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Has anyone experienced my symptoms?
Hello, I'm33 year old male, I never had much illness and I rarely visited physicians till now. but about a month ago I suddenly had blurred vision(no pain) I noticed it while rubbing my right eye in front of a computer monitor, I immediately saw an ophthalmologist and my visual acuity was 5/10. his first diagnose was CSR and it took about two weeks that after seeing 3 different ophthalmologist and different tests they asked me to do a VEP. in VEP my left eye had 109mSec delay and right eye had 119 mSec Delay. they diagnosed me with retrobulbar neuritis. and send me for MRI. in my brain T2 MRI, the radiologist reports that everything is normal. one neurologist that I visited yesterday said that I have two plaques in corpus collasum. he said there is no lesion visible on my optic nerve. and he said that there is 80% chance that I have MS. Now the problem is about 5 days ago I suddenly felt headache and chill and I had involuntary movements all over my body. both hands, feet, especially tongue and mouth. involuntary movements in all parts of my body were slow slight but quite noticable (e.g. my thumb moved about 1Cm and came back to its initial state and remained silent and then after ~5 minutes my heel and after another ~5 minutes my belly muscle,...) but movements of mouth and tongue were much more rapid and like tremor still I think not too much that can be noticed by another observing person but the important point was that unlike other parts tongue and mouth had continues moves after tomorrow movements were still present but much weaker. 3 days ago I suddenly woke up in middle of night(2AM) and I had more powerful movements. I slept and tomorrow I the movements were much weaker. Even now I have such movements but weaker than initial symptoms. I told it to my neurologist and he said it can't be related to MS because it involves many limbs and all started at once. I haven't received corton for optic neuritis problem. In fact I didn't used any medications except vitamins. Please dose anybody with known MS condition is familiar with my symptoms. Do I have MS? what should I do? neurologist told me it relates to my anxiety but I'm not that mush anxious to have such vivid shaking symptoms.
Thank you very much
Thank you very much
Hi,
LuLu is a wise and wonderful source of Information. She and all the others gave you some very good suggestions.
It's hard Not to be scared when you are dealing with so much "UNKNKOWN" stuff. But it is so important for you to realize you are Not Alone, this is the best support group ever!!!, I would be lost with out each and every single one of them.
Please hang in there, remember to breath, and try to not let stress get you down, Stress is the worse enemy we have, next to Doctors who close their minds and only believe what they read in old medical books. They are coming up with new treatments and test all the time, not like it was in the 70's and 80's.
Lulu is so right, if "they" know nothing else, "they" are all right when "they" say MS won't kill you.
Don't give up, and allow us to become your support group....{{{{~!~}}}
LuLu is a wise and wonderful source of Information. She and all the others gave you some very good suggestions.
It's hard Not to be scared when you are dealing with so much "UNKNKOWN" stuff. But it is so important for you to realize you are Not Alone, this is the best support group ever!!!, I would be lost with out each and every single one of them.
Please hang in there, remember to breath, and try to not let stress get you down, Stress is the worse enemy we have, next to Doctors who close their minds and only believe what they read in old medical books. They are coming up with new treatments and test all the time, not like it was in the 70's and 80's.
Lulu is so right, if "they" know nothing else, "they" are all right when "they" say MS won't kill you.
Don't give up, and allow us to become your support group....{{{{~!~}}}
>>> @jensequitur, will you please explain exactly how your involuntary movements started? I mean do they started together?
I first started noticing fasciculations in my face, especially my lower lip. It kept trembling, especially when I was stressed. So naturally I thought it was just stress. Then my eyelid started twitching on the right side. Then my lower lid. So my twitching was centered in the face, especially the stuff connected to the 8th cranial nerve. All this twitching was going on while other symptoms were happening, so by the time I'd experienced a LOT of twitching, I already knew that I had MS. I've had twitching in other areas too, at different times - but it seems to return to the same places, instead of jumping around at random. My left tricep seems to be a favorite, and my right thumb.
I was diagnosed in early 2007, but I was pretty sure I had MS by the end of 2006. I had a major flare in January of 07. The neuro found one lesion (there are more, but it's the only one that counted in his book) and decided on that basis to give me a spinal tap. I came back with five oligoclonal bands, and that plus my long list of symptoms was enough to diagnose me.
The rhythmic movement you describe in your belly muscles sounds like myoclonus. I've had that in my abdomen, my legs, and my spine. It also sounds like you're having problems with muscle weakness and fine motor control.
However, I can tell that you're concentrating way too hard on the specifics of your symptoms! It sounds like you're used to everything working the way it's supposed to, which befits your engineering career. What you're going to have to get used to (if you do have MS) is that your body is going to do some unexpected things. You may have twitching in one or more of your muscles, or problems controlling your hands, or myoclonus in your limbs, and it won't be something you can predict. I would definitely tell the neuro about your symptoms, but avoid the details - all he needs to know is that you have problems aiming at the keys on the keyboard, or that your muscles are contracting and relaxing involuntarily.... etc.
MS is not the end of the world. It doesn't mean that God has it in for you. If he did, he would have it in for 1 out of 100 Americans, and that just doesn't sound logical. It's just life - something in our environment, either viral or environmental, removed a barrier to something that encourages progressive neurological damage. I've gotten to the point where I don't like it, but I can live with it. I just wish they would figure out the cause, so we can prevent future generations from developing MS - because this seems to be reaching epidemic proportions.
I first started noticing fasciculations in my face, especially my lower lip. It kept trembling, especially when I was stressed. So naturally I thought it was just stress. Then my eyelid started twitching on the right side. Then my lower lid. So my twitching was centered in the face, especially the stuff connected to the 8th cranial nerve. All this twitching was going on while other symptoms were happening, so by the time I'd experienced a LOT of twitching, I already knew that I had MS. I've had twitching in other areas too, at different times - but it seems to return to the same places, instead of jumping around at random. My left tricep seems to be a favorite, and my right thumb.
I was diagnosed in early 2007, but I was pretty sure I had MS by the end of 2006. I had a major flare in January of 07. The neuro found one lesion (there are more, but it's the only one that counted in his book) and decided on that basis to give me a spinal tap. I came back with five oligoclonal bands, and that plus my long list of symptoms was enough to diagnose me.
