Aa
I'm going to loose my mind, please help me!
I posted here a few months back.... I didn't get much for an answer.
Can someone please help me?
Started 4 yrs ago... tingling buzzing (not pins and needles) in legs and feet.
Doc sent me to neuro, who said exam was fine. When symptoms so random, kept persisting- did MRI with contrast of brain, c-spine, lumbar, all negative. He then did emg with evoked potentials. Negative
6 mths later.. still occuring- sends me to a new neuro for 2nd opinion- he does all kinds of blood tests, all negative, HIV test, and thoratic spine with contrast, redoes c-cpine with contrast, and follows it up with an MRA of thoratic spine, to make sure no blood vessels were 'twisted' on my spine.
ALL NEGATIVE.
a year later, I take myself to boston for a 3rd opinion. He again says exam was 'unremarkable' and that my neuros did all appropriate tests. Says to 'stop looking' for a problem, that if this were MS, something would have revealed itself by now.
They ALL conclude, that a LP is NOT warranted, because 'nothing' is showing justifcation to do such a procedure. I had a yr ago the brain and neck done AGAIN- because every 3-6 mths this 'shows up' again.
Again normal.
Well it's back- AGAIN.... now when I bend my neck forward, I get a buzzy feeling on my genital area (i know sorry)
I cant stand this. SOMETHING isn't right.
HOWEVER - becuase nothing 'has progressed' or got worse over 4yrs now---- they are all telling me to stop searching.
could this still be MS?
SHoud have they done a LP? ( I know i'm not a neurologist--but something is wrong) people don't just buzz and tingle randomly for years on and off do they??
Please, please, please--- has anyone had anything similar?
Also, my first neuro (who acutally HAS MS) said to me, "you may just have a begnin form of MS -that never produces any sign of 'organic' disease-- we wouldn't 'treat' that anyhow.... go on with your life..."
??
Thankyou,
cass
Can someone please help me?
Started 4 yrs ago... tingling buzzing (not pins and needles) in legs and feet.
Doc sent me to neuro, who said exam was fine. When symptoms so random, kept persisting- did MRI with contrast of brain, c-spine, lumbar, all negative. He then did emg with evoked potentials. Negative
6 mths later.. still occuring- sends me to a new neuro for 2nd opinion- he does all kinds of blood tests, all negative, HIV test, and thoratic spine with contrast, redoes c-cpine with contrast, and follows it up with an MRA of thoratic spine, to make sure no blood vessels were 'twisted' on my spine.
ALL NEGATIVE.
a year later, I take myself to boston for a 3rd opinion. He again says exam was 'unremarkable' and that my neuros did all appropriate tests. Says to 'stop looking' for a problem, that if this were MS, something would have revealed itself by now.
They ALL conclude, that a LP is NOT warranted, because 'nothing' is showing justifcation to do such a procedure. I had a yr ago the brain and neck done AGAIN- because every 3-6 mths this 'shows up' again.
Again normal.
Well it's back- AGAIN.... now when I bend my neck forward, I get a buzzy feeling on my genital area (i know sorry)
I cant stand this. SOMETHING isn't right.
HOWEVER - becuase nothing 'has progressed' or got worse over 4yrs now---- they are all telling me to stop searching.
could this still be MS?
SHoud have they done a LP? ( I know i'm not a neurologist--but something is wrong) people don't just buzz and tingle randomly for years on and off do they??
Please, please, please--- has anyone had anything similar?
Also, my first neuro (who acutally HAS MS) said to me, "you may just have a begnin form of MS -that never produces any sign of 'organic' disease-- we wouldn't 'treat' that anyhow.... go on with your life..."
??
Thankyou,
cass
I don't have a confirmed diagnosis either of MS. It is very frustrating, and from hearing what you have been through, it must be very upsetting. Certainly I can't speak medically, but for myself, I will keep pushing for an answer. That is something I feel I need, my symptoms continue and just because a Dr. doesn't know why does not mean I will stop asking why. There are many good articles under the "Health Pages" on this forum, and I believe many have had a LP when nothing else showed up.
You have come to the right place for support, hang in there. Push for answers if that is what you want and need!
Tracy
You have come to the right place for support, hang in there. Push for answers if that is what you want and need!
Tracy
Hi Cass,
Welcome to the MS forum here at MedHelp. New folks are usually well answered in their posts, but sometimes we get so many posts in a day that they slip quickly to the second page and we miss seeing them. This forum has been incredibly busy the past few months - so if you or anyone else reading this has this happen again please be sure to repost your question or bump it up so we are sure to see it and give you an answer.
Normally even if we don't have an answer we will tell you that too. That said, here's my non-medical, non-doctor opinion.
Everything you describe here can absolutely be attributed to MS. But your symptoms could also be attributed to one of the mimics. It does sound to me like your doctors are being thorough and are willing to keep looking for answers. Have they run all the usual blood work tests, including testing for Lyme?
I don't agree when the one doctor tells you that if it were MS it would make itself shown by now. There are a lot of people here with MS who waited out the testing for years before getting a diagnosis- some as long as 15 - 20 years.
And just because they can't see the lesions (damage to the myelin) with the technology available today doesn't mean the lesion damage doesn't exist.
We are given instinct for a reason and then we are told all of our lives to ignore that instinct . This sounds like you need to continue listening to the voices in your head that tell you something is wrong and keep working through the process.
I'm sure others will be through here to offer other suggestions.
In the meantime, rest easy and prepare to continue in your search.
Lulu
Welcome to the MS forum here at MedHelp. New folks are usually well answered in their posts, but sometimes we get so many posts in a day that they slip quickly to the second page and we miss seeing them. This forum has been incredibly busy the past few months - so if you or anyone else reading this has this happen again please be sure to repost your question or bump it up so we are sure to see it and give you an answer.
Normally even if we don't have an answer we will tell you that too. That said, here's my non-medical, non-doctor opinion.
