Aa
New here, and scared
Hi, I am at the start of a road which may or may not happen but reading posts here, I'm seeing myself in many of them. I love the Who are You? thread - and will post there for sure! I don't like being a person who joins a forum and asks for help in their first posting, but I really need to connect with some people.
I guess I'll get symptoms out of the way - and you've probably heard them all before.
I am 43, mother of one, very active and reasonably fit. Sedentary job (computer).
June - incredible bouts of itching started. Drove me insane. Thought I was allergic to something. Still get them intermittently. No rash, no redness, just a maddening intense itch. Mainly on torso.
July 2007 intense "buzzing" over my pubic area began, frequency varied but I timed at 3 seconds apart. No pain. A couple of weeks later it stopped.
Mid-August 2007 A feeling of warm water washing down my right thigh. I was washing dishes and thought I'd spilled water all over myself! The feeling has never gone away. It got hotter and hotter over a couple of weeks, till it felt like fire. But my skin was cool to touch.
Early September 2007 Went to my doctor about it. I had recently had a miscarriage and he felt it was hormonal. Blood tests for fertility hormones and general blood work. All fine.
By first week October 2007 the burning was in both legs, sometimes on thighs only, and sometimes down to my feet. Started becoming quite clumsy. I now stagger slightly when I get up out of a chair and have to get up quite carefully.
Second week October 2007 - I FINALLY realised that when I bent my head directly forward the burning feeling became much worse, turned into a feeling like electric shock jolting to my feet.
Went back to doctor, told him, he tested reflexes, said I was exhibiting Lhermitte's sign and sent me for a spinal CAT scan to discount any "bony" issues. (I have a prolapsed disc injury from 4 years ago which I watch and gives me no pain or problems) Said he wanted me to have an MRI immediately but he can't authorize it as I would have to be referred to a neurologist. Still no pain as such, in neck or otherwise.
I had never heard of Lhermitte's sign and am very unknowledgable about MS. I know I haven't had a scan yet (happening on Monday), but now I write all these issues down I am very very apprehensive. Does anyone have any insights, words of advice? I also understand Lhermitte's can manifest with spinal tumours etc.
Thank you
Welcome! Welcome! Welcome!
You have come to the right place. One of my first symptoms of MS started with Lhermitte's. It lasted for several months during my first attack, almost 12 years ago. Before I knew what it was and had been to the Neurologist, it scared the dickens out of me. This was followed up by total numbness in my right torso. I only noticed it, beause when taking a shower, I noticed I could not feel the warm water on my right side. Even after getting out of the shower and drying off thoroughly, it felt like water running down my leg.
The "water down the leg" symptom continued for weeks. I already had a Neuro from the past, whom I saw for migraines, so I made an appointment with him. The very first visit, he ordered a spinal MRI. He told me in the office that day, that he suspected MS or a narrowing of the spinal canal.
When the MRI testing was completed, his nurse (his nurse, not him...how rude and unprofessional) called to say that they found a large highlighted lesion on the right side of my spinal cord, which "suggest demyelinating disease of unknown origin," but the doctor thought it was MS. The radioloigist suggested an MRI of the brain, if one had not been done. Low and behold, that MRI came back with 7 highlighted lesions in the brain.
The buzzing down my spine and the "feeling of water running down my leg," was described to me by the Neuro as coming from the lesion in my spine. It can happen anyway in the spine. Mine was and is in the thoraric region.
So much of what you describe sounds exactly what so many of my symptoms were and still are, 12 years later. The Lhermitte's only occurs occasionally, now. As you know, L'hermittes can occur from; as you say, spinal tumors, bulging disks, or narrowing of the spinal space, just as you say. The other symtpoms that you describe are suggestive of neurological problems.
I hope that you will seek an appointment with a specialist right away. You are "at that age," where MS can sometimes rear it's ugly head. Better to find out what is wrong that suspect MS and it be something else.
This forum has some of the greatest people on the Internet. You have found a "womb" of sorts; where you will be nutured, cared for and coddled, no matter where these symptoms land you. If it's in the world of "MS," then you truly are in the right place to get the most support. Again...welcome.
Best Wishes, Heather
You have come to the right place. One of my first symptoms of MS started with Lhermitte's. It lasted for several months during my first attack, almost 12 years ago. Before I knew what it was and had been to the Neurologist, it scared the dickens out of me. This was followed up by total numbness in my right torso. I only noticed it, beause when taking a shower, I noticed I could not feel the warm water on my right side. Even after getting out of the shower and drying off thoroughly, it felt like water running down my leg.
The "water down the leg" symptom continued for weeks. I already had a Neuro from the past, whom I saw for migraines, so I made an appointment with him. The very first visit, he ordered a spinal MRI. He told me in the office that day, that he suspected MS or a narrowing of the spinal canal.
When the MRI testing was completed, his nurse (his nurse, not him...how rude and unprofessional) called to say that they found a large highlighted lesion on the right side of my spinal cord, which "suggest demyelinating disease of unknown origin," but the doctor thought it was MS. The radioloigist suggested an MRI of the brain, if one had not been done. Low and behold, that MRI came back with 7 highlighted lesions in the brain.
The buzzing down my spine and the "feeling of water running down my leg," was described to me by the Neuro as coming from the lesion in my spine. It can happen anyway in the spine. Mine was and is in the thoraric region.
So much of what you describe sounds exactly what so many of my symptoms were and still are, 12 years later. The Lhermitte's only occurs occasionally, now. As you know, L'hermittes can occur from; as you say, spinal tumors, bulging disks, or narrowing of the spinal space, just as you say. The other symtpoms that you describe are suggestive of neurological problems.