The rhythmic movement you describe in your belly muscles sounds like myoclonus. I've had that in my abdomen, my legs, and my spine. It also sounds like you're having problems with muscle weakness and fine motor control.
However, I can tell that you're concentrating way too hard on the specifics of your symptoms! It sounds like you're used to everything working the way it's supposed to, which befits your engineering career. What you're going to have to get used to (if you do have MS) is that your body is going to do some unexpected things. You may have twitching in one or more of your muscles, or problems controlling your hands, or myoclonus in your limbs, and it won't be something you can predict. I would definitely tell the neuro about your symptoms, but avoid the details - all he needs to know is that you have problems aiming at the keys on the keyboard, or that your muscles are contracting and relaxing involuntarily.... etc.
MS is not the end of the world. It doesn't mean that God has it in for you. If he did, he would have it in for 1 out of 100 Americans, and that just doesn't sound logical. It's just life - something in our environment, either viral or environmental, removed a barrier to something that encourages progressive neurological damage. I've gotten to the point where I don't like it, but I can live with it. I just wish they would figure out the cause, so we can prevent future generations from developing MS - because this seems to be reaching epidemic proportions.
Hello,
Thanks a lot all of you, In the past, I used to say to my relatives that to prevent a weakness in one of your body functionalities you have to use that functionality a lot. Of course I'm not a physician but It makes sense to me. you have seen when healthy astronauts came back to earth due to lack of gravity their feet become so weak that they can't walk and they are transferred by a wheelchair. I stretched this concept a bit. and for example for relatives who complained about loss of memory I recommend them to engage in mental works like learning a new foreign language to help them preserve or even improve their memory. In some cases they had followed my recommendation and they think it works. Now in one of sessions that I had with my neurologist I brought this up and I asked him can it prevent symptoms. I said for example karate( I have yellow belt in karate and Judo) that has many katas( a set of movements and techniques that have to be learnt and performed from memory and can be performed individually or in a group) that involves movements that need balance. many techniques of karate need balance, power, relaxation. relaxation and concentration methods especially introduced in more advanced levels.I don't want to learn karate to become an Olympics champion but I just want to prevent loss of functionality with every possible method. My neurologist was not as enthusiastic as me and he said that I should not make myself tired and especially I should avoid overheating. I also read in one site that people that are sensitive to heat can continue a sport but without spending too much energy and they can have a spray of water to keep themselves cool during activity. He recommended swimming which I also think is a nice sport. I also was planning to restart playing keyboard(I can play keyboard some) which needs very exact control of fingers and hand movement.
Now I want to ask anyone of you: have you find a special activity(regular) has prevented a symptom from happening to you?
@jensequitur,
will you please explain exactly how your involuntary movements started? I mean do they started together? I mean do they started in your face, hand and stomach muscles at the same time or just one limb had been affected at a time?
and do you have clinical criteria for MS?
I definitely have fasciculation(small mascle twitchesbut they are relatively rare) and also I have some shaking, for example it was for a few days that my left arm muscle had shaking(rhythmic movement with frequency of about 2 times in a second that involves only muscle without moving of the limb and each episodes lasts between 3-10min and about 3-10 episodes a day), from yesteday that I posted my message, my arm muscle was completely quiet and my belly muscle started shaking (again rhythmic movement with frequency of about 2 times in a second and each episodes lasts between 3-10min).
the intention involuntary movement that I experience is not tremor(I mean it is not rhythmic, for example when I command my hand to go left and press a key in keyboard sometimes(rarely) it goes left but instead of stopping at key X it continues to move to the next key Z and I have to again turn it back to key X.
@ Opie
Thanks a lot Opie. It is amazing how you turn a crisis into an opportunity. I mean you had the memory problem and you used it to teach to your students math concepts in a more clear way. I also had been an instructor for a short period of time but its money was not big enough so I started my own business but I know many instructors bring with them some notes so they do not forget any subject. I think if you again decided o become an instructor, you can type some notes and print technical terms in bold so you do not forget any technical term. About god, I'm not saying that he is making me ill, he can kill me instantly if he wants. I have been saved by him in some occasions before. but surely if I'm ill he can cure me! believing in god is really an assurance. In life sometimes events happen that no human can do anything about it. It is horrible in that moment if someone do not believe in god. one feels completely helpless, it is a terrible feeling. I had been in situations that could go very wrong and it was extremely odd what that actually happened I mean it is extremely odd if it has happened by chance and it looks like that someone outside this world has helped me. I'm trying to know the god better and have better relationship with him but I prefer to have better relationship with a healthy body.
Take care all of you,
Engineer
Thanks a lot all of you, In the past, I used to say to my relatives that to prevent a weakness in one of your body functionalities you have to use that functionality a lot. Of course I'm not a physician but It makes sense to me. you have seen when healthy astronauts came back to earth due to lack of gravity their feet become so weak that they can't walk and they are transferred by a wheelchair. I stretched this concept a bit. and for example for relatives who complained about loss of memory I recommend them to engage in mental works like learning a new foreign language to help them preserve or even improve their memory. In some cases they had followed my recommendation and they think it works. Now in one of sessions that I had with my neurologist I brought this up and I asked him can it prevent symptoms. I said for example karate( I have yellow belt in karate and Judo) that has many katas( a set of movements and techniques that have to be learnt and performed from memory and can be performed individually or in a group) that involves movements that need balance. many techniques of karate need balance, power, relaxation. relaxation and concentration methods especially introduced in more advanced levels.I don't want to learn karate to become an Olympics champion but I just want to prevent loss of functionality with every possible method. My neurologist was not as enthusiastic as me and he said that I should not make myself tired and especially I should avoid overheating. I also read in one site that people that are sensitive to heat can continue a sport but without spending too much energy and they can have a spray of water to keep themselves cool during activity. He recommended swimming which I also think is a nice sport. I also was planning to restart playing keyboard(I can play keyboard some) which needs very exact control of fingers and hand movement.
Now I want to ask anyone of you: have you find a special activity(regular) has prevented a symptom from happening to you?
@jensequitur,
will you please explain exactly how your involuntary movements started? I mean do they started together? I mean do they started in your face, hand and stomach muscles at the same time or just one limb had been affected at a time?
and do you have clinical criteria for MS?
