and this does not happen usually and I know he wants to find out what the cause is. He could have just dragged this out and it would have cost me huge $$$ with tests done which I would have had to pay for. But going through the hospital system I dont have a pay anything at all. I just have to travel 5 hours by train to get there, which I am happy to do.
I just cannot understand with you having 20 lesions in your brain why the don't have any answers for you either. It makes me wonder if they use some people as research and let them go untreated just to see what happens to them? I hope I am wrong with this thought.
They have just told me I have lesions but I must ask how many there is. Thank you for taking the time to send me a post.
Rose Anne
Hello and welcome,
I am sorry I missed sending this out sooner..I know thins can be frustrating and I too have reports of demylenation and gliosis and very suggestive of MS but not typical. I am in the wait and see game right now..I have 20 brain lesions and like MAria explained some may be hiding as my MRI's have been done on older machines....
I have various symptoms of parethesia, other sensory issues, pain, eye problems, even though they tell me eyes are perfect and right now neausea..BUT I also have migraines to make it more complicated.....
I know it's tough when we want answers and we do not get them...Hang in there...
Jibs
I am sorry I missed sending this out sooner..I know thins can be frustrating and I too have reports of demylenation and gliosis and very suggestive of MS but not typical. I am in the wait and see game right now..I have 20 brain lesions and like MAria explained some may be hiding as my MRI's have been done on older machines....
I have various symptoms of parethesia, other sensory issues, pain, eye problems, even though they tell me eyes are perfect and right now neausea..BUT I also have migraines to make it more complicated.....
I know it's tough when we want answers and we do not get them...Hang in there...
Jibs
Hi Roseanne, I know the feeling about gut feelings. You might well be right about it being MS it is just very difficult when you have a compromised spinal cord to work out what is actually attacking it.
I just warn you about google as I know from my own experience it can really cause anxiety and I think you have enough of that right now with all that is going on. x
I have pondered for some time what I could have and it always comes down to MS in the end.
My reasons for this are simple.
10 years ago now blimey where does the time go, I was in Brazil on holiday and went blind in one eye, just for a minute, then it happened again when I came home. The doctor dismissed it all as possible low blood pressure.........
After that I had terrible pain in my left eye real blurring and double vision.
Anyway over the few years I had things happen to me......
One of the tests I had came back positive in my visual evoked potential test and I was told it showed I had optical neuritis at the time in BOTH EYES.....
BUT still I get told I dont have MS. To have ON in BOTH eyes is a strong indicator of MS.
Every disease presents itself differently to the next person....I wish the neurologist would see that. And I have been told by my cousin in Italy who is a radiologist that the old MRI machines are a waste of time.....because the MS lesions can hide......and older people who get MS usually have it PPMS and lesions are not presented in the spinal cord very often. So there you go.....
Perhaps you have 2 things going on now. Its thought now that MS can be triggered by a stressful event, and perhaps the catalyst for that with you was the car accident. I believe mine was when my father died just before my holiday in Brazil.
I hope you get some answers in December. Keeping fingers crossed for you. Mariax
I just warn you about google as I know from my own experience it can really cause anxiety and I think you have enough of that right now with all that is going on. x
I have pondered for some time what I could have and it always comes down to MS in the end.
My reasons for this are simple.
10 years ago now blimey where does the time go, I was in Brazil on holiday and went blind in one eye, just for a minute, then it happened again when I came home. The doctor dismissed it all as possible low blood pressure.........
After that I had terrible pain in my left eye real blurring and double vision.
Anyway over the few years I had things happen to me......
One of the tests I had came back positive in my visual evoked potential test and I was told it showed I had optical neuritis at the time in BOTH EYES.....
BUT still I get told I dont have MS. To have ON in BOTH eyes is a strong indicator of MS.
Every disease presents itself differently to the next person....I wish the neurologist would see that. And I have been told by my cousin in Italy who is a radiologist that the old MRI machines are a waste of time.....because the MS lesions can hide......and older people who get MS usually have it PPMS and lesions are not presented in the spinal cord very often. So there you go.....
Perhaps you have 2 things going on now. Its thought now that MS can be triggered by a stressful event, and perhaps the catalyst for that with you was the car accident. I believe mine was when my father died just before my holiday in Brazil.
I hope you get some answers in December. Keeping fingers crossed for you. Mariax
Thank you for your reply. The reason I feel it is MS is two things. The radiologist impressions were: Demyelination is also considered, but the pattern is not typical, with exclusive you posterior column involvement unsual. I feel that if it is Myelomalacia that I would have had known I had a problem as its cause is from a bleed and you immediately become aware of a medical situation happening. (So I have read).
I don't want either actually, my concern is that both neuro's have told me I am very lucky not to be paralyzed by these lesions.
Yes, it is easy to google and google but I have my own interests here and I have sat on being told now for 8 months by the 1st Neuro that it was caused by the accident when Nueor 2 says it definately is not and this is why he says we need to find out the reason behind why it is happeneing for.
I suppose it is just my gut feeling that it may be MS.
Roseanne
Dear Binx,
Thank you for your blessing and kind thoughts. No, blood tests have been ordered for autoimmune, had thyriod tested three times which was negative. I only had a general eye examination done, so I will ask the Doctor's these things.
