klc23mom
06-04-2007, 12:38 PM
Uhthoff syndrome --> Uhthoff symptom
A transient temperature-dependent numbness, weakness, or loss of vision. conduction stops in any nerve if the temperature gets too high. In a damaged nerve, e.g., by demyelinization, this shutdown temperature is lowered, and may approach normal body temperature. Transient neurological dysfunction may then appear with a hot shower, exercise, or fever.
klc
A transient temperature-dependent numbness, weakness, or loss of vision. conduction stops in any nerve if the temperature gets too high. In a damaged nerve, e.g., by demyelinization, this shutdown temperature is lowered, and may approach normal body temperature. Transient neurological dysfunction may then appear with a hot shower, exercise, or fever.
klc
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MSNik
06-04-2007, 01:51 PM
Klc, How do I ask you this, without coming across the wrong way? Ill just ask you, but I really hope I dont offend you. Are you researching everything for a reason?
This is why Im asking you this. Im not even sure if you have MS, or waiting for a dx- I honestly cant remember anything about you- but I do worry about you. The amount of research you are doing, is almost unhealthy. Any doctor is going to tell you to stop now! Its one thing, if you have a disease, to learn everything there is to know about it; but quite another thing to be self diagnosing or trying to play "physician". I pray that you are NOT doing that to yourself. Youll make yourself sick trying to figure out what your symtoms mean.
I really didnt want to post this and risk coming across like a know it all...im certainly not- however, after reading 3 posts today from you, I really am concerned that you are trying to find out what is wrong with you via the internet....its just not healthy. Do you think you have a good Neurologist? Do you feel that everything is being done to help you find out what is going on with your body? If you dont- please ask for referrals for a better doctor. If you do, please let the doctor do whatever needs to be done to help you through this. You are actually quoting so many things off the internet, that I fear you are going to overload yourself on "what ifs". I really hope Im wrong and that you have this under control.
I will say a prayer that you are able to find relief from the symtoms which ail you soon! And, Ill also add a prayer that you dont bite my head off thinking IM insane! Im not, and this truly comes from the place which cares about anyone who is suffereing...>I just dont want you to go nuts trying to find out why. Leave that for the guys who make us wait months for appointments, and charge us astronomical amounts to give us opinions!
n
This is why Im asking you this. Im not even sure if you have MS, or waiting for a dx- I honestly cant remember anything about you- but I do worry about you. The amount of research you are doing, is almost unhealthy. Any doctor is going to tell you to stop now! Its one thing, if you have a disease, to learn everything there is to know about it; but quite another thing to be self diagnosing or trying to play "physician". I pray that you are NOT doing that to yourself. Youll make yourself sick trying to figure out what your symtoms mean.
I really didnt want to post this and risk coming across like a know it all...im certainly not- however, after reading 3 posts today from you, I really am concerned that you are trying to find out what is wrong with you via the internet....its just not healthy. Do you think you have a good Neurologist? Do you feel that everything is being done to help you find out what is going on with your body? If you dont- please ask for referrals for a better doctor. If you do, please let the doctor do whatever needs to be done to help you through this. You are actually quoting so many things off the internet, that I fear you are going to overload yourself on "what ifs". I really hope Im wrong and that you have this under control.
I will say a prayer that you are able to find relief from the symtoms which ail you soon! And, Ill also add a prayer that you dont bite my head off thinking IM insane! Im not, and this truly comes from the place which cares about anyone who is suffereing...>I just dont want you to go nuts trying to find out why. Leave that for the guys who make us wait months for appointments, and charge us astronomical amounts to give us opinions!
n
bella67
06-04-2007, 02:57 PM
Nikki,
I would like to say something in response to what you said, and hope you realize you're still my favorite :) , but I think I know where she's coming from. I have to wait 4 long weeks till my Neuro appointment, and I'll be honest, I have been researching stuff on the internet too..lol It's not that I'm obsessed with knowing, or self diagnosing, but it does help pass the time until the doc sees you. It's unfortunate that our society doesn't offer immediate medical care when you're feeling this crappy, but instead we get to sit here and worry.