I definitely have fasciculation(small mascle twitchesbut they are relatively rare) and also I have some shaking, for example it was for a few days that my left arm muscle had shaking(rhythmic movement with frequency of about 2 times in a second that involves only muscle without moving of the limb and each episodes lasts between 3-10min and about 3-10 episodes a day), from yesteday that I posted my message, my arm muscle was completely quiet and my belly muscle started shaking (again rhythmic movement with frequency of about 2 times in a second and each episodes lasts between 3-10min).
the intention involuntary movement that I experience is not tremor(I mean it is not rhythmic, for example when I command my hand to go left and press a key in keyboard sometimes(rarely) it goes left but instead of stopping at key X it continues to move to the next key Z and I have to again turn it back to key X.
@ Opie
Thanks a lot Opie. It is amazing how you turn a crisis into an opportunity. I mean you had the memory problem and you used it to teach to your students math concepts in a more clear way. I also had been an instructor for a short period of time but its money was not big enough so I started my own business but I know many instructors bring with them some notes so they do not forget any subject. I think if you again decided o become an instructor, you can type some notes and print technical terms in bold so you do not forget any technical term. About god, I'm not saying that he is making me ill, he can kill me instantly if he wants. I have been saved by him in some occasions before. but surely if I'm ill he can cure me! believing in god is really an assurance. In life sometimes events happen that no human can do anything about it. It is horrible in that moment if someone do not believe in god. one feels completely helpless, it is a terrible feeling. I had been in situations that could go very wrong and it was extremely odd what that actually happened I mean it is extremely odd if it has happened by chance and it looks like that someone outside this world has helped me. I'm trying to know the god better and have better relationship with him but I prefer to have better relationship with a healthy body.
Take care all of you,
Engineer
About being you age and still single: I am married to an engineer. Two of my friends are as well. None of us were married before the age of 28. Some of the guys were alder than you. I have girl friends that are single engineers......Hang in there, one crices at a time :-)
Hi Engineer,
Like jensequitur I 'm no neurologist either. I am just a guy with MS. Yes I have learned a lot about MS and other diseases just from looking up every symptom I thought I had and being around Doctors and in the hospital so much.
To everyone I would say learn as much as you can without obsessing over it. Every now and then take a break from the message boards and spending every second thinking about being sick. Do something that you like to do before your symptoms showed up.
I do think you are on the right track but what I would say to you is find, if you have not already a neurologist that you really feel comfortable with and think they are looking out for you. Then together with that Doc plan where to go from here.
Now as to the interferons I have seen several things about when to start them if you have CIS as soon as possible is probably the best but don't freak out if you don't get on them in the next 3 months. I have also seen before the next attack or before being DX with MS...well that could be years. So again if your gut is telling you the Doc you are seeing is there for you, listen to what they say.....
opie74, Thank you for your testimony and not only saying it to Engineer but for me. It is helpful to my journey also. May God continue to bless you..
JJFL......
Like jensequitur I 'm no neurologist either. I am just a guy with MS. Yes I have learned a lot about MS and other diseases just from looking up every symptom I thought I had and being around Doctors and in the hospital so much.
To everyone I would say learn as much as you can without obsessing over it. Every now and then take a break from the message boards and spending every second thinking about being sick. Do something that you like to do before your symptoms showed up.
I do think you are on the right track but what I would say to you is find, if you have not already a neurologist that you really feel comfortable with and think they are looking out for you. Then together with that Doc plan where to go from here.
Now as to the interferons I have seen several things about when to start them if you have CIS as soon as possible is probably the best but don't freak out if you don't get on them in the next 3 months. I have also seen before the next attack or before being DX with MS...well that could be years. So again if your gut is telling you the Doc you are seeing is there for you, listen to what they say.....
opie74, Thank you for your testimony and not only saying it to Engineer but for me. It is helpful to my journey also. May God continue to bless you..
JJFL......
Hi, I am a fellow nerd. I am a 34 yr old female mathematician. I have a masters degree in theoretical mathematics. I was just dx with MS. I was told in October that I might have MS. I have verry few physical symptoms. Like you, me began in my eyes. Then my upper lip sagged on one side. Now from time to time, that entire side of my face saggs.
I can identify with the stress and spiritual upheaval that you are feeling. As serious left-brainers, we believe that we understand our relationship with God. I though that I did. My relationship with God was tested 2 yrs ago. Something completely unrelated to ms. What I did learn is that we don't to hold onto God, He has a grip on us. It is ok to be angry with Him for the situations in which we find ourselves. Just know that because he allowed something to happen does not mean that He caused it. Having the struggle 2 yrs ago changed my faith! For the better! I now understand things about God and my relationship to Him that I never could of before. It is making the adjustment to my MS Dx (Dec 22nd) much more bareable. God, I will give glory to you in my weakness!
One of the most shocking symptoms that I have is memory. I was an instructor at a college. (resigned 1 yr ago to rear my children) It is difficult to teach calculus when you can't think of the technical terms from the top of your head. But in my weakness, I found a gift. I was able to explain the difficult concepts of integration and differentation in terms that anyone could understand. I may have forgotten some of the words when the students asked, but they understod better than any class that I had ever had. I stopped relying on my intelligence and relied on my God-given gift as a teacher.
I wish that I could give you all of the medical answers, but I wil pray that God send you to the correct physicians, and that He give them insight into what is really going on in your body. In the mean time, take time to praise God for all of the wonderful things that he has given you in this life. It is difficult to STAY depressed when you are praising HIm.
Don't think that I am some kind of religious freak, I just know where you are because I have been there too. There is no ammount of encouragement from others that will help. Daily, you will struggle, and daily you are blessed. God will not test us above what we are able, but sometimes He allows us to go all the way to the breaking point to reach up and grab a hold onto Him.
Praying for you!
Opie
I can identify with the stress and spiritual upheaval that you are feeling. As serious left-brainers, we believe that we understand our relationship with God. I though that I did. My relationship with God was tested 2 yrs ago. Something completely unrelated to ms. What I did learn is that we don't to hold onto God, He has a grip on us. It is ok to be angry with Him for the situations in which we find ourselves. Just know that because he allowed something to happen does not mean that He caused it. Having the struggle 2 yrs ago changed my faith! For the better! I now understand things about God and my relationship to Him that I never could of before. It is making the adjustment to my MS Dx (Dec 22nd) much more bareable. God, I will give glory to you in my weakness!
