Posted: Thu Apr 02, 2009 4:49 pm
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Uncertain - Please Help?
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Posted: Thu Apr 02, 2009 6:14 pm
Hmmm interesting. I'll look into it. Thanks for the reply, pinpricks.
Posted: Thu Apr 02, 2009 6:25 pm
After reading those links, I can see why you would point me to them. The only qualm I have with this idea is that I don't really have much pain (aside from the random head shock things), which is the resonating symptom of fibromyalgia. =/
Posted: Fri Apr 03, 2009 9:17 am
Check this also. It mimic MS:
Hughes Syndrome (up to 5% MS in fact have this)
http://www.hughes-syndrome.org/
I will ask myself my doc when i will see him since i have no weakness at all.
----
Can you better describe your "random" pain .. it seems i have it (a sentence is better than single words).
For me:
-1- My pain is moving around (one place, then another, random)
-2- My pain is a stabbing pain.
2-1- At one time it was like a knife was poked into bones or muscles.
2-2- At other time it's like sharp needle is poked suddenly into bones.
2-3- At an other time it was like a sudden hammer shock into bones.
2-1 and 2-2 and 2-3 in October and December
Now it's 2-2 mostly and some 2-3
This type of pain is mainly in my legs in my case (90%) and the 10% back, around eyes, scalp, face ... etc.
Take care and give us news.
Hughes Syndrome (up to 5% MS in fact have this)
http://www.hughes-syndrome.org/
I will ask myself my doc when i will see him since i have no weakness at all.
----
Can you better describe your "random" pain .. it seems i have it (a sentence is better than single words).
For me:
-1- My pain is moving around (one place, then another, random)
-2- My pain is a stabbing pain.
2-1- At one time it was like a knife was poked into bones or muscles.
2-2- At other time it's like sharp needle is poked suddenly into bones.
2-3- At an other time it was like a sudden hammer shock into bones.
2-1 and 2-2 and 2-3 in October and December
Now it's 2-2 mostly and some 2-3
This type of pain is mainly in my legs in my case (90%) and the 10% back, around eyes, scalp, face ... etc.
Take care and give us news.
Posted: Fri Apr 03, 2009 9:39 am
Thanks for the link, I will look into that as well.
My pain is thus:
The only pain I have is what I can only describe as "shocks" in my head. It has happened a few times on the front right side of my head, but 99% of the time it happens in the same spot, on the left-back side of my head.
It feels like a flash of pain. A shock. A quick spark of pain. It lasts no more than a second. Sometimes I can tell it is coming, but it happens so quickly that I don't really have time to brace myself for it. Afterward, I usually feel a sort of tickle/tingle in the spot where the shock occurred.
The shocks happen seemingly at random times. I have not been able to discern anything that triggers them to happen - except for the in past week, they have started occurring every time I hear a loud, sharp noise (like something falling to banging), but they also continue to occur "randomly".
They vary in intensity. Sometimes they are so faint I barely notice. Sometimes they are enough to annoy me. Sometimes they are so strong it nearly knocks me over.
They also vary in frequency. I might just get one. I might get three in a row. Or I might get them continually for over an hour.
______________________________________________________
I have been unable to find any information anywhere (online, in books, etc.) that relates to the pains I am feeling. My doctor seems confused by them and kept thinking I had migraines (which they're not; we tried several different migraine treatments to no avail).
The closest I could come up with was simple partial seizures due to epilepsy. But I have trouble accepting that I could be having "seizures" continually for hours at a time, and still be able to function normally aside from a weird disturbance in my head. =/
My pain is thus:
The only pain I have is what I can only describe as "shocks" in my head. It has happened a few times on the front right side of my head, but 99% of the time it happens in the same spot, on the left-back side of my head.
It feels like a flash of pain. A shock. A quick spark of pain. It lasts no more than a second. Sometimes I can tell it is coming, but it happens so quickly that I don't really have time to brace myself for it. Afterward, I usually feel a sort of tickle/tingle in the spot where the shock occurred.
The shocks happen seemingly at random times. I have not been able to discern anything that triggers them to happen - except for the in past week, they have started occurring every time I hear a loud, sharp noise (like something falling to banging), but they also continue to occur "randomly".