I don't really care what the terms of different things are, but I do like to look up a symptom here or there and find out where it stems from. It is unhealthy to spend every waking minute thinking you have this or that, but I just had to comment that I think ALOT of us here do surf the web for info. :p
hugs,
Lisa
I would like to say something in response to what you said, and hope you realize you're still my favorite :) , but I think I know where she's coming from. I have to wait 4 long weeks till my Neuro appointment, and I'll be honest, I have been researching stuff on the internet too..lol It's not that I'm obsessed with knowing, or self diagnosing, but it does help pass the time until the doc sees you. It's unfortunate that our society doesn't offer immediate medical care when you're feeling this crappy, but instead we get to sit here and worry.
I don't really care what the terms of different things are, but I do like to look up a symptom here or there and find out where it stems from. It is unhealthy to spend every waking minute thinking you have this or that, but I just had to comment that I think ALOT of us here do surf the web for info. :p
hugs,
Lisa
MSNik
06-04-2007, 04:02 PM
Lisa, youre still one of my favorites too and NO Im not offended. I dont think that IM putting into words what I really mean to say. Desperate responded to another one of my posts and she said it SO well. Its not that its bad to reserach things- but it CAN be really UNhealthy to think you have nailed a disease or think that you have matched up symtoms to a disease and then walk into a doctors office.....there are horror stories about people being "dismissed" becasuse they come across thinking they know what is going on and actually argue with the doctor. How many people have had dx which after 3 or 4 doctors are all coming back saying "in the patients head". This stems from doctors not being able to dx a patient because the patient has already figured out what it is they want to hear. Nothing else.
As far as reading on the web, I still think that asking real people (as in here, this board) is the best way to find out if others have experienced aches, pains, side effects, drugs issues, etc. You cant read about side effects of a drug and understand it as well as you can ask someone who has been there to describe it to you. Also, Having been thru this for as long as I have and having seen as many specialists as I have seen, EVERY SINGLE ONE OF THEM has conclusively told me NOT to research symptoms on the web. Learning about a diagnosed disease is quite different from learning about symptoms. If each of us listed every single symptom we had ever had, which IS MS related, we would all have different diseases, according to the internet. Research a diagnosed disease, but not a symtom...see a doctor for a symtom. Find out why it is happens...but asking "Jeeves" just doesnt sound all that realisitic.
Ill have to find that post which Desperate responded to.She said it soo well. If you research enough symtoms, you WILL convince yourself of what is wrong with you. You can even make your symtoms worse...trust me. Desperate was right on this. And, Truly, researching from websites is only as good as the site you are researching on. How would you know if the info was updated, or if it was found to be false 2 months later? You dont really think they take it down..or update it? There are a few good sites, really and honestly. A few which will tell you all about drugs, drug interaractions as well as diseases. The site which hosts thisn health boards, is an excellent source of information...but again, you have to know what it is you are looking up. If you randomly look up symptoms, especially in a disease as broad as MS, youre not likely to get all the info in the correct sequence.
Does that make sense?
n
As far as reading on the web, I still think that asking real people (as in here, this board) is the best way to find out if others have experienced aches, pains, side effects, drugs issues, etc. You cant read about side effects of a drug and understand it as well as you can ask someone who has been there to describe it to you. Also, Having been thru this for as long as I have and having seen as many specialists as I have seen, EVERY SINGLE ONE OF THEM has conclusively told me NOT to research symptoms on the web. Learning about a diagnosed disease is quite different from learning about symptoms. If each of us listed every single symptom we had ever had, which IS MS related, we would all have different diseases, according to the internet. Research a diagnosed disease, but not a symtom...see a doctor for a symtom. Find out why it is happens...but asking "Jeeves" just doesnt sound all that realisitic.
Ill have to find that post which Desperate responded to.She said it soo well. If you research enough symtoms, you WILL convince yourself of what is wrong with you. You can even make your symtoms worse...trust me. Desperate was right on this. And, Truly, researching from websites is only as good as the site you are researching on. How would you know if the info was updated, or if it was found to be false 2 months later? You dont really think