One of the most shocking symptoms that I have is memory. I was an instructor at a college. (resigned 1 yr ago to rear my children) It is difficult to teach calculus when you can't think of the technical terms from the top of your head. But in my weakness, I found a gift. I was able to explain the difficult concepts of integration and differentation in terms that anyone could understand. I may have forgotten some of the words when the students asked, but they understod better than any class that I had ever had. I stopped relying on my intelligence and relied on my God-given gift as a teacher.
I wish that I could give you all of the medical answers, but I wil pray that God send you to the correct physicians, and that He give them insight into what is really going on in your body. In the mean time, take time to praise God for all of the wonderful things that he has given you in this life. It is difficult to STAY depressed when you are praising HIm.
Don't think that I am some kind of religious freak, I just know where you are because I have been there too. There is no ammount of encouragement from others that will help. Daily, you will struggle, and daily you are blessed. God will not test us above what we are able, but sometimes He allows us to go all the way to the breaking point to reach up and grab a hold onto Him.
Praying for you!
Opie
Engineer, I'm no neurologist, so I'm not an authority! But I've had a neurologist tell me that what I was experiencing wasn't MS, when it most certainly was, so take that information with a grain of salt. I think if you went back to your neurologist and told him that half the involuntary movement was in your arm muscle, he would be better able to diagnose the cause of the problem.
So are they fasciculations, or is it myoclonus?
So are they fasciculations, or is it myoclonus?
Hello,
@jensequitur,You said involuntary movements are part of MS. but the important thing about my symptoms is that these symptoms started suddenly(after I woke up from sleep a few weeks ago) and it was present in different limbs, hands, feet, trunk, face, neck. I immediately saw a neurologist and he said because all these symptoms started at once and in different limbs it can't be associated with MS. but now after a few weeks from the onset, I would say 60% of involuntary movement that I have is in my left arm muscle. I still have some fasciculations and myoclonus in other parts like hand fingers, belly muscles and chest muscles but they are sporadic and low in frequency of happening. the important point is the whole involuntary movement problem now has reduced to 10%-20% of its initial manifestation. neither of neurologists that I have seen till now have said that it could be a sign of MS.
@JJFL,
Do you think if heaven forbids, the first neurologist that examined me is right and in fact I had CIS and MS, then am I in the right track? I mean I'm planning to get another MRI in 3 months and compare it to current MRI and then my neurologist will judge should I take interferon or not. could it be too late? first neurologist asked me to get a lumbar puncture and if it was positive begin interferons immediately. I didn't, because as far as I understood it dose not give a definite diagnosis if it is positive or negative and MRI is a better criteria for having or not having MS besides it is not invasive as LP and has no possible side effect and also last neurologist also said at this stage it is not necessary. Also I'm not sure what will happen to me if I'm not having MS and start interferons.
Take care both of you.
Engineer
@jensequitur,You said involuntary movements are part of MS. but the important thing about my symptoms is that these symptoms started suddenly(after I woke up from sleep a few weeks ago) and it was present in different limbs, hands, feet, trunk, face, neck. I immediately saw a neurologist and he said because all these symptoms started at once and in different limbs it can't be associated with MS. but now after a few weeks from the onset, I would say 60% of involuntary movement that I have is in my left arm muscle. I still have some fasciculations and myoclonus in other parts like hand fingers, belly muscles and chest muscles but they are sporadic and low in frequency of happening. the important point is the whole involuntary movement problem now has reduced to 10%-20% of its initial manifestation. neither of neurologists that I have seen till now have said that it could be a sign of MS.
@JJFL,
Do you think if heaven forbids, the first neurologist that examined me is right and in fact I had CIS and MS, then am I in the right track? I mean I'm planning to get another MRI in 3 months and compare it to current MRI and then my neurologist will judge should I take interferon or not. could it be too late? first neurologist asked me to get a lumbar puncture and if it was positive begin interferons immediately. I didn't, because as far as I understood it dose not give a definite diagnosis if it is positive or negative and MRI is a better criteria for having or not having MS besides it is not invasive as LP and has no possible side effect and also last neurologist also said at this stage it is not necessary. Also I'm not sure what will happen to me if I'm not having MS and start interferons.
Take care both of you.
Engineer
Hi Engineer75,
Glad you found something useful in my post. I think you were right to be ' very doubtful that 2 neurological problems happen in a few weeks from each other 'I see your getting a thyroid hormone test It is the right thing to do to rule out all the other things it could be before saying it is MS.
You ask " in some of your MRIs no lesions were visible. I wonder by now do you know why? " Well the why, I don't know, the how I knew is that the MRI showed no visible lesions but the Evoked Potential test (or "evoked response") showed damage not visible on MRI ...This test measures the time it takes your brain to process a small electric shock (not bad) or other stimuli (light, for eyes and clicking noise for ears.)
I would call around to MRI centers and ask if they have a 3 Tesla machine. It will show more lesions, if they are their but they can still be missed even on these MRI's .
" Paroxysmal dyskinesia is a descriptive term for the most part. For example it’s like transverse myelitis…..it can be a disease in itself, but it is also a SYMPTOM of MS as can be the dyskinesias." This is what my PA at USF said after I asked her if I could tell Docs. that I have this problem. So yes one can have Paroxysmal dyskinesias without having MS.
Sorry to hear about your relative...the infections were mostly the result of my bladder not working right due to the damage caused by the MS and the idiot docs who didn't even give me steroids for months, even though I was clearly in need of them...Sorry there are some people who really should not be in the Health Care field....
JJFL.....
Glad you found something useful in my post. I think you were right to be ' very doubtful that 2 neurological problems happen in a few weeks from each other 'I see your getting a thyroid hormone test It is the right thing to do to rule out all the other things it could be before saying it is MS.
You ask " in some of your MRIs no lesions were visible. I wonder by now do you know why? " Well the why, I don't know, the how I knew is that the MRI showed no visible lesions but the Evoked Potential test (or "evoked response") showed damage not visible on MRI ...This test measures the time it takes your brain to process a small electric shock (not bad) or other stimuli (light, for eyes and clicking noise for ears.)
I would call around to MRI centers and ask if they have a 3 Tesla machine. It will show more lesions, if they are their but they can still be missed even on these MRI's .