Everything you describe here can absolutely be attributed to MS. But your symptoms could also be attributed to one of the mimics. It does sound to me like your doctors are being thorough and are willing to keep looking for answers. Have they run all the usual blood work tests, including testing for Lyme?
I don't agree when the one doctor tells you that if it were MS it would make itself shown by now. There are a lot of people here with MS who waited out the testing for years before getting a diagnosis- some as long as 15 - 20 years.
And just because they can't see the lesions (damage to the myelin) with the technology available today doesn't mean the lesion damage doesn't exist.
We are given instinct for a reason and then we are told all of our lives to ignore that instinct . This sounds like you need to continue listening to the voices in your head that tell you something is wrong and keep working through the process.
I'm sure others will be through here to offer other suggestions.
In the meantime, rest easy and prepare to continue in your search.
Lulu
I would ask for a diagnosis. If they are reluctant to say you have MS (as many doc's seem to be), then WHAT IS IT? You deserve an answer. I was lucky that my MRI had some lesions, although the first Neuro I saw said he wasn't "impressed" with them. If I had given up, and not gotten another opinion, I would not have a diagnosis. So, I say, don't stop looking for an answer to your problems. You have symptoms, you should continue searching for a doctor who can help you.
Blessings,
Sally
Blessings,
Sally
Thankyou both for takeing the time to respond to me.
I am going to call my neuro tomorrow and see if I can schedule yet another follow up and see if he wants to do anything further. (or if he is willing to)
In addition, I guess I have to stop the 'worrying' so much. I guess we are all handed a deck of cards in life.... ( i am worried to death that I have this- and I picture myself in a wheelchair debilitated and I get consumed with these thoughts.)
I suppose that sooner or later they will find out what is 'wrong' with me..... and if it ever does turn out to be MS, then I will learn to cope with that as well. It's just so hard......
However, there are worse things in life.
(a friend of mines daughter is at st. judes batteling brain cancer at 5yrs old)....
I have to come back to the thought of -- if it is MS, then I will handle it.....
Did you ever grapple with those feelings? It helped alot tonight to read some of your stories about general daily life... (cleaning your house on a beautiful saturday) and I said to myself..."if it is MS... I will live my life, just like everyone here who has MS and is living...)
Does that make any sense? Did you worry about your condition before diagnosis?
Again,
Thank you for takeing the time,
Cass
I am going to call my neuro tomorrow and see if I can schedule yet another follow up and see if he wants to do anything further. (or if he is willing to)
In addition, I guess I have to stop the 'worrying' so much. I guess we are all handed a deck of cards in life.... ( i am worried to death that I have this- and I picture myself in a wheelchair debilitated and I get consumed with these thoughts.)
I suppose that sooner or later they will find out what is 'wrong' with me..... and if it ever does turn out to be MS, then I will learn to cope with that as well. It's just so hard......
However, there are worse things in life.
(a friend of mines daughter is at st. judes batteling brain cancer at 5yrs old)....
I have to come back to the thought of -- if it is MS, then I will handle it.....
Did you ever grapple with those feelings? It helped alot tonight to read some of your stories about general daily life... (cleaning your house on a beautiful saturday) and I said to myself..."if it is MS... I will live my life, just like everyone here who has MS and is living...)
Does that make any sense? Did you worry about your condition before diagnosis?
Again,
Thank you for takeing the time,
Cass
I'm kind of in the same boat, but haven't had the LP or spinal MRI yet. The first neuro blew me off because I've had symptoms 10 years and my brain MRI is negative. Sent me to a rheumatologist (the second I've seen). He thinks it neurological, so after all those blood tests he ordered come back negative (fourth set - pretty sure they will :-)), I'll be asking for a referral to a different neuro - one not lazy or closed minded.
I just want to say - I get a completely irritating, painful, shocky kind of feeling in the worse place possible sometimes - so don't feel bad, I think we can't be the only ones!
Why, if every test has even a small margin or error, is it so hard to get doctors to consider the possibility that someone falls into that small percentage who have a disorder and test negative? And since some people obviously DO fall into that percentage, why are the scientists so adamant that the tiny percentage is the correct percentage? If they're going on diagnosed cases and doctors are afraid to diagnosed, isn't is possible that the percentage of people with something who test negative is actually a lot higher? This certainty the neuros have seems to defy simple logic, and it's driving me crazy!
Don't give up!
I just want to say - I get a completely irritating, painful, shocky kind of feeling in the worse place possible sometimes - so don't feel bad, I think we can't be the only ones!
Why, if every test has even a small margin or error, is it so hard to get doctors to consider the possibility that someone falls into that small percentage who have a disorder and test negative? And since some people obviously DO fall into that percentage, why are the scientists so adamant that the tiny percentage is the correct percentage? If they're going on diagnosed cases and doctors are afraid to diagnosed, isn't is possible that the percentage of people with something who test negative is actually a lot higher? This certainty the neuros have seems to defy simple logic, and it's driving me crazy!
Don't give up!
First off, welcome. Second, I'm sorry your post was not well-responded to. We try really hard to make sure everyone gets good attention, but we not only are all human, but most of us are a little addled to boot.
It is possible to have minimal MS disease in the brain that does not show up on MRI at first. If the MRIs were not of excellent power and resolution the chance is greater. Many excellent neuros believe that an MRI of the spine done on an MRI of less than 3T strength is not sufficient to show lesions.
You seem to have developed l'Hermitte's sign which is the buzzing somewhere in your lower body on bending your neck. This symptom is most common in MS, but can occur when anything has caused a lesion in the cevical spine. This demands a repeat cervical MRI preferably on a 3T machine.
I gather you still have the buzzing paresthesias in your legs and feet? Anywhere else except the L'Hermitte's? Do you have any weakness, fatigue, dizziness, cognitive problems? There is much more testing that needs to be done. When the buzzing started, did it begin all at once in both legs and feet?
