Aa
Recently diagnosed MS
I am a 40 Yr old male and have been diagnosed with MS last week.
It started in March with a weird sensation in my stomach, i went to the doctors and was told it was probably a virus and it would go away. This weird feeling seemed to then spread to my pelvic area, both legs and both feet. It was a loss of sensation or a numbness.I took myself off to hospital and sat in there for 7 hours while they did various tests but they offered no explainations and seemed confused that i was in no pain. The following week i was booked in for an MRI scan , lumbar and thorasic - the results of this scan showed i had two slipped discs in the thorasic spine.I was told this was the cause of my symtoms as the protruding discs were putting pressure on my spinal cord. I started physio therapy for my back and the feeling returned to my legs and feet. The numb feeling then seemed to move to my chest area and my physio said something wasn't right and spoke to my consultant who arranged a further MRI scan on my neck and head - the results of this scan showed scarring on my neck. The consultant said this was consistant with MS and booked me in for a lumbar pucture to confirm. The lumbar pucture procedure was OK but i was off my feet for a week and the results of that test was a raised protein level which again i am told is consistant with MS. The consultant did however say that this was not a fefinitive answer but i have been clinically diagnosed with MS.
I don't understand why this is not a definitive answer and if it is MS do i have to tell insuarance companies for life insuarance, travel and car.
My symptoms have eased now but i have some numbness on my stomach area and the balls of my feet feel slightly strange. I am seeing the consultant again in 3 weeks time.
It started in March with a weird sensation in my stomach, i went to the doctors and was told it was probably a virus and it would go away. This weird feeling seemed to then spread to my pelvic area, both legs and both feet. It was a loss of sensation or a numbness.I took myself off to hospital and sat in there for 7 hours while they did various tests but they offered no explainations and seemed confused that i was in no pain. The following week i was booked in for an MRI scan , lumbar and thorasic - the results of this scan showed i had two slipped discs in the thorasic spine.I was told this was the cause of my symtoms as the protruding discs were putting pressure on my spinal cord. I started physio therapy for my back and the feeling returned to my legs and feet. The numb feeling then seemed to move to my chest area and my physio said something wasn't right and spoke to my consultant who arranged a further MRI scan on my neck and head - the results of this scan showed scarring on my neck. The consultant said this was consistant with MS and booked me in for a lumbar pucture to confirm. The lumbar pucture procedure was OK but i was off my feet for a week and the results of that test was a raised protein level which again i am told is consistant with MS. The consultant did however say that this was not a fefinitive answer but i have been clinically diagnosed with MS.
I don't understand why this is not a definitive answer and if it is MS do i have to tell insuarance companies for life insuarance, travel and car.
My symptoms have eased now but i have some numbness on my stomach area and the balls of my feet feel slightly strange. I am seeing the consultant again in 3 weeks time.
Hello my name is Mike. I have not been dx'd just yet. my problems started with numbness in my arms and legs. I had surgery to correct a disk herniated inward to the point of nearly severing my cord. I was fused at c2,3,4. Six months later I was cut on again and fused in c5,6,7. That was nearly 3 years ago. I still have a lot of numbness in my extrermities. I too have a scar in my cord that is being carefully watched. not sure where it is from. Seems all the symptoms are there, nothing to prove with tests. LP was negative. Last MRI of brain was clear. I am on neurotin, and lycira. MS doc feels it may be unpresented MS just watching and waiting. Here on the fourm I am a "limbo lander"
This past January I came down with double vision. I have been fighting it since. Jury still out. calling it MG (Myasthenia Gravis) Another nerve/muscle issue. Seems I have them all over.
Welcome to one of the best groups you will ever know. This group is the greatest support. Seems everyone can relate. Every person I have met here I can really call friend and I have not been here very long at all. I look forward to speaking with you more. As SL said men like us are in the minority. Glad to see you hear . Sorry it was for such reasons.
Welcome,
Mike
This past January I came down with double vision. I have been fighting it since. Jury still out. calling it MG (Myasthenia Gravis) Another nerve/muscle issue. Seems I have them all over.