" Paroxysmal dyskinesia is a descriptive term for the most part. For example it’s like transverse myelitis…..it can be a disease in itself, but it is also a SYMPTOM of MS as can be the dyskinesias." This is what my PA at USF said after I asked her if I could tell Docs. that I have this problem. So yes one can have Paroxysmal dyskinesias without having MS.
Sorry to hear about your relative...the infections were mostly the result of my bladder not working right due to the damage caused by the MS and the idiot docs who didn't even give me steroids for months, even though I was clearly in need of them...Sorry there are some people who really should not be in the Health Care field....
JJFL.....
Engineer, your involuntary movements could be categorized as either fasciculations (small twitches of muscles) tremors (involuntary shaking) or myoclonus (involuntary jerks or twitches of arms, legs, head, etc.)
These are certainly part of MS. I began having fasciculations of my face, hands, and stomach muscles before my diagnosis. Especially in the eye muscles, and around the mouth. I get a muscle twitch in my right bicep, now, and the tricep of my left arm.
After a bad flare, my right hand would shake when I tried to use it (intention tremor.)
I also get myoclonus of the legs, arms, and the back muscles. Myoclonus sounds most like what you're experiencing. Mine are sometimes triggered by a paresthesia, which builds to a WHAP! and then the limb with the paresthesia in it will fly up in the air.
There are a few neurological conditions which resemble MS, but if there's a chance that administering DMDs now will prevent you from developing MS, I'd say go for it.
You won't necessarily have to take betaseron. There are several treatments out there, all about the same in terms of effectiveness.
These are certainly part of MS. I began having fasciculations of my face, hands, and stomach muscles before my diagnosis. Especially in the eye muscles, and around the mouth. I get a muscle twitch in my right bicep, now, and the tricep of my left arm.
After a bad flare, my right hand would shake when I tried to use it (intention tremor.)
I also get myoclonus of the legs, arms, and the back muscles. Myoclonus sounds most like what you're experiencing. Mine are sometimes triggered by a paresthesia, which builds to a WHAP! and then the limb with the paresthesia in it will fly up in the air.
There are a few neurological conditions which resemble MS, but if there's a chance that administering DMDs now will prevent you from developing MS, I'd say go for it.
You won't necessarily have to take betaseron. There are several treatments out there, all about the same in terms of effectiveness.
hello JJFL, I hope you are fine. I read your PM and I found that you have replied to this post. thank you very much for your post, it was very useful. As I said above, I used to be completely healthy about 3 months ago and then suddenly 2 very different and peculiar symptoms showed up, blurred vision in left eye that I notice it almost by chance(while rubbing my right eye) and a few weeks later involuntary movements. One neurologist insisted that it is related to anxiety but one thing that makes me very doubtful is 2 neurological problems happen in a few weeks from each other in a used to be healthy person. maybe if I had blurred vision and heart attack(not a neurological disease), then heart attack could be associated with anxiety. maybe if I had two different neurological symptoms in 6 months from each other again the latter could be associated with anxiety. another neurologist that I met afterward was more hesitant and said I have to get a thyroid hormone test and another MRI in 4 months from the first before he can say anything. my involuntary movements have decreased a lot but have not gone completely. now most of involuntary movements that I have is in the form of muscle twitch in my left arm muscle(biceps I think) It occurs 3-10 times a day and each scenario lasts about 3-10 minutes. I also rarely have some involuntary movements while I want to intentionally move my body(mostly arms), I mean for example I command my arm to comes up rapidly but I notice also my wrist bends slightly backward while I never remember have mentioned anything about my wrist in my command and I have no idea in who's command the wrist moves but these moves are slight and these scenarios are relatively few once every other day, I even insisted to my latest neurologist can I have anther MRI right now maybe it gives us some more information but he said no it dose not give us any more useful information.I also read your first post that in some of your MRIs no lesions were visible. I wonder by now do you know why? I mean was resolution of MRI low or technique was not appropriate. my previous MRI in which another neurologist also confirmed that I have two lesions around corpus collosum in it had been taken with 1.5 Tesla MRI, with T2 technique and without injection. my latest neurologist says that I have to get another MRI preferably without and with injection in 4 months. I guess first they take a MRI without injection and then after injection they take another MRI. newer lesions become brighter in second MRI so they get an idea how many of lesions are old and how many are new. I keep a very close eyes on my symptoms. I already have changed my life style a lot and I eat 3 times a weak sea food, I eat far more fruits than before and also I eat B1 vitamin, multivitamin, D vitamin and omega-3 tablets.
You mentioned that you have both diagnosed as MS patient and Paroxysmal dyskinesias. are these two related I mean can one have Paroxysmal dyskinesias without having MS? you also mentioned something about infectious diseases in your first post but how it relates to Paroxysmal dyskinesias or MS? I ask this because one of my close relatives also had a bad infectious disease that had almost killed him and from that date his legs had been weaken so much that he couldn't walk without a stick, unfortunately he has died now but he was never diagnosed with MS.
Take care,
Engineer,
You mentioned that you have both diagnosed as MS patient and Paroxysmal dyskinesias. are these two related I mean can one have Paroxysmal dyskinesias without having MS? you also mentioned something about infectious diseases in your first post but how it relates to Paroxysmal dyskinesias or MS? I ask this because one of my close relatives also had a bad infectious disease that had almost killed him and from that date his legs had been weaken so much that he couldn't walk without a stick, unfortunately he has died now but he was never diagnosed with MS.
Take care,
Engineer,
Hi Engineer75,
I am new to this board. I have watched a lot of MS boards in the last few months and from what I have ssen this is one of the best... If you read my first post you will see I have been through the wringer with this monster...
Don't let them get you down when they say your anxious or stressed.. Tell them to send you to a Psych. Doc. That will make smoke come out of there ears. They don't know what to think when your the one to suggest that.and if they offer meds say ok.. I would ask for the smallest dose possible..been there done that....LOL
I am DX with MS unusual presentation w/ Painful Spasms.Paroxysmal Dyskinesia is the name the Docs use I have noticeable brain atrophy..even I could see it on my MRI
and lesions in the corpus collasum and periventricular areas..
Note I said UNUSUAL presentation just bacause I have this doesn't mean you do but it is something to ask you neurologist. and find out if he/she is a movement specialist because not every Doc is going to know about the rare movement disorders...