I also agree that further blood tests for Lyme Disease are most appropriate. The blood test usually done is an ELISA test and there are many false negatives. You need a test called the Western Blot to be sent to a lab skilled in testing for tickborn diseases. See if you can get all your testing results and read them for your self. We have several people here who did this and discovered that positive results had been missed by their doctors. For example one member found that her MRI had been reported as normal when actually the radiologist had described lesions and suggest demyelinating disease as a possibility. Another had had a positive Lyme test missed entirely 2 years earlier.
Uhhh.......Just live with it? I doubt that any of these doctors would live passively with unknown neuro symptoms without turning over every rock and every ****. Time for new docs.
Finally, the doctor that has MS is woefully ignorant of what is known about how MS progresses and what the indications for treatment are. Currently the concept of there being a "Benign" form of MS is gone. Yes, some people do have a benign course throughout their lives. These make up less than 10% of those with RRMS. Too often it may start out benign and remain so for a decade or so, then rear up and become a true MonSter with marked symptoms and disability. At present we have no way to predict. Currently, if you are diagnosed with MS, no matter how paltry your symptoms seem, the recommendation is to treat with a DMD. The drugs are shown to have greater effect the earlier in the disease they are used.
Now, all of that I'm sure only served to make you more anxious. Do I have the gut feeling you have MS? Not really, but my opinion counts for zilch. The only thing that really raises m,y suspicion a little is the L'Hermitte's.
I would recommend that you take steps to help you deal with your anxiety. Note, I am not saying any of this is due to anxiety. It's just that the worry over it will destroy your current quality of life. Also, any doctor that picks up on underlying anxiety may have a tendency to dismiss your symptoms as anxiety-induced rather than caused-by-anxiety.
Currently less that 25% of people with MS are expected to be in a wheelchair in the next 25 years. With the promise of better targeted drugs, I believe even that percentage will drop. MS is not a death sentence and you would be expected to watch your grandchildren grow up. I know that is not a guarantee, but no person has any guarantees in this world.
I hope this helps and you stay around for more help and info.
Quix, MD (I wasn't a neurologist, but I did stay in a Holiday Inn Express!)
It is possible to have minimal MS disease in the brain that does not show up on MRI at first. If the MRIs were not of excellent power and resolution the chance is greater. Many excellent neuros believe that an MRI of the spine done on an MRI of less than 3T strength is not sufficient to show lesions.
You seem to have developed l'Hermitte's sign which is the buzzing somewhere in your lower body on bending your neck. This symptom is most common in MS, but can occur when anything has caused a lesion in the cevical spine. This demands a repeat cervical MRI preferably on a 3T machine.
I gather you still have the buzzing paresthesias in your legs and feet? Anywhere else except the L'Hermitte's? Do you have any weakness, fatigue, dizziness, cognitive problems? There is much more testing that needs to be done. When the buzzing started, did it begin all at once in both legs and feet?
I also agree that further blood tests for Lyme Disease are most appropriate. The blood test usually done is an ELISA test and there are many false negatives. You need a test called the Western Blot to be sent to a lab skilled in testing for tickborn diseases. See if you can get all your testing results and read them for your self. We have several people here who did this and discovered that positive results had been missed by their doctors. For example one member found that her MRI had been reported as normal when actually the radiologist had described lesions and suggest demyelinating disease as a possibility. Another had had a positive Lyme test missed entirely 2 years earlier.
Uhhh.......Just live with it? I doubt that any of these doctors would live passively with unknown neuro symptoms without turning over every rock and every ****. Time for new docs.
Finally, the doctor that has MS is woefully ignorant of what is known about how MS progresses and what the indications for treatment are. Currently the concept of there being a "Benign" form of MS is gone. Yes, some people do have a benign course throughout their lives. These make up less than 10% of those with RRMS. Too often it may start out benign and remain so for a decade or so, then rear up and become a true MonSter with marked symptoms and disability. At present we have no way to predict. Currently, if you are diagnosed with MS, no matter how paltry your symptoms seem, the recommendation is to treat with a DMD. The drugs are shown to have greater effect the earlier in the disease they are used.
Now, all of that I'm sure only served to make you more anxious. Do I have the gut feeling you have MS? Not really, but my opinion counts for zilch. The only thing that really raises m,y suspicion a little is the L'Hermitte's.
I would recommend that you take steps to help you deal with your anxiety. Note, I am not saying any of this is due to anxiety. It's just that the worry over it will destroy your current quality of life. Also, any doctor that picks up on underlying anxiety may have a tendency to dismiss your symptoms as anxiety-induced rather than caused-by-anxiety.
Currently less that 25% of people with MS are expected to be in a wheelchair in the next 25 years. With the promise of better targeted drugs, I believe even that percentage will drop. MS is not a death sentence and you would be expected to watch your grandchildren grow up. I know that is not a guarantee, but no person has any guarantees in this world.
I hope this helps and you stay around for more help and info.
Quix, MD (I wasn't a neurologist, but I did stay in a Holiday Inn Express!)
Cass,
Welcome to our forum family. I too am sorry that your original post was not answered. Thanks for coming back & posting again. The advice given above is great! The only thing I would add is to make sure you are keeping a timeline of what/when the symptoms are happening to you. Not sure if you have found the MS tracker yet but that has helped me - now I don't have to try to remember all of it. I am glad to see that you are trying to look on the positive side of whatever is going on with you! (ie - it could be worse like the girl with cancer) I have been known to get too wrapped up in what my body is doing & let that dictate how my day goes. Now I TRY to just record on my timeline & go about my day.
Here's to a good day!