Welcome to one of the best groups you will ever know. This group is the greatest support. Seems everyone can relate. Every person I have met here I can really call friend and I have not been here very long at all. I look forward to speaking with you more. As SL said men like us are in the minority. Glad to see you hear . Sorry it was for such reasons.
Welcome,
Mike
A lesion is a scar, essentially. They show as a white area on the MRI. Symptoms do change on a daily basis, for me - something different every day!
Thanks for the welcome everyone.
It's nice to know i am not on my own.
To answer some of your questions :
The MRI of my brain did not show any lesions. The only lesion found was on my neck but my consultant did not call it a lesion - he called it scarring.I think that is the same thing anyway.I'm not sure if it was in the brain stem or not.On the actual scan it showed up as a small area that was whiter than it should have been.
All that has been said about my spinal tap was that it showed a raised protein level.There was no mention of O banding - i will ask this question when i next see him next and also confirm that there are no further areas of scarring.
My symptoms seem quite mild but they do seem to change slightly on a daily basis - is this normal ?
Once again thanks to everyone for making me feel welcome.
Mr_G
It's nice to know i am not on my own.
To answer some of your questions :
The MRI of my brain did not show any lesions. The only lesion found was on my neck but my consultant did not call it a lesion - he called it scarring.I think that is the same thing anyway.I'm not sure if it was in the brain stem or not.On the actual scan it showed up as a small area that was whiter than it should have been.
All that has been said about my spinal tap was that it showed a raised protein level.There was no mention of O banding - i will ask this question when i next see him next and also confirm that there are no further areas of scarring.
My symptoms seem quite mild but they do seem to change slightly on a daily basis - is this normal ?
Once again thanks to everyone for making me feel welcome.
Mr_G
> I don't understand why this is not a definitive answer and if it is MS do i have to tell insuarance companies for life insuarance, travel and car.
Well, nobody here can tell you why that isn't a definitive answer. We're all confused ourselves! How can somebody show up with all the signs of MS, yet not be diagnosed? Or be told that they have MS, but because they have no symptoms, they won't be prescribed the drugs to prevent progression?
MS is still a 'new' disease, in my oh-so-humble opinion. We know very little about how it works. We know a little bit - that axons are severed, that the myelin is destroyed, and that the destruction tends to be along vascular paths - but not why people have MS, or how to stop the disease.
What I can tell you is that you're probably in the category of 'Clinically Isolated Syndrome.' This means that you've had one attack that's clinically documented, and that you show the symptoms of MS. With your positive LP, that means MS. All the research (funded by the drug companies, of course) says that if you start taking one of the DMDs (copaxone, betaseron) that you'll have a better chance of avoiding damage in the future.
Do you have to tell the insurance company? Not as far as I know. I haven't told anybody except my employer and my family. If I were you, I would take steps with my current employer to make sure you have long-term disability benefits, just in case the disease progresses to the point where you can no longer work. But as somebody said, with mainly sensory symptoms, the disease course tends to be benign.
> from those that you will soon call your friends.
Laughing evilly... Well, we hope so! Call us anything you like!
Well, nobody here can tell you why that isn't a definitive answer. We're all confused ourselves! How can somebody show up with all the signs of MS, yet not be diagnosed? Or be told that they have MS, but because they have no symptoms, they won't be prescribed the drugs to prevent progression?
MS is still a 'new' disease, in my oh-so-humble opinion. We know very little about how it works. We know a little bit - that axons are severed, that the myelin is destroyed, and that the destruction tends to be along vascular paths - but not why people have MS, or how to stop the disease.
What I can tell you is that you're probably in the category of 'Clinically Isolated Syndrome.' This means that you've had one attack that's clinically documented, and that you show the symptoms of MS. With your positive LP, that means MS. All the research (funded by the drug companies, of course) says that if you start taking one of the DMDs (copaxone, betaseron) that you'll have a better chance of avoiding damage in the future.
Do you have to tell the insurance company? Not as far as I know. I haven't told anybody except my employer and my family. If I were you, I would take steps with my current employer to make sure you have long-term disability benefits, just in case the disease progresses to the point where you can no longer work. But as somebody said, with mainly sensory symptoms, the disease course tends to be benign.
> from those that you will soon call your friends.
Laughing evilly... Well, we hope so! Call us anything you like!