Paroxysmal dyskinesias are neurologic conditions characterized by sudden episodes of abnormal involuntary movements (hyperkinesias). These may include any combination of involuntary, rapid, randomly irregular jerky movements (chorea); relatively slow, writhing motions that appear to flow into one another (athetosis); increased muscle tone with repetitive, twisting, patterned movements and distorted posturing (dystonia); and uncontrollable flinging movements of an arm, a leg, or both (ballismus). The term paroxysmal indicates that the abnormal movements are sudden and unpredictable, with a relatively rapid return to normal motor function and behavior.
JJFL.....
P.S.- I was in a hospital and my roomate said maybe the reason I have such terrible pain is because I take the pain away from the babies of the world...\ I told him I am failing then because there are a lot of babies in pain...
Your not being punished for anything you did or thought or being put through a test. I have also been there to...LOL God is Forgiveness and Love....keep that with you and know you will get through this.
Hi Engineer, I came back today to check on you - I'm glad you are still here and questioning. We all question and that is normal and healthy.
Your body twitches will probably become an obsession for a while; I know mine did. Here is what my very wise MS neurologist talked to me about when I was initially diagnosed and I thought every twinge, jump or ache had to be related to the MS -
To paraphrase him - As patients we become hypersensitive to everything going on with our bodies and lots of times things that wouldn't have registered with us before jump out at us with great force and are amplified to almost exaggeration.
Think about when you are at home in bed at night when all the external noises such as the television and people are all turned off and quiet. As you lay in bed, what do you hear? Do you hear total silence? No, Your hear everything! The dripping faucet in the bathroom. The furnace cycling. The creaking floorboard on the stairs. The noises in the attic. Are those new noises? No, but you don't hear them unless that is what you're listening for. And the more you focus on those sounds, the louder and more ominous they can become.
With this possibility of MS we become much like that person in bed - alone and hearing every noise. It can be scarey and we have to learn to fine tune our listening skills to filter out those sounds that mean nothing. Otherwise we will begin to believe and accept that we live in a haunted house or body.
End of neuro's metaphor
Now back to me - I know this approach of letting it go and not being so hypersensitive is difficult to achieve. I had lots of practice earlier this year when I had my heart attack. You talk about hearing every beat of my heart! It took several months for me to dial back the sounds and not be so aware but it did happen. I attribute a large part of why I was able to regain this balance to educating myself.
Shell's advice to read and learn and question is the best any of us can give. It will help you some as you work through this with your doctors. And Doni is so right, we are all here to walk through this with you.
Feel better and please stay in touch,
Lulu
PS - are you an engineer and if so what kind? I can see an engineer particularly having trouble adjusting to this dx process because it doesn't fit neatly into the boxes and line up properly. LOL
Your body twitches will probably become an obsession for a while; I know mine did. Here is what my very wise MS neurologist talked to me about when I was initially diagnosed and I thought every twinge, jump or ache had to be related to the MS -
To paraphrase him - As patients we become hypersensitive to everything going on with our bodies and lots of times things that wouldn't have registered with us before jump out at us with great force and are amplified to almost exaggeration.
Think about when you are at home in bed at night when all the external noises such as the television and people are all turned off and quiet. As you lay in bed, what do you hear? Do you hear total silence? No, Your hear everything! The dripping faucet in the bathroom. The furnace cycling. The creaking floorboard on the stairs. The noises in the attic. Are those new noises? No, but you don't hear them unless that is what you're listening for. And the more you focus on those sounds, the louder and more ominous they can become.
With this possibility of MS we become much like that person in bed - alone and hearing every noise. It can be scarey and we have to learn to fine tune our listening skills to filter out those sounds that mean nothing. Otherwise we will begin to believe and accept that we live in a haunted house or body.
End of neuro's metaphor
Now back to me - I know this approach of letting it go and not being so hypersensitive is difficult to achieve. I had lots of practice earlier this year when I had my heart attack. You talk about hearing every beat of my heart! It took several months for me to dial back the sounds and not be so aware but it did happen. I attribute a large part of why I was able to regain this balance to educating myself.
Shell's advice to read and learn and question is the best any of us can give. It will help you some as you work through this with your doctors. And Doni is so right, we are all here to walk through this with you.
Feel better and please stay in touch,
Lulu
PS - are you an engineer and if so what kind? I can see an engineer particularly having trouble adjusting to this dx process because it doesn't fit neatly into the boxes and line up properly. LOL
Hi there,
Well, you sure have had a good talking to by all above. I just wanted to say Hi and Welcome and mention a few things.
It's ok. It's okay to be worried, but I promise you - you are not ruined. Well, not yet anyway..ha/ha... Trying to lighten your load a little here.
I've mentioned this before on the forum because it will help you to help yourself through your thoughts right now while your Dr. is ruling out mimics (please read our HPs by the way on what it takes to get a dx and make sure all the tests are run for you).
How do you usually react and respond to news that is "not what you were expecting?" Or, news that you know nothing about the subject? Do you usually read up on the subject? Educate yourself? Do you ask questions to the Dr.? Do you panic? Or, get upset?
For me, I researched. I figured based on my research that I "could not have had MS." LOL. And, I could not have been more wrong. I know a lot more now about the disease and I'm doing much, much better.
I encourage you to stick with us. Ask your Dr. some questions. Read our health pages on MRIs and lesions and the test involved with the dx process. And of course, get to know us a little, we are quite the bunch. You'll find you can ask us anything pretty much. I'm glad you found us. Not going to let this "ruin" you okay?
ttys,
shell
Well, you sure have had a good talking to by all above. I just wanted to say Hi and Welcome and mention a few things.
It's ok. It's okay to be worried, but I promise you - you are not ruined. Well, not yet anyway..ha/ha... Trying to lighten your load a little here.
I've mentioned this before on the forum because it will help you to help yourself through your thoughts right now while your Dr. is ruling out mimics (please read our HPs by the way on what it takes to get a dx and make sure all the tests are run for you).
How do you usually react and respond to news that is "not what you were expecting?" Or, news that you know nothing about the subject? Do you usually read up on the subject? Educate yourself? Do you ask questions to the Dr.? Do you panic? Or, get upset?