They vary in intensity. Sometimes they are so faint I barely notice. Sometimes they are enough to annoy me. Sometimes they are so strong it nearly knocks me over.
They also vary in frequency. I might just get one. I might get three in a row. Or I might get them continually for over an hour.
______________________________________________________
I have been unable to find any information anywhere (online, in books, etc.) that relates to the pains I am feeling. My doctor seems confused by them and kept thinking I had migraines (which they're not; we tried several different migraine treatments to no avail).
The closest I could come up with was simple partial seizures due to epilepsy. But I have trouble accepting that I could be having "seizures" continually for hours at a time, and still be able to function normally aside from a weird disturbance in my head. =/
Posted: Fri Apr 03, 2009 10:13 am
Ok ... so we got the same type i think.
You have it on the head.
I have it mostly on legs now (all the nightmare begun in October last year).
Sudden "kick" then gone ... then another place.
Sometime many "kicks" at the same place.
Sometime it's like you, very light.
----
I have this, a tingling in the spot ....
----
One time i had a "kick" in one place on my scalp then gone.
Then immediately after an other "kick" in an other place of my scalp then gone.
Then a third "kick" that was in fact tingle in a third place on my scalp.
---
I would compare this to "twitching" but instead of being from brain to the body (i.e. driving side), it's reversed ... sensory in nature, but the pattern is the same.
You twitch one place, then an other place .. it follow a path sometime.
---
I have also tingling everywhere.
I have also an increase in tingling when i have strong emotion (for example listening to an emotional song) or something is very very scary.
Because of the last phrase, it looks parts of the problem is in the brain anyway.
In your case, it's the sudden big noise that increase the problem (enter the brain through auditory system).
---
I found out peoples on the web like me ... No explanations.
It's also like you, some time almost nothing then sudden increase.
better in the morning than the evening in my case.
---
I'm taking some Aspirin and it looks it helps ...
So I'm thinking now to this Hughes Syndrome.
---
By the way, did you took benzodiazepine (Klonopin, ... etc) and get off this at one time?
Take care and give us news.
You have it on the head.
I have it mostly on legs now (all the nightmare begun in October last year).
Sudden "kick" then gone ... then another place.
Sometime many "kicks" at the same place.
Sometime it's like you, very light.
----
I have this, a tingling in the spot ....
----
One time i had a "kick" in one place on my scalp then gone.
Then immediately after an other "kick" in an other place of my scalp then gone.
Then a third "kick" that was in fact tingle in a third place on my scalp.
---
I would compare this to "twitching" but instead of being from brain to the body (i.e. driving side), it's reversed ... sensory in nature, but the pattern is the same.
You twitch one place, then an other place .. it follow a path sometime.
---
I have also tingling everywhere.
I have also an increase in tingling when i have strong emotion (for example listening to an emotional song) or something is very very scary.
Because of the last phrase, it looks parts of the problem is in the brain anyway.
In your case, it's the sudden big noise that increase the problem (enter the brain through auditory system).
---
I found out peoples on the web like me ... No explanations.
It's also like you, some time almost nothing then sudden increase.
better in the morning than the evening in my case.
---
I'm taking some Aspirin and it looks it helps ...
So I'm thinking now to this Hughes Syndrome.
---
By the way, did you took benzodiazepine (Klonopin, ... etc) and get off this at one time?
Take care and give us news.
Posted: Fri Apr 03, 2009 11:43 am
I'm glad the Aspirin works for you, pinpricks!
No medication I have tried, over-the-counter or prescription, has done a damn thing to help with any of my symptoms, including the shock things in my head.
Yes, I have taken Klonopin (under the name Clonazepam). About 4 months into my symptoms, when the involuntary muscle movements started, my neurologist said I had Dystonia and put me on Klonopin as an anticonvulsant. It helped tremendously. But a week later, he decided I didn't have Dystonia, and he didn't know what I had. So I slowly eased myself off of the Klonopin over the next few weeks (because I've read that it can be severely addicting). I've been off of it for a week and a half now. Some of the dystonia-like symptoms have returned, but not with the ferocity in which I first experienced them.