I too am sorry for what has brought you here but everyone is right when they say you are among friends.
I was DX 2 yrs ago with MS and was lucky like you to get an early DXs. My prob started with numbness on my left side from my waist down to my foot. I too so far have only had sensory symptoms. I have had some pain but not really sure at this point if it is related to the MS. I was on Copaxone only for a few months before I got pregnant. It's been over a yr since I have been on it and come next month after I see a new neuro I am sure that I will be back on it.
That's my story in a nutshell. I hope that since you have been clinically dx that you continue to get some more answers. Why they haven't talked to you about starting you on meds to slow the progression? My neuro was not waiting for me to have a 2nd attack before starting me on copaxone.
Welcome and hope you'll stick around. We are all here for one another!
Be well!
Debra
I was DX 2 yrs ago with MS and was lucky like you to get an early DXs. My prob started with numbness on my left side from my waist down to my foot. I too so far have only had sensory symptoms. I have had some pain but not really sure at this point if it is related to the MS. I was on Copaxone only for a few months before I got pregnant. It's been over a yr since I have been on it and come next month after I see a new neuro I am sure that I will be back on it.
That's my story in a nutshell. I hope that since you have been clinically dx that you continue to get some more answers. Why they haven't talked to you about starting you on meds to slow the progression? My neuro was not waiting for me to have a 2nd attack before starting me on copaxone.
Welcome and hope you'll stick around. We are all here for one another!
Be well!
Debra
Hi, it is nice to meet you, and welcome to the forum. I do not have an MS dx as of now! For two years I have been dx with ADEM, and MS mimic, and have been watched with repeat MRI's for new lesions on the brain,( I have 10 from the first attack), or a second attack! So far nothing new!
I presented with numbness, not in my extremities, but in my eyes and head. My presenting symptoms were all sensory too, but mainly involved vision changes and dysfunction. Although I have had some transient numbness and tingling in the back of my caves and the sides of my forearms that comes and goes and only last for about 30 min and then is gone! And I had some Virtigo and some cognitive dysfunction.
You said that the scan of your neck showed some scars, and I was wondering if it was in the back of the neck in the brainstem, and if they said it was lesions? Also did your brain MRI show any white matter lesions?
My neuro seems to be waiting for evidence of a second attack in space and time. I also had the spinal tap which was netative and showed no O banding. You said yours showed some high protien, but did they mention if it showed any O banding?
I am glad that you have come our way, and you are among friends here who will try to help you along your way through this hard time!
~Santana~
I presented with numbness, not in my extremities, but in my eyes and head. My presenting symptoms were all sensory too, but mainly involved vision changes and dysfunction. Although I have had some transient numbness and tingling in the back of my caves and the sides of my forearms that comes and goes and only last for about 30 min and then is gone! And I had some Virtigo and some cognitive dysfunction.
You said that the scan of your neck showed some scars, and I was wondering if it was in the back of the neck in the brainstem, and if they said it was lesions? Also did your brain MRI show any white matter lesions?
My neuro seems to be waiting for evidence of a second attack in space and time. I also had the spinal tap which was netative and showed no O banding. You said yours showed some high protien, but did they mention if it showed any O banding?
I am glad that you have come our way, and you are among friends here who will try to help you along your way through this hard time!
~Santana~
Welcome to the forum. I'm sorry for what brought you here, but it seems like you had a quick road to a diagnosis!
I'm also wondering if you showed any brain lesions.
I think your doc has diagnosed you with a "Clinically Isolated Syndrome". It is recommended that DMDs be started with a CIS, but neuros vary on this. I'm guessing that your neuro is waiting for a second episode to definitely diagnose you and start you on the drugs to try to slow down progression.
I too have disc issues and it muddies up the water a bit as far as symptoms go. Sometimes it is very difficult to determine what is from the MS and what is from the disc.
Again, I want to welcome you to our little "family".
Take care, Pat :)
I'm also wondering if you showed any brain lesions.
I think your doc has diagnosed you with a "Clinically Isolated Syndrome". It is recommended that DMDs be started with a CIS, but neuros vary on this. I'm guessing that your neuro is waiting for a second episode to definitely diagnose you and start you on the drugs to try to slow down progression.