Thank you for this advice, I appreciate your thoughts.
Rose-Anne
Thank you for your blessing and kind thoughts. No, blood tests have been ordered for autoimmune, had thyriod tested three times which was negative. I only had a general eye examination done, so I will ask the Doctor's these things.
Thank you for this advice, I appreciate your thoughts.
Rose-Anne
Dr Binx has answered you very well...
May I ask why you think you could have MS?
The symptoms you are describing could be caused through the myelomalacia.
“cervical spondylotic myelophaty (myelomalacia) can cause variety of symptoms and some of them can last for years. Here are some: pain in neck, sub-scapular area, shoulder; sensory changes in lower extremities, motor weakness in the upper or lower extremities; numbness or parenthesis in the upper extremities; gait difficulties, like “spastic gait” that is broad-based, hesitant and jerky; upper extremity hypo- reflexia and atrophy, also bladder and bowel dysfunction may occur.”
Now may I admonish you gently lol. Reading on Google is not conducive to a relaxing life lol. You can come up with so much stuff to match that you are SCARING yourself silly. You are imagining all kinds of things now ....
I think from what you have said the doctor is looking at all angles with this. As to questions to ask is there much you can ask at the moment. I would wait until you see what happens in December.
You asked if the lesions look different if it was MS to Myelomalacia? I am sure they would be different but I am not a radiologist so cannot say for certain, but I am sure they do otherwise it would be totally impossible to diagnose anyone with anything lol.
So try not to get yourself too anxious about MS ok.
The problem with you eye sight could be so many things even anxiety can cause such problems EVEN fatigue. For example i find sometimes when I have overdone things my eyesight goes to shot but gets better when I have rested. I know that problems with spinal cord whether from Myelomalacia or MS can cause physical fatigue which can come with its own symptoms.
I would love to put your mind at rest but I know how hard it is when you have things going wrong and you feel that you are not getting full answers....but perhaps for now it is difficult for your doctor to confirm why the lesions are presenting more now and doesnt want to just give you any answer until he is sure.....
Big hugs try not to read too much stuff on Google it is bad for your health lol.xx
May I ask why you think you could have MS?
The symptoms you are describing could be caused through the myelomalacia.
“cervical spondylotic myelophaty (myelomalacia) can cause variety of symptoms and some of them can last for years. Here are some: pain in neck, sub-scapular area, shoulder; sensory changes in lower extremities, motor weakness in the upper or lower extremities; numbness or parenthesis in the upper extremities; gait difficulties, like “spastic gait” that is broad-based, hesitant and jerky; upper extremity hypo- reflexia and atrophy, also bladder and bowel dysfunction may occur.”
Now may I admonish you gently lol. Reading on Google is not conducive to a relaxing life lol. You can come up with so much stuff to match that you are SCARING yourself silly. You are imagining all kinds of things now ....
I think from what you have said the doctor is looking at all angles with this. As to questions to ask is there much you can ask at the moment. I would wait until you see what happens in December.
You asked if the lesions look different if it was MS to Myelomalacia? I am sure they would be different but I am not a radiologist so cannot say for certain, but I am sure they do otherwise it would be totally impossible to diagnose anyone with anything lol.
So try not to get yourself too anxious about MS ok.
The problem with you eye sight could be so many things even anxiety can cause such problems EVEN fatigue. For example i find sometimes when I have overdone things my eyesight goes to shot but gets better when I have rested. I know that problems with spinal cord whether from Myelomalacia or MS can cause physical fatigue which can come with its own symptoms.
I would love to put your mind at rest but I know how hard it is when you have things going wrong and you feel that you are not getting full answers....but perhaps for now it is difficult for your doctor to confirm why the lesions are presenting more now and doesnt want to just give you any answer until he is sure.....
Big hugs try not to read too much stuff on Google it is bad for your health lol.xx
dear rose_anne,
i am so sorry you are going through all of what you described above. i understand how scary it can be to face a nameless and faceless foe under these circumstances. it's just terrible and my heart goes out to you.
have you ever had a rheumatology workup? from what i have learned along the course of my own journey, there are a few autoimmune disorders that can cause inflammation in the spine and neuro symptoms, as well as visual disturbances. you may benefit from having that ruled out??
in addition to your pursuit of additional opinions from the major hospital, i might also try to get in with a neuro-ophthalmologist to get your eyes checked out. a regular optometrist won't do--make sure it's an M.D. with a special focus on neuro.
please keep us posted. i am sure others will chime in with other suggestions for you.
blessings,
binx
i am so sorry you are going through all of what you described above. i understand how scary it can be to face a nameless and faceless foe under these circumstances. it's just terrible and my heart goes out to you.
have you ever had a rheumatology workup? from what i have learned along the course of my own journey, there are a few autoimmune disorders that can cause inflammation in the spine and neuro symptoms, as well as visual disturbances. you may benefit from having that ruled out??
in addition to your pursuit of additional opinions from the major hospital, i might also try to get in with a neuro-ophthalmologist to get your eyes checked out. a regular optometrist won't do--make sure it's an M.D. with a special focus on neuro.
please keep us posted. i am sure others will chime in with other suggestions for you.
blessings,
binx
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