I did notice that as I withdrew from the Klonopin, I began feeling a weird buzzing sensation in my head. It happened mostly whenever I woke up (any time I woke up, didn't matter if it was in the morning, or after a nap). Sometimes it was pretty overwhelming, but it's gone now.
That sensation was very different from the other head shock pains I've had for the past 5 months.
No medication I have tried, over-the-counter or prescription, has done a damn thing to help with any of my symptoms, including the shock things in my head.
Yes, I have taken Klonopin (under the name Clonazepam). About 4 months into my symptoms, when the involuntary muscle movements started, my neurologist said I had Dystonia and put me on Klonopin as an anticonvulsant. It helped tremendously. But a week later, he decided I didn't have Dystonia, and he didn't know what I had. So I slowly eased myself off of the Klonopin over the next few weeks (because I've read that it can be severely addicting). I've been off of it for a week and a half now. Some of the dystonia-like symptoms have returned, but not with the ferocity in which I first experienced them.
I did notice that as I withdrew from the Klonopin, I began feeling a weird buzzing sensation in my head. It happened mostly whenever I woke up (any time I woke up, didn't matter if it was in the morning, or after a nap). Sometimes it was pretty overwhelming, but it's gone now.
That sensation was very different from the other head shock pains I've had for the past 5 months.
Posted: Fri Apr 03, 2009 1:25 pm
I'm glad you stopped Klonopin. It's very addictive.
I had a VERY VERY bad experience when withdrawing from 3 years usage (cause, Tinnitus). I almost lost my job.
---
Anyway, as far as i know, and if you read my story nothing can be done for twitching. Only time will do the job.
Twitching is annoying (as well as clonus ... i have that on left side) but is less annoying than all the sensitive stuff. Sensitive stuff hurts, twitching doesn't. Buzzing is common in BFS.
I have been hit (by what? same thing as in 1992?) by that new stuff.
Waiting for appointment for GP this is what i did:
- I realize that coffee would increase a lot those "damn" sensations not immediately for hours after.
So i decided to cut it completely. It's 4 months now and i started to improve during the next 2 week after i stop. I don't want to say that coffee IS the culprit, neither only caffeine (i tried without and did nothing), but in my case it did something.
Obviously in MY case, 1 H after my coffee (with or without caffeine) i was shaking ... and in one case i took 2 coffees by 4 PM and by 8 PM it was a real nightmare (full of needle pricks sensation in legs).
So now i'm not shaking anymore bodywide.
I have those "kicks" but less in legs and tingling is less too (It's 8 months now).
I forgot to tell you that i became constipated, i stopped sweating and my heart would not bump up when doing exercise at some point.
Now this thing is back to normal.
You (Me?) have BFS (me for second time???)? but as far as i know, BFS is 80% twitching and 20% paresthesia (tingling/buzzing/cramps/vibrations .. you name it, you forgot an other one). Usually paresthesia resolve or stay at a lesser degree. As i am now it's the reversal.
What is BFS? No study done since it's benign (no loss of strength).
What to do? ... nothing as far as i know.
Usually they do an EMG to rule out other things.
---
I had in the past symptoms as left leg lost strength for 4 days and numb hand for one day but i didn't care.
So ... in fact i have MS? BFS? ... else? .. i wait for doc appointment now.
You? do you recall in your mind having in the past strange things happen?
I can't tell you more on this chapter ...
Take care
I had a VERY VERY bad experience when withdrawing from 3 years usage (cause, Tinnitus). I almost lost my job.
---
Anyway, as far as i know, and if you read my story nothing can be done for twitching. Only time will do the job.
Twitching is annoying (as well as clonus ... i have that on left side) but is less annoying than all the sensitive stuff. Sensitive stuff hurts, twitching doesn't. Buzzing is common in BFS.
I have been hit (by what? same thing as in 1992?) by that new stuff.
Waiting for appointment for GP this is what i did:
- I realize that coffee would increase a lot those "damn" sensations not immediately for hours after.