I too have disc issues and it muddies up the water a bit as far as symptoms go. Sometimes it is very difficult to determine what is from the MS and what is from the disc.
Again, I want to welcome you to our little "family".
Take care, Pat :)
Hi and Welcome to the MS Forum. You are greeted here with open arms, from those that you will soon call your friends. I am sorry that your medical problems are what brought you here. Very sorry.
What did the MRI if your head (brain) show? Are there any lesions in the brain?
From what you are describing, you seem to have alot of sensory symptoms. Mr. G. this is actually good news. Starting a course of MS with sensory symptoms may actually mean a milder course down the road.
Since you have some bulging dics, I would suggest to you that some of your symptoms are indeed coming from the troublesome dics. I have six in my spine as well. My Neurologist thinks that any symptoms coming from them are separate and apart from my course of MS.
I have 12 lesions in the brain and one in the spinal cord, with definite relapses and remissions. Are you having anything similar to that?
I hope that you will tell us more about your course with these symptoms. I am most interested to learn more about what is going on with you. It helps us all to learn from other's experiences.
Again welcome. Pull up a chair and join in on one of the greatest groups on the Internet.
Heather
What did the MRI if your head (brain) show? Are there any lesions in the brain?
From what you are describing, you seem to have alot of sensory symptoms. Mr. G. this is actually good news. Starting a course of MS with sensory symptoms may actually mean a milder course down the road.
Since you have some bulging dics, I would suggest to you that some of your symptoms are indeed coming from the troublesome dics. I have six in my spine as well. My Neurologist thinks that any symptoms coming from them are separate and apart from my course of MS.
I have 12 lesions in the brain and one in the spinal cord, with definite relapses and remissions. Are you having anything similar to that?
I hope that you will tell us more about your course with these symptoms. I am most interested to learn more about what is going on with you. It helps us all to learn from other's experiences.
Again welcome. Pull up a chair and join in on one of the greatest groups on the Internet.
Heather
Hi SL
Thanks for your reply
Yes March must be a bad month - i have been off work since then , going back on Monday. Not looking forward to that!
I have been told that there will be no on going treatment at the moment and that i may not get another attack for years ( hopefully )
But because they know what it is now if and when i get another attack they can treat it with some strong steroids and alleviate some of the symptoms.
All i suffered with is numbness - no pain whatever , which i am grateful for.
Some days the sensations are worse that other days and i have felt it in my little fingers too. Is this normal - for it to move around ?
Hope you are feeling OK . Do you have any on going symptoms ?
Mr_G
Thanks for your reply
Yes March must be a bad month - i have been off work since then , going back on Monday. Not looking forward to that!
I have been told that there will be no on going treatment at the moment and that i may not get another attack for years ( hopefully )
But because they know what it is now if and when i get another attack they can treat it with some strong steroids and alleviate some of the symptoms.
All i suffered with is numbness - no pain whatever , which i am grateful for.
Some days the sensations are worse that other days and i have felt it in my little fingers too. Is this normal - for it to move around ?
Hope you are feeling OK . Do you have any on going symptoms ?
Mr_G
Hey Mr. G!
Welcome!
So, your story here seems classic, but you really got lucky when that physio sent you for further tests. I'm SL and I was dx'd last year with MS. My problems started last year in March too - bad month..lol
I don't understand. MS "is" a clinical diagnosis, plain and simple. The test that were run on you would only support that diagnosis. Did they talk to you about disease modifying meds?
That should of been brought up by your Neuro.
I'm glad you came our way, then men (which are in the minority here ha/ha) will be glad you have come along.
How are you feeling now? Did you get any other symptoms besides the numbness?
talk to you soon,
SL
Welcome!
So, your story here seems classic, but you really got lucky when that physio sent you for further tests. I'm SL and I was dx'd last year with MS. My problems started last year in March too - bad month..lol
I don't understand. MS "is" a clinical diagnosis, plain and simple. The test that were run on you would only support that diagnosis. Did they talk to you about disease modifying meds?
That should of been brought up by your Neuro.
I'm glad you came our way, then men (which are in the minority here ha/ha) will be glad you have come along.
How are you feeling now? Did you get any other symptoms besides the numbness?
talk to you soon,
SL
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