I hope that you will seek an appointment with a specialist right away. You are "at that age," where MS can sometimes rear it's ugly head. Better to find out what is wrong that suspect MS and it be something else.
This forum has some of the greatest people on the Internet. You have found a "womb" of sorts; where you will be nutured, cared for and coddled, no matter where these symptoms land you. If it's in the world of "MS," then you truly are in the right place to get the most support. Again...welcome.
Best Wishes, Heather
Hey Michela,
We handle the symptoms by trying to get on with our lives the best we can..... and trying not to get too obsessed with our health despite what is going on.
And staying as cheerful and maintaining as much self esteem as possible while making rounds of doctors, many of whom are sceptical (some blantantly so) that we are actually having issues!
If you are lucky you will have a clear picture that can be easily diagnosed and labelled. If not, it will take a long frustrating time....
Am not sure that labelling is all that good, but at least it could mean you are taken seriously...
Hang in there...
S
S
We handle the symptoms by trying to get on with our lives the best we can..... and trying not to get too obsessed with our health despite what is going on.
And staying as cheerful and maintaining as much self esteem as possible while making rounds of doctors, many of whom are sceptical (some blantantly so) that we are actually having issues!
If you are lucky you will have a clear picture that can be easily diagnosed and labelled. If not, it will take a long frustrating time....
Am not sure that labelling is all that good, but at least it could mean you are taken seriously...
Hang in there...
S
S
Hi Terrie - I have been reading your posts too - yes what a weird place (not here, just generally!) to be in.
Thanks for the advice. I am going to be assertive push for a neurologist referral immediately. I can't see my doctor till next Thursday, as scan results won't be back for certain until sometime Wednesday.
:)
Thank you Sally for replying - and I see how supportive and proactive people are here!
Amazing that the process of a diagnosis is so long, frustrating and painful.
How do you handle your symptoms as you go for more tests, wait for results etc?
I am flabbergasted that when people present with such intense symptoms, with what doctors know, that the process is so long, the way many people are treated etc etc . I DO understand the need for a correct diagnosis, whatever that happens to be ... but wow.
Amazing that the process of a diagnosis is so long, frustrating and painful.
How do you handle your symptoms as you go for more tests, wait for results etc?
I am flabbergasted that when people present with such intense symptoms, with what doctors know, that the process is so long, the way many people are treated etc etc . I DO understand the need for a correct diagnosis, whatever that happens to be ... but wow.
Good morning! I am not too familiar with Lhermitte's sign, but I am sure as our forum "angels" wake up they will have more information for you. I share two of your symptoms, the feeling of warm water, or to me I alway think I am bleeding because it feels thicker than water & it seems to happen along the side of my nose near my cheek. I also share the balance problem. I feel like I am going to tip or fall over, usually to the side. Are you going to see a neurologist? I have been told from the forum that I should get a great MS specialist. I have not been formally diagnosed with MS, but seem to have many symptoms & something is definitely wrong. I am new here also & have never had any interest in joining an online group until I came upon this forum. Much support & info. is to be found here. Try not to be afraid, but keep on your doctors to find out what exactly is going on with you. Don't let them downplay your symptoms, you know yourself and when something is wrong.
Good luck to you and make sure you get that referral,
Terrie
Good luck to you and make sure you get that referral,
Terrie
Hi,
welcome. Sorry you had to find your way here though.
I don't have any answers yet. But your description rings some bells....
For me, my symptoms also started with itching.... over a period of months - maybe 8 months.... I really thought I was having an allergic reaction to something... and I am a pretty allergic person, but was able to ignore it successfully for quite a while.... Late last year I saw an allergy dr and although allergy testing showed clearly that I do have allergies, nothing has shown clearing defineable. I was also diagnosed with asthma.
My allergy dr thinks that allergy stuff is just a symptom of something else and doesn't think "allergies" are the root cause of what's going on. She has been consulting with her mentors on my case and they are scratching their heads....
It then progressed to burning sensations which were at first intermittent but are really intense now... (this has been over a period of about 5 months).... most of my body feels like has been over applied with bengay/dencorub.... my right ear feels like something hot has been poured into it...
Had all the tests about 2 months ago and nothing showed clearing, though there are some non-specific abnormal test results.... Time to go start making doctor rounds again....
Hang out here..... some of what you are describing could be MS. most important is to get yourself referred to a neurologist and get some testing, and hopefully some diagnosis and treatment happening....
People here are very warm and supportive, and nothing you can say is innappropriate as we journey this wierd place we have found ourselves in...
Sally
welcome. Sorry you had to find your way here though.
I don't have any answers yet. But your description rings some bells....
For me, my symptoms also started with itching.... over a period of months - maybe 8 months.... I really thought I was having an allergic reaction to something... and I am a pretty allergic person, but was able to ignore it successfully for quite a while.... Late last year I saw an allergy dr and although allergy testing showed clearly that I do have allergies, nothing has shown clearing defineable. I was also diagnosed with asthma.
My allergy dr thinks that allergy stuff is just a symptom of something else and doesn't think "allergies" are the root cause of what's going on. She has been consulting with her mentors on my case and they are scratching their heads....
It then progressed to burning sensations which were at first intermittent but are really intense now... (this has been over a period of about 5 months).... most of my body feels like has been over applied with bengay/dencorub.... my right ear feels like something hot has been poured into it...
Had all the tests about 2 months ago and nothing showed clearing, though there are some non-specific abnormal test results.... Time to go start making doctor rounds again....
Hang out here..... some of what you are describing could be MS. most important is to get yourself referred to a neurologist and get some testing, and hopefully some diagnosis and treatment happening....
People here are very warm and supportive, and nothing you can say is innappropriate as we journey this wierd place we have found ourselves in...
Sally
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