For me, I researched. I figured based on my research that I "could not have had MS." LOL. And, I could not have been more wrong. I know a lot more now about the disease and I'm doing much, much better.
I encourage you to stick with us. Ask your Dr. some questions. Read our health pages on MRIs and lesions and the test involved with the dx process. And of course, get to know us a little, we are quite the bunch. You'll find you can ask us anything pretty much. I'm glad you found us. Not going to let this "ruin" you okay?
ttys,
shell
Welcome to the forum, Engineer! I'm glad you found us, the is the greatest place, with wonderful people.
Lulu, has said everything wonderfully and I totally agree with her. The possibility of MS is a scary thing, but you sound like a very strong person and one who can fight through any challenge.
We will all be here to support you and help you get through all this.
Take care,
doni
Lulu, has said everything wonderfully and I totally agree with her. The possibility of MS is a scary thing, but you sound like a very strong person and one who can fight through any challenge.
We will all be here to support you and help you get through all this.
Take care,
doni
Hello,
Thanks for your support,
Now after about 10 days of beginning involuntary movements, the problem alleviated more than 80% but still not completely resolved. The important point is my neurologist insists that it is 80% MS just based on V.E.P result for blurry vision and what he says two plaques in MRI(he said even normal people can have plaques but because I both have a positive V.E.P and plaques he thinks there is 80% that I have MS) but still he can't relate movement problem to his diagnosis and says it is may be because I'm anxious. Yes I'm anxious about having MS but I had been anxious about many things in my life but I never had such movements. I think the important point is the neurologist should be able to put my involuntary movement in the context of his diagnosis. I used to be a healthy man. I even rarely caught a cold. now in period of 1.5 month I have two problems I never experienced in my life before blurry vision that they diagnosed it as optic neuritis and involuntary movements in most of my body limbs. they should be connected to each other somehow.
The neurologist insisted that I have to perform a lumbar puncture and if I had positive oligoclonal bands then I have to start beta interferon. I read there are many other conditions that can give a positive LP including optic neuritis itself and viral infections. So he wants me though I do not have diagnosed as clinically definite MS start MS medications! what If I do not have MS? what if those medications can complicate my another not yet diagnosed problem?
I have changed my diet completely I consume 3 times in a weak sea food. I feel better. but still my vision is sensitive to temperature.
I still hope I do not have MS. maybe God wants to test me in harsh conditions. "GOD , I'm failed, I can't tolerate this. please give back my health. test me with money not health."
Please pray for me.
Merry X-MAS
Thanks for your support,
Now after about 10 days of beginning involuntary movements, the problem alleviated more than 80% but still not completely resolved. The important point is my neurologist insists that it is 80% MS just based on V.E.P result for blurry vision and what he says two plaques in MRI(he said even normal people can have plaques but because I both have a positive V.E.P and plaques he thinks there is 80% that I have MS) but still he can't relate movement problem to his diagnosis and says it is may be because I'm anxious. Yes I'm anxious about having MS but I had been anxious about many things in my life but I never had such movements. I think the important point is the neurologist should be able to put my involuntary movement in the context of his diagnosis. I used to be a healthy man. I even rarely caught a cold. now in period of 1.5 month I have two problems I never experienced in my life before blurry vision that they diagnosed it as optic neuritis and involuntary movements in most of my body limbs. they should be connected to each other somehow.
The neurologist insisted that I have to perform a lumbar puncture and if I had positive oligoclonal bands then I have to start beta interferon. I read there are many other conditions that can give a positive LP including optic neuritis itself and viral infections. So he wants me though I do not have diagnosed as clinically definite MS start MS medications! what If I do not have MS? what if those medications can complicate my another not yet diagnosed problem?
I have changed my diet completely I consume 3 times in a weak sea food. I feel better. but still my vision is sensitive to temperature.
I still hope I do not have MS. maybe God wants to test me in harsh conditions. "GOD , I'm failed, I can't tolerate this. please give back my health. test me with money not health."
Please pray for me.
Merry X-MAS
Dear Engineer,
My heart is heavy for you because you are so filled with fear of MS. These few days are slow around here on the forum because of the holidays but I am sure once we get a quorum here, you will hear lots of voices of reassurance.
Yes there are many reasons to be frightened by the prospect of MS but there are also reasons to be encouraged. First, if this is MS , you are being diagnosed early. The earlier the treatment, the greater the odds that it will be effective in slowing and/or eliminating the relapses.
Yes, life is not fair and good people suffer. But bad people suffer too. The role of the dice when it comes to our health seems to be indiscriminate - everyone can be taken down by serious illness without much warning. Two of my sisters became widows at an early age when their husbands died much too young of cancer. Cr ap happens all the time that is out of our control - we can't pretend otherwise. It would be convenient if there was someone to blame, such as a higher power, but the basic truth I believe is what I just wrote - cr ap happens.
Yes, MS is a very serious disease, but it doesn't kill you. There are many here who are merely inconvenienced by this disease by having to take disease modifying drugs (DMD's) to control it. And I will grant you there are also those people here whose life has been changed forever because of the physical problems MS can bring.
Yes, there is little right now that can be done for MS aside from the DMD's but scientists in labs all over the world are working as hard as possible to find the ultimate cure for MS. They are unlocking secrets of the body with increasing frequency. All of us know that prevention and a cure of MS are possible in our lifetime. There is great hope about this.
Yes, there are patients who become so despondent about MS that they end their lives prematurely. The right to die with dignity is a totally separate discussion that I won't start here but the people making these headlines are definitely a minority. Most of us here you will find are fighting with every bit of energy we have to maintain our lives in the best way possible. The majority of us live life to the fullest, in whatever form our bodies permit.
Yes, we need more dedicated doctors fighting to find a cure for this disease. But we also need researchers, doctors and engineers among other professions, to tackle other issues in this world - be they medical diseases, human foibles, or engineering tasks. Change career paths only if feel the calling to medicine and not because of promises made while under a sense of panic, ok?
Yes, we all want to cry when we hear the news that it might be MS. So go ahead and shed a tear and then get on with figuring out what the monster is in your body. Knowledge is power and the sooner you know what it is the earlier you can begin the battle.
Please know that there are willing listeners here almost all of the time - Christmas day might be the exception - and come back when you have questions, need to vent or learn more.
Welcome to our community - I hope you will use us as guides on this journey.