Janette - limbolander
Welcome to our forum family. I too am sorry that your original post was not answered. Thanks for coming back & posting again. The advice given above is great! The only thing I would add is to make sure you are keeping a timeline of what/when the symptoms are happening to you. Not sure if you have found the MS tracker yet but that has helped me - now I don't have to try to remember all of it. I am glad to see that you are trying to look on the positive side of whatever is going on with you! (ie - it could be worse like the girl with cancer) I have been known to get too wrapped up in what my body is doing & let that dictate how my day goes. Now I TRY to just record on my timeline & go about my day.
Here's to a good day!
Janette - limbolander
Hi quix, and every one that responded to me. To answer a few of your questions.....
The neurologist used a closed MRI at the hospital, and wouldn't budge on 'where' I got my tests done, because of the 'quality' of the machines there.
Also, he said that because it wasn't one side, or any specific pattern on my legs..... that it didn't fit the normal progression of MS. I do not have numbness or tingling, rather a vibration, or buzzing is the best way to describe it.
I did read EVERY report from the radiologists.... because I needed to get them all before the doc in boston would see me.... fortunatly/unfortunalty everything was 'unremarkable'.
I don't remember at this point if I've been tested for lyme.
Also, I must tell you, that when my buzzing started, it was never specific to one area. sometimes it felt like a phone in my pocket on vibrate. Then in my foot, then on my calf....
Then it would disappear for months.....
They symptom that is most frighting is the buzzing when I bend my neck... it makes me crazy. AGAIN, my doc said thats NOT l'hermittes that lehermittes (sp) is marked by a electric shock feeling down my spine, more so in the arms and trunk.
I just don't know.
The other sypmptoms, cognition is fine (currently have a 4.0 gpa at school, balance and strength is fine, eyes are fine ) -- however, i worry about the eyes and fatigue at times- but then again, I am turning 40 this week, raise 3 kids, go to work full time and school full time... who wouldn't be tired! ?
Thankyou,
I hope I answered your questions.
Thankyou so much for your time....
The neurologist used a closed MRI at the hospital, and wouldn't budge on 'where' I got my tests done, because of the 'quality' of the machines there.
Also, he said that because it wasn't one side, or any specific pattern on my legs..... that it didn't fit the normal progression of MS. I do not have numbness or tingling, rather a vibration, or buzzing is the best way to describe it.
I did read EVERY report from the radiologists.... because I needed to get them all before the doc in boston would see me.... fortunatly/unfortunalty everything was 'unremarkable'.
I don't remember at this point if I've been tested for lyme.
Also, I must tell you, that when my buzzing started, it was never specific to one area. sometimes it felt like a phone in my pocket on vibrate. Then in my foot, then on my calf....
Then it would disappear for months.....
They symptom that is most frighting is the buzzing when I bend my neck... it makes me crazy. AGAIN, my doc said thats NOT l'hermittes that lehermittes (sp) is marked by a electric shock feeling down my spine, more so in the arms and trunk.
I just don't know.
The other sypmptoms, cognition is fine (currently have a 4.0 gpa at school, balance and strength is fine, eyes are fine ) -- however, i worry about the eyes and fatigue at times- but then again, I am turning 40 this week, raise 3 kids, go to work full time and school full time... who wouldn't be tired! ?
Thankyou,
I hope I answered your questions.
Thankyou so much for your time....
Well, your doc learned all he knows from a single book on MS - and it was an OLD book at that. MS paresthesias can present in every way possible. There is tremendous variation in how MS progresses. The cell phone set on vibrate is very, very common.
His understanding of the L'Hermitte's is too rigid and not particularly accurate. Where you feel the sensation depends on the location of the lesion and I have read that feeling it in the legs is more common. Mine is felt like a jelly-vibration in the front of my left thigh only. My neuro accepted that as a definite L'Hermitte's.
Bio spoke the truth. You need a new neuro.
I still am very suspicious of Lyme Disease. Please push for intensive testing for that.
Quix
His understanding of the L'Hermitte's is too rigid and not particularly accurate. Where you feel the sensation depends on the location of the lesion and I have read that feeling it in the legs is more common. Mine is felt like a jelly-vibration in the front of my left thigh only. My neuro accepted that as a definite L'Hermitte's.
Bio spoke the truth. You need a new neuro.
I still am very suspicious of Lyme Disease. Please push for intensive testing for that.
Quix
You taught me something new about L'Hermittes'. That was one of my first symptoms among numbness down one side of my torso, that sent me to my PCP and then to the Neuro. When I had six weeks straight of the L'Hermittes' (which was more scary than painful.) the tingling and buzzing sensation went straight down my spine. Alittle on each side of my neck and then straight down the back.
I have never heard of the sensation happening any other place. My spinal lesion is at T5 through T7. (thoracic spine for our newcomers-almost starting at the bra line and a bit down from there)
Even though the lesion stopped at T7, the shock like sensation (I keep coming up with different words to describe it) went all the way down to my butt. I have had a slight tingling down my tussy cheeks and onto the very top of my thighs. That's when it was at it's worst. I really did not know that was included in the L'Hermittes symptom.
Thanx Quix for teaching me something new. Goes to show that no matter how long you have had MS, you still can learn something new, that you thought you already understood.
Big Hugs "Quizzle" or should I say "Wizzle" after all your bladder PT?
Heather
I have never heard of the sensation happening any other place. My spinal lesion is at T5 through T7. (thoracic spine for our newcomers-almost starting at the bra line and a bit down from there)
Even though the lesion stopped at T7, the shock like sensation (I keep coming up with different words to describe it) went all the way down to my butt. I have had a slight tingling down my tussy cheeks and onto the very top of my thighs. That's when it was at it's worst. I really did not know that was included in the L'Hermittes symptom.
Thanx Quix for teaching me something new. Goes to show that no matter how long you have had MS, you still can learn something new, that you thought you already understood.
Big Hugs "Quizzle" or should I say "Wizzle" after all your bladder PT?
Heather
Lhermitte's indeed does NOT have to be a shock down the spine. It can be a variety of odd sensations anywhere below the neck, commonly in the legs.