So i decided to cut it completely. It's 4 months now and i started to improve during the next 2 week after i stop. I don't want to say that coffee IS the culprit, neither only caffeine (i tried without and did nothing), but in my case it did something.
Obviously in MY case, 1 H after my coffee (with or without caffeine) i was shaking ... and in one case i took 2 coffees by 4 PM and by 8 PM it was a real nightmare (full of needle pricks sensation in legs).
So now i'm not shaking anymore bodywide.
I have those "kicks" but less in legs and tingling is less too (It's 8 months now).
I forgot to tell you that i became constipated, i stopped sweating and my heart would not bump up when doing exercise at some point.
Now this thing is back to normal.
You (Me?) have BFS (me for second time???)? but as far as i know, BFS is 80% twitching and 20% paresthesia (tingling/buzzing/cramps/vibrations .. you name it, you forgot an other one). Usually paresthesia resolve or stay at a lesser degree. As i am now it's the reversal.
What is BFS? No study done since it's benign (no loss of strength).
What to do? ... nothing as far as i know.
Usually they do an EMG to rule out other things.
---
I had in the past symptoms as left leg lost strength for 4 days and numb hand for one day but i didn't care.
So ... in fact i have MS? BFS? ... else? .. i wait for doc appointment now.
You? do you recall in your mind having in the past strange things happen?
I can't tell you more on this chapter ...
Take care
Posted: Fri Apr 03, 2009 1:39 pm
Hmm...
I am hesitant to think that BFS is my answer, because asy ou said, with BFS there is no weakness. But my entire body is pretty much wrought with weakness. From my feet to my fingers to my neck to my eyes.
I am hesitant to think that BFS is my answer, because asy ou said, with BFS there is no weakness. But my entire body is pretty much wrought with weakness. From my feet to my fingers to my neck to my eyes.
Posted: Fri Apr 03, 2009 2:07 pm
In BFS there is what they call "perceived weakness" different than "true weakness".wisher wrote:Hmm...
I am hesitant to think that BFS is my answer, because asy ou said, with BFS there is no weakness. But my entire body is pretty much wrought with weakness. From my feet to my fingers to my neck to my eyes.
True weakness is if you are in your car and can't lift you leg to go out of the car without the help of arms. Drop foot for example.
This means you lost a pretty big amount of strength.
Perceived weakness will not bother you unless you have to go full strength.
If you try to lift an heavy weight and you can do it, but on left side (as in my case in 1992) you can't go as strong/far as the other side it's perceived weakness. May be lost 10% but will not interfere with daily life.
Go there and see what it is:
http://nextination.com/aboutbfs/forums/ ... ?f=2&t=203
You're lucky, they did all exam (MRI) and they found nothing.
2 1/2 year ago they found hyper-dense spot in my left brain ... meaningless it's written.
What it is now?
By the way you could try also IBT, Incline Bed Therapy ... just lift the head of the bed by 6 inches.
There is a post here about that .... It will not hurt when we don't know what is happening.
bye
Posted: Fri Apr 03, 2009 9:42 pm
That is really good information, thanks a lot for the link!
Spinal Tap
Posted: Mon Apr 06, 2009 9:44 pm
Hello there,
I'm Amanda and have just been diagnosed with MS on Thursday.
So far what I have learnt from my experience is that there are so many tests that need to be completed to officially diagnose you. I'm not sure if you have already thought about it, but getting a spinal tap is a very good idea. If you do have MS it is really important to get the meds started so that you can keep things at bay. The spinal tap will be the last thing to rule out MS all together and it is worth it. It's a scary thing to think of doing but getting it done my self I can say that it really wasn't bad. If you can handle getting an IV you can handle getting an ST. I couldn't feel the tap it's self the only thing that pinched a little was the freezing and you can get them to put a topical freezing first.
I hope this helps!
Good Luck!
I'm Amanda and have just been diagnosed with MS on Thursday.
So far what I have learnt from my experience is that there are so many tests that need to be completed to officially diagnose you. I'm not sure if you have already thought about it, but getting a spinal tap is a very good idea. If you do have MS it is really important to get the meds started so that you can keep things at bay. The spinal tap will be the last thing to rule out MS all together and it is worth it. It's a scary thing to think of doing but getting it done my self I can say that it really wasn't bad. If you can handle getting an IV you can handle getting an ST. I couldn't feel the tap it's self the only thing that pinched a little was the freezing and you can get them to put a topical freezing first.