My best, Lulu
My heart is heavy for you because you are so filled with fear of MS. These few days are slow around here on the forum because of the holidays but I am sure once we get a quorum here, you will hear lots of voices of reassurance.
Yes there are many reasons to be frightened by the prospect of MS but there are also reasons to be encouraged. First, if this is MS , you are being diagnosed early. The earlier the treatment, the greater the odds that it will be effective in slowing and/or eliminating the relapses.
Yes, life is not fair and good people suffer. But bad people suffer too. The role of the dice when it comes to our health seems to be indiscriminate - everyone can be taken down by serious illness without much warning. Two of my sisters became widows at an early age when their husbands died much too young of cancer. Cr ap happens all the time that is out of our control - we can't pretend otherwise. It would be convenient if there was someone to blame, such as a higher power, but the basic truth I believe is what I just wrote - cr ap happens.
Yes, MS is a very serious disease, but it doesn't kill you. There are many here who are merely inconvenienced by this disease by having to take disease modifying drugs (DMD's) to control it. And I will grant you there are also those people here whose life has been changed forever because of the physical problems MS can bring.
Yes, there is little right now that can be done for MS aside from the DMD's but scientists in labs all over the world are working as hard as possible to find the ultimate cure for MS. They are unlocking secrets of the body with increasing frequency. All of us know that prevention and a cure of MS are possible in our lifetime. There is great hope about this.
Yes, there are patients who become so despondent about MS that they end their lives prematurely. The right to die with dignity is a totally separate discussion that I won't start here but the people making these headlines are definitely a minority. Most of us here you will find are fighting with every bit of energy we have to maintain our lives in the best way possible. The majority of us live life to the fullest, in whatever form our bodies permit.
Yes, we need more dedicated doctors fighting to find a cure for this disease. But we also need researchers, doctors and engineers among other professions, to tackle other issues in this world - be they medical diseases, human foibles, or engineering tasks. Change career paths only if feel the calling to medicine and not because of promises made while under a sense of panic, ok?
Yes, we all want to cry when we hear the news that it might be MS. So go ahead and shed a tear and then get on with figuring out what the monster is in your body. Knowledge is power and the sooner you know what it is the earlier you can begin the battle.
Please know that there are willing listeners here almost all of the time - Christmas day might be the exception - and come back when you have questions, need to vent or learn more.
Welcome to our community - I hope you will use us as guides on this journey.
My best, Lulu
Hello ess, Thank you.
You know It's true that I'm too afraid of having MS. I feel my entire life has been ruined in matter of few weeks. I really don't understand why it is happening to me. I'm still not married, I lost my hope to marry . I have a successful business that I've built from scratch.I don't care about money. I just want my health back. I Have Master degree and I was planning for PhD I even was planning for another degree but I feel everything ruined. In the past while I was seeing an innocent child with a horrible disease I was asking god , why this innocent child, what he has done to deserve this? Now it is happening to myself, what I have done to deserve this? I'm not a bad person at all. why bad people can enjoy their life and sometimes good people have to struggle with horrible conditions. It is not fair. I'm losing my faith to god completely. I feel helpless. This disease is horrible horrible. I read in news that a woman with MS was seeking court permission to allow his husband kill her. I have read there is high suicidal rate among patients. I want to cry. Everything ruined. It is not fair. I was a healthy intelligent man with high hopes and potentially promising future. Now I have to wait for attacks and see myself being melted. I still hope I do not have this disease I promise to god if he spares me and if I do not have this disease I will enter medical school and I will devote my life serving people with MS. please pray for me. I wish all people health.
You know It's true that I'm too afraid of having MS. I feel my entire life has been ruined in matter of few weeks. I really don't understand why it is happening to me. I'm still not married, I lost my hope to marry . I have a successful business that I've built from scratch.I don't care about money. I just want my health back. I Have Master degree and I was planning for PhD I even was planning for another degree but I feel everything ruined. In the past while I was seeing an innocent child with a horrible disease I was asking god , why this innocent child, what he has done to deserve this? Now it is happening to myself, what I have done to deserve this? I'm not a bad person at all. why bad people can enjoy their life and sometimes good people have to struggle with horrible conditions. It is not fair. I'm losing my faith to god completely. I feel helpless. This disease is horrible horrible. I read in news that a woman with MS was seeking court permission to allow his husband kill her. I have read there is high suicidal rate among patients. I want to cry. Everything ruined. It is not fair. I was a healthy intelligent man with high hopes and potentially promising future. Now I have to wait for attacks and see myself being melted. I still hope I do not have this disease I promise to god if he spares me and if I do not have this disease I will enter medical school and I will devote my life serving people with MS. please pray for me. I wish all people health.
Hey, Engineer and welcome!
This is not a medically monitored forum and I'm no doctor, so please keep that in mind as I write what I'm going to. You eye symptoms do sound like optic neuritis, which very often turns out to be the first symptom of MS. You can have ON and MS without having a visible lesion. It can be farther back on the optic nerve. I would rely more on the neurologist's reading of the MRI than the radiologist's.
Someone should be doing a total workup on you for MS, including extensive blood work, comprehenaive physical exam, and other tests as indicated.
Now as to the newest things you are reporting, I have to agree with the doctor that these are not part of MS. My take is that they're due to the worry and anxiety you're experiencing in this time of not knowing that stretches on and on. This is not at all uncommon. My suggestion to you is to ask for an anti-anxiety med to help you feel better as you illness is pinned down. I think you find you feel a lot better.
ess
This is not a medically monitored forum and I'm no doctor, so please keep that in mind as I write what I'm going to. You eye symptoms do sound like optic neuritis, which very often turns out to be the first symptom of MS. You can have ON and MS without having a visible lesion. It can be farther back on the optic nerve. I would rely more on the neurologist's reading of the MRI than the radiologist's.
Someone should be doing a total workup on you for MS, including extensive blood work, comprehenaive physical exam, and other tests as indicated.
Now as to the newest things you are reporting, I have to agree with the doctor that these are not part of MS. My take is that they're due to the worry and anxiety you're experiencing in this time of not knowing that stretches on and on. This is not at all uncommon. My suggestion to you is to ask for an anti-anxiety med to help you feel better as you illness is pinned down. I think you find you feel a lot better.
ess
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