I had no idea that that electric buzz in the exact same embarrassing area you mention, Cassy, was Lhermitte's... but when I described it for the neurologist, he said, "That's MS." (Meaning, that's Lhermitte's.) BTW, I was never actually diagnosed with MS or anything else.
I have had Lhermitte's for 9 years in many different places in my lower body (below the waist) and in my hands and even one wrist. I have NEVER had it down my spine.
Sometimes it is an electric buzz. Sometimes it is a distinct "tense/pulling" sensation. Sometimes it is a strong vibration.
Sometimes it is just a pinpoint of buzzing in, say, the side of one finger when I bend my head down.
Sometimes it is a pulling sensation over a large part of the front of one thigh.
Sometimes it is a strong vibration on the bottom of my right foot.
Sometimes it is a "river" (with tributaries) of electric buzzing from my rear down to the front of my knee on the left.
And many more examples...
Sometimes these particular spots will stay for days, weeks, months, every time I bend my head down far enough. (In one case it occurred when I just took a deep breath.)
Sometimes the "spot" will only last a day.
It's all Lhermitte's, and so is yours. Your doctor is very ignorant if he thinks it can only manifest as a shock down the spine.
Nancy
I had no idea that that electric buzz in the exact same embarrassing area you mention, Cassy, was Lhermitte's... but when I described it for the neurologist, he said, "That's MS." (Meaning, that's Lhermitte's.) BTW, I was never actually diagnosed with MS or anything else.
I have had Lhermitte's for 9 years in many different places in my lower body (below the waist) and in my hands and even one wrist. I have NEVER had it down my spine.
Sometimes it is an electric buzz. Sometimes it is a distinct "tense/pulling" sensation. Sometimes it is a strong vibration.
Sometimes it is just a pinpoint of buzzing in, say, the side of one finger when I bend my head down.
Sometimes it is a pulling sensation over a large part of the front of one thigh.
Sometimes it is a strong vibration on the bottom of my right foot.
Sometimes it is a "river" (with tributaries) of electric buzzing from my rear down to the front of my knee on the left.
And many more examples...
Sometimes these particular spots will stay for days, weeks, months, every time I bend my head down far enough. (In one case it occurred when I just took a deep breath.)
Sometimes the "spot" will only last a day.
It's all Lhermitte's, and so is yours. Your doctor is very ignorant if he thinks it can only manifest as a shock down the spine.
Nancy
I can't believe Nancy that you are describing my life!!!!!
I am on day 6 or so,of the buzzing in the (private area- only one side) when I bend my head down....
And the 'pulling' sensation on th back of my rear end... (same side)---
This is a long bout for me- back in September this happened (again - after about 1yr clear) and i was able to dismiss it, because it only lasted a day or 2.
I call the 'pulling sensation' numbness, but it's not really numb, because when I touch, pinch, etc. the area, I can feel it... it's more as an absent/pulling sensation which you described!!
I am almost in tears, because NO ONE KNOW what the heck I'm talking about- and I have NO other symptome....
The multiple docs can't figure it out.... I'm at a loss.
It literally scares the living daylights out of me. I wonder, "what next".
What were you eventually diagnosed with?
Thank you both,
sincerely,
cass
I am on day 6 or so,of the buzzing in the (private area- only one side) when I bend my head down....
And the 'pulling' sensation on th back of my rear end... (same side)---
This is a long bout for me- back in September this happened (again - after about 1yr clear) and i was able to dismiss it, because it only lasted a day or 2.
I call the 'pulling sensation' numbness, but it's not really numb, because when I touch, pinch, etc. the area, I can feel it... it's more as an absent/pulling sensation which you described!!
I am almost in tears, because NO ONE KNOW what the heck I'm talking about- and I have NO other symptome....
The multiple docs can't figure it out.... I'm at a loss.
It literally scares the living daylights out of me. I wonder, "what next".
What were you eventually diagnosed with?
Thank you both,
sincerely,
cass
Hi Cass--yes, that sounds SO familiar. On and off, different areas, different sensations, but often lasting a long time in one spot and definitely when you bend your head down. That's Lhermitte's. On other forums I have seen people (diagnosed with MS) describe even weirder sensations, and also in just specific spots in their legs or torso, not down the back.
I never got any diagnosis, but I haven't seen neurologists since 2003. I saw a spine specialist (orthopedist) three years ago, thinking that maybe some of my symptoms were due to my scoliosis, but it turned out that my scoliosis is only lumbar (lower back), not in my neck at all.
The orthopedist ordered an MRI of my neck and said there was nothing seen there to account for my symptoms, no lesions. Later I got the report myself and saw that I DO have bone spurs, "flattening the anterior surface of the spinal cord," but the "signal within the cord" remains normal. Despite what the orthopedist said, I'm assuming that the bone spurs COULD be causing the Lhermitte's. On the other hand, some people with Lhermitte's who DO have MS have normal cervical MRIs, the lesions just presumably being too small for the MRI to see.
The neurologist I saw in 2000-2001 did not think it necessary to do spinal MRIs or an LP either. The 2nd neurologist, in 2002-2003, did order a cervical MRI (which was normal at that time, no mention of bone spurs, although I'd already had Lhermitte's for 2 years at that point), attempted an LP which was unsuccessful, later said I did not need an LP. They both stopped following me. My brain lesions are small and nonspecific, and my office exams were normal enough to satisfy the neuros.
I have also had, over the years, a large number of odd (non-Lhermitte's) paresthesias that occurred persistently in the same spot over days or weeks ("cold" sensations, terrible itchy spots, tingling, "pressure" spots, "electric-spider" sensations, "tap-dancing centipedes," etc. etc.), the buzzy types often occurring in regular or irregular "pulses." Try telling all that to a doctor and you'll get the hypochondriac diagnosis, for having "too many" symptoms.
Good luck with everything. You definitely should tell your doctor about the Lhermitte's. If you have a neurologist who says that is not Lhermitte's, you should either educate him--if he's receptive and otherwise seems trustworthy to you--or find a new one. If he doesn't believe you, tell him to call some of his colleagues who are MS specialists and ask them if Lhermitte's can only be a shock down the spine (if he won't believe a mere patient).
Nancy
I never got any diagnosis, but I haven't seen neurologists since 2003. I saw a spine specialist (orthopedist) three years ago, thinking that maybe some of my symptoms were due to my scoliosis, but it turned out that my scoliosis is only lumbar (lower back), not in my neck at all.
The orthopedist ordered an MRI of my neck and said there was nothing seen there to account for my symptoms, no lesions. Later I got the report myself and saw that I DO have bone spurs, "flattening the anterior surface of the spinal cord," but the "signal within the cord" remains normal. Despite what the orthopedist said, I'm assuming that the bone spurs COULD be causing the Lhermitte's. On the other hand, some people with Lhermitte's who DO have MS have normal cervical MRIs, the lesions just presumably being too small for the MRI to see.
The neurologist I saw in 2000-2001 did not think it necessary to do spinal MRIs or an LP either. The 2nd neurologist, in 2002-2003, did order a cervical MRI (which was normal at that time, no mention of bone spurs, although I'd already had Lhermitte's for 2 years at that point), attempted an LP which was unsuccessful, later said I did not need an LP. They both stopped following me. My brain lesions are small and nonspecific, and my office exams were normal enough to satisfy the neuros.
I have also had, over the years, a large number of odd (non-Lhermitte's) paresthesias that occurred persistently in the same spot over days or weeks ("cold" sensations, terrible itchy spots, tingling, "pressure" spots, "electric-spider" sensations, "tap-dancing centipedes," etc. etc.), the buzzy types often occurring in regular or irregular "pulses." Try telling all that to a doctor and you'll get the hypochondriac diagnosis, for having "too many" symptoms.
Good luck with everything. You definitely should tell your doctor about the Lhermitte's. If you have a neurologist who says that is not Lhermitte's, you should either educate him--if he's receptive and otherwise seems trustworthy to you--or find a new one. If he doesn't believe you, tell him to call some of his colleagues who are MS specialists and ask them if Lhermitte's can only be a shock down the spine (if he won't believe a mere patient).
Nancy
Thankyou so much, your time is such a gift to me... I haven't heard from ANYONE, at all, who has experienced almost exactly what I have. As I'm sure you saw in my original post... I have had 2 neuros in my area, (the first referred me to the second) (in an attempt to figure this out).
After 9 MRI's---- over 2yrs - nothing has popped up, not one lesion, not one spinal condition...
When I read the report, i saw a comment on the c-spine MRI that there was 'unremarkable mild disc degeneration'....
I was told that was a normal part of ageing....
Also, when I went to a major Hopital of Neurology in Boston, the neuro said there, "I have read all of your results, your exam is normal, I think all tests have been exhausted, and you should just understand that some conditions aren't related to organic disease."
He also explained that some conditions never reciever diagnosis, up to 1/3 or neuro patients encounter this...
I worry that I still have an undiagnosed case of MS - because of the reaccurance of symptoms.
My initial neuro (who I am going back to see on May 22) didn't dismiss l'hermittes (sp), however said that the 'typical' sensation is a buzzing down the spine, that 'may' radiate down arms and legs....
He also said, that unfortunatly, people 'worry' about MS and other neuro conditions, however, in the absence of any positive findings, on exam, tests, and multiple docs opinions, I'm looking for something i may never find an anwer to.
My neuro has MS and is very sensitive to his patients. He is the only neurologist who didn't dismis me or tell me I am just anxious. However, he is concerned that without this 'progressing' into anything- that I'm diminishing my quality of life, by constantly 'worrying' about symptoms that they can't identify.
It's funny-- during times that they symptoms don't last long, I can cope. Obviously when the symptoms aren't there, I don't 'worry', however, during what I call (a flare up)--- I go absolutly insane.
Trying to talk to your family (or even a friend who's wife HAS progressive MS)- is useless. Most people, including my friend who's wife has MS, believe that if 'something were seriously wrong' that at least ONE of these docs, or ONE of these tests would have indicated something--- over the past 4yrs.
Again, I just want to let you know, that your time has put at least a tiny bit of peace in my heart today, to hear that you've been dealing with this for 9 years, and nothing 'horrid' has happend yet, gives me hope.
Also, to hear I'm not the only 'crazy' person out there, makes me feel like I found at least one person in this world that 'understands'. If you ever need to chat, please feel free to write me.....
Sincerly, (hugs)
Cass
After 9 MRI's---- over 2yrs - nothing has popped up, not one lesion, not one spinal condition...
When I read the report, i saw a comment on the c-spine MRI that there was 'unremarkable mild disc degeneration'....
I was told that was a normal part of ageing....
Also, when I went to a major Hopital of Neurology in Boston, the neuro said there, "I have read all of your results, your exam is normal, I think all tests have been exhausted, and you should just understand that some conditions aren't related to organic disease."
He also explained that some conditions never reciever diagnosis, up to 1/3 or neuro patients encounter this...
I worry that I still have an undiagnosed case of MS - because of the reaccurance of symptoms.
My initial neuro (who I am going back to see on May 22) didn't dismiss l'hermittes (sp), however said that the 'typical' sensation is a buzzing down the spine, that 'may' radiate down arms and legs....
He also said, that unfortunatly, people 'worry' about MS and other neuro conditions, however, in the absence of any positive findings, on exam, tests, and multiple docs opinions, I'm looking for something i may never find an anwer to.
My neuro has MS and is very sensitive to his patients. He is the only neurologist who didn't dismis me or tell me I am just anxious. However, he is concerned that without this 'progressing' into anything- that I'm diminishing my quality of life, by constantly 'worrying' about symptoms that they can't identify.
It's funny-- during times that they symptoms don't last long, I can cope. Obviously when the symptoms aren't there, I don't 'worry', however, during what I call (a flare up)--- I go absolutly insane.
Trying to talk to your family (or even a friend who's wife HAS progressive MS)- is useless. Most people, including my friend who's wife has MS, believe that if 'something were seriously wrong' that at least ONE of these docs, or ONE of these tests would have indicated something--- over the past 4yrs.
Again, I just want to let you know, that your time has put at least a tiny bit of peace in my heart today, to hear that you've been dealing with this for 9 years, and nothing 'horrid' has happend yet, gives me hope.
Also, to hear I'm not the only 'crazy' person out there, makes me feel like I found at least one person in this world that 'understands'. If you ever need to chat, please feel free to write me.....
Sincerly, (hugs)
Cass
Hi Cass--believe me, there are a LOT of people out there (not just me!) who've had symptoms for a long time with no diagnosis and no particular findings (I did have some abnormalities on testing, but nothing specific for MS).
I think it's absolutely true that some people live most or all their lives with strange symptoms and no diagnosis, as your neuro said. A PCP said that to me once, too.
If you've had 4 years of tests and exams and no findings of note, the best thing to do is focus on your life and to make your doctor visits and your worry COMMENSURATE with your symptoms.
In other words, if you're having sensory symptoms that don't hinder your life, don't see a doctor about them OR worry about them. Just let them be a part of you--your "friendly neighborhood Lhermitte's"--without letting them significantly distract you from your life.
If you happen to develop symptoms that seem significant or are seriously hampering your functioning, see your regular doctor (and/or inform your neuro, if he wants to follow you) and see what's up with them and what you can do about them.
But don't EXPECT that you'll get further symptoms, because you might not--even if old ones recur. Or you might get new ones but nothing that would be taken too seriously. You've been at this long enough that you probably have a fairly good idea of what the doctors will consider serious and what they really won't care about.
Get symptom relief when you need it. Otherwise, don't worry and don't push for a diagnosis, because you clearly aren't going to get one at this point.
(That said, I don't know what all your symptoms are--maybe you are having more than just sensory ones?)
But you should certainly let your neuro know about the Lhermitte's. That is a pretty significant one, even if it's not painful. They may not find anything on MRI even with Lhermitte's, though. (I had two MRIs of my neck, 2 and 6 years after the onset of Lhermitte's, and the cause was not found.)
I know it's heresy to say this on this forum, but sometimes (if your symptoms are not too bad or progressive) you just have to give up on a diagnosis. If a diagnosis comes (later), it comes; if not, it doesn't. You gotta go with the flow and not let worry consume you. Because sometimes things go haywire with our bodies but just not bad enough or specifically enough that doctors can see it objectively or put a name to it. It's just the way it is.
Take care,
Nancy
I think it's absolutely true that some people live most or all their lives with strange symptoms and no diagnosis, as your neuro said. A PCP said that to me once, too.
If you've had 4 years of tests and exams and no findings of note, the best thing to do is focus on your life and to make your doctor visits and your worry COMMENSURATE with your symptoms.
In other words, if you're having sensory symptoms that don't hinder your life, don't see a doctor about them OR worry about them. Just let them be a part of you--your "friendly neighborhood Lhermitte's"--without letting them significantly distract you from your life.
If you happen to develop symptoms that seem significant or are seriously hampering your functioning, see your regular doctor (and/or inform your neuro, if he wants to follow you) and see what's up with them and what you can do about them.
But don't EXPECT that you'll get further symptoms, because you might not--even if old ones recur. Or you might get new ones but nothing that would be taken too seriously. You've been at this long enough that you probably have a fairly good idea of what the doctors will consider serious and what they really won't care about.
Get symptom relief when you need it. Otherwise, don't worry and don't push for a diagnosis, because you clearly aren't going to get one at this point.
(That said, I don't know what all your symptoms are--maybe you are having more than just sensory ones?)
But you should certainly let your neuro know about the Lhermitte's. That is a pretty significant one, even if it's not painful. They may not find anything on MRI even with Lhermitte's, though. (I had two MRIs of my neck, 2 and 6 years after the onset of Lhermitte's, and the cause was not found.)
I know it's heresy to say this on this forum, but sometimes (if your symptoms are not too bad or progressive) you just have to give up on a diagnosis. If a diagnosis comes (later), it comes; if not, it doesn't. You gotta go with the flow and not let worry consume you. Because sometimes things go haywire with our bodies but just not bad enough or specifically enough that doctors can see it objectively or put a name to it. It's just the way it is.
Take care,
Nancy
Hey there ...... good evening!
To answer your few questions-- so far, all my symptoms are/were sensory.
i initally went to my gp for tingling/buzzing down my thigh (i thought it was my siatic nerve from running too much at the gym)
and it just went sideways from there.
I basically have only weird sensations, that last a couple days - to a week or even more. this is a looong strech for me, prob 8 days or so now.
I have never had it on my upper body, just pelvic area - down to my feet, one side, or the other, or the knee or the butt, or the thigh, just as you described.
It wasn't untill the neck flexion, that I started really loosing my mind over this.
I actually could have accepted 'stress' as a dx, but now i say, "well stress dosen't make me buzz, JUST when I put my neck down!!!"
I don't know, my gp said because it's STILL happening - on and off, and never really went away for too long- *a year tops* that we should redo neck MRI and see if anything is 'different'.
A part of me wants to go, a part of me dosen't, I figured after 9 flippin MRI's commin in negative, when is enough enough?
I wish I could stop worrying Nancy, and I will take your words to heart. Believe me, at times I do ok... but when the buzzin is bad, so is my mindset.
(ex. today, I was fine and worry free--- as the night rolled on, suddenly the buzzing was getting worse, EVERYTIME i looked down, everytime I moved a certain way..... then I wind up posting here- because the boyfriend just can't take hearing about the buzzing one more time!)
I have him and every other loved one saying, "it's just a pinched nerve" "it's stress", "I buzz all the time too!"
Urgh,
They have no Idea what we are talkin about!!!!
Thank you for your time.
Cass
To answer your few questions-- so far, all my symptoms are/were sensory.
i initally went to my gp for tingling/buzzing down my thigh (i thought it was my siatic nerve from running too much at the gym)
and it just went sideways from there.
I basically have only weird sensations, that last a couple days - to a week or even more. this is a looong strech for me, prob 8 days or so now.
I have never had it on my upper body, just pelvic area - down to my feet, one side, or the other, or the knee or the butt, or the thigh, just as you described.
It wasn't untill the neck flexion, that I started really loosing my mind over this.
I actually could have accepted 'stress' as a dx, but now i say, "well stress dosen't make me buzz, JUST when I put my neck down!!!"
I don't know, my gp said because it's STILL happening - on and off, and never really went away for too long- *a year tops* that we should redo neck MRI and see if anything is 'different'.
A part of me wants to go, a part of me dosen't, I figured after 9 flippin MRI's commin in negative, when is enough enough?
I wish I could stop worrying Nancy, and I will take your words to heart. Believe me, at times I do ok... but when the buzzin is bad, so is my mindset.
(ex. today, I was fine and worry free--- as the night rolled on, suddenly the buzzing was getting worse, EVERYTIME i looked down, everytime I moved a certain way..... then I wind up posting here- because the boyfriend just can't take hearing about the buzzing one more time!)
I have him and every other loved one saying, "it's just a pinched nerve" "it's stress", "I buzz all the time too!"
Urgh,
They have no Idea what we are talkin about!!!!
Thank you for your time.
Cass
Hi Cass--yes, I agree, it's easy to kind of forget about symptoms when they're not too much present, but then when it starts up again, your mind starts going, "What the....?? There has to be SOMETHING causing that!"
Then... you just have to remind yourself that (1) they will probably not discover the cause; and (2) nobody else (your boyfriend, etc.) wants to hear about it more than, say, two or three times total.
I used to be surprised and hurt that my relatives didn't ask more about my "stuff" after the initial "novelty" of the hearing loss, dizziness, and MS suspicion, but then I got over it. Really, people don't want to hear about other people's health problems in most cases, at least not more than once or twice. I know I don't like to hear my husband constantly complain about his arm pain (especially when he won't even tell the doctor about it!) or my mother-in-law insisting on always showing me EXACTLY where it hurts in her hips. I know already, OK!?
If I can't or don't want to do something because of fatigue or dizziness, I just don't do it, and just tell my family so if necessary, and they're fine with it. Once in a blue moon someone will ask "How's your dizziness?" (forgetting that I ever mentioned any other symptoms!) and I just say, "oh, about the same" and leave it at that, or "oh, better and worse, the usual." And that's usually the end of the conversation. That's really the way to go. If someone really wants to know, they'll ask more. They see how you're doing in your everyday life, in your functioning. If you're doing fine, no need to say anything to them. Just keep the weirdness to yourself for the most part. Someday, if and when things get worse, they'll realize there really IS something wrong with you and they'll be sorry, heh heh heh. :) And they'll be in awe of you because you endured it silently all those years. (Tongue in cheek here, that doesn't happen, but it's fun to think about it! :)
In other words, don't let your symptoms come into relationships with others unless they are bad enough that you need to let someone know for some reason. It's a little hurtful at first, but then you realize that it doesn't matter (and they still love you).
I would say if you've had "9 flippin' MRIs" in 4 years, it's OK to just let things go, unless things get significantly worse. But DO tell your neuro about the Lhermitte's. If he/she suggests another MRI, ask them if they think it's really worthwhile, and then make your decision based on what you think you need to do to achieve peace of mind.
Good luck!
Nancy
Then... you just have to remind yourself that (1) they will probably not discover the cause; and (2) nobody else (your boyfriend, etc.) wants to hear about it more than, say, two or three times total.
I used to be surprised and hurt that my relatives didn't ask more about my "stuff" after the initial "novelty" of the hearing loss, dizziness, and MS suspicion, but then I got over it. Really, people don't want to hear about other people's health problems in most cases, at least not more than once or twice. I know I don't like to hear my husband constantly complain about his arm pain (especially when he won't even tell the doctor about it!) or my mother-in-law insisting on always showing me EXACTLY where it hurts in her hips. I know already, OK!?
If I can't or don't want to do something because of fatigue or dizziness, I just don't do it, and just tell my family so if necessary, and they're fine with it. Once in a blue moon someone will ask "How's your dizziness?" (forgetting that I ever mentioned any other symptoms!) and I just say, "oh, about the same" and leave it at that, or "oh, better and worse, the usual." And that's usually the end of the conversation. That's really the way to go. If someone really wants to know, they'll ask more. They see how you're doing in your everyday life, in your functioning. If you're doing fine, no need to say anything to them. Just keep the weirdness to yourself for the most part. Someday, if and when things get worse, they'll realize there really IS something wrong with you and they'll be sorry, heh heh heh. :) And they'll be in awe of you because you endured it silently all those years. (Tongue in cheek here, that doesn't happen, but it's fun to think about it! :)
In other words, don't let your symptoms come into relationships with others unless they are bad enough that you need to let someone know for some reason. It's a little hurtful at first, but then you realize that it doesn't matter (and they still love you).
I would say if you've had "9 flippin' MRIs" in 4 years, it's OK to just let things go, unless things get significantly worse. But DO tell your neuro about the Lhermitte's. If he/she suggests another MRI, ask them if they think it's really worthwhile, and then make your decision based on what you think you need to do to achieve peace of mind.
Good luck!
Nancy
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