I hope this helps!
Good Luck!
Posted: Tue Apr 07, 2009 4:45 am
Hi Amanda, and thanks for your reply. I'm sorry to hear about your diagnosis, but at least now you can begin treatment and start recovering!
As for the spinal tap, I have actually have two of them done, but for a different reason.
My neurologist suspected that I may have a condition called pseudotumor cerebri. It's basically a condition where you have an excess of pressure in your head, and your body acts like / thinks it has a brain tumor, but there is no tumor. He did a spinal tap to check the pressure of my cerebrospinal fluid in order to test his theory. Unfortunately, the pressure level was within the normal range, but he went ahead and drained a few vials of the fluid anyway. He said he ran some pretty basic tests on the fluid, so I'm not sure if that includes testing for MS. The second spinal tap was basically to confirm/refute the findings of the first one and see if relieving the pressure in my head would make the head pains go away (it didn't).
Boo!
As for the spinal tap, I have actually have two of them done, but for a different reason.
My neurologist suspected that I may have a condition called pseudotumor cerebri. It's basically a condition where you have an excess of pressure in your head, and your body acts like / thinks it has a brain tumor, but there is no tumor. He did a spinal tap to check the pressure of my cerebrospinal fluid in order to test his theory. Unfortunately, the pressure level was within the normal range, but he went ahead and drained a few vials of the fluid anyway. He said he ran some pretty basic tests on the fluid, so I'm not sure if that includes testing for MS. The second spinal tap was basically to confirm/refute the findings of the first one and see if relieving the pressure in my head would make the head pains go away (it didn't).
Boo!
Posted: Wed Apr 08, 2009 3:25 pm
Hi wisher -
was your MRI of the brain only? if so there could be lesions along the cervix and spinal cord. I believe most of the lower body is affected by these lesions.
it sounds like you have enough spaticity (clonus and tone - stiffness) that you might want to investigate anispasmatic meds. the most used is diazapam aka valium..there are atleast 10 types a quick look at webmd can give you an idea.
There are a few eye tests that help confirm MS dx. but I can not recall their names an purposes. we have a member in this group called eye doc. he may be able to help.
I'm glad you found this site...i am relatively new and i visit hre quite often. this is like a ms group therapy site.
was your MRI of the brain only? if so there could be lesions along the cervix and spinal cord. I believe most of the lower body is affected by these lesions.
it sounds like you have enough spaticity (clonus and tone - stiffness) that you might want to investigate anispasmatic meds. the most used is diazapam aka valium..there are atleast 10 types a quick look at webmd can give you an idea.
There are a few eye tests that help confirm MS dx. but I can not recall their names an purposes. we have a member in this group called eye doc. he may be able to help.
I'm glad you found this site...i am relatively new and i visit hre quite often. this is like a ms group therapy site.
Posted: Wed Apr 08, 2009 3:49 pm
Thanks for the reply, peekaboo. 
Yes, my MRI was only on my brain. This is because initially, my only symptoms were the fatigue, head pains, and dizziness. Coincidentally, about a month and a half later, I had another MRI of my brain as part of a research study on synesthesia. I'm no expert, but they did give me a copy of my brain images, and I don't see anything that looks like lesions.
But as you said, it could be on my spine. My neurologist insists, however, that there is no reason for him to look closer at my spine. =/
_____________
I'm glad I found this site, too. Everyone here has been so helpful.
Yes, my MRI was only on my brain. This is because initially, my only symptoms were the fatigue, head pains, and dizziness. Coincidentally, about a month and a half later, I had another MRI of my brain as part of a research study on synesthesia. I'm no expert, but they did give me a copy of my brain images, and I don't see anything that looks like lesions.
But as you said, it could be on my spine. My neurologist insists, however, that there is no reason for him to look closer at my spine. =/
_____________
I'm glad I found this site, too. Everyone here has been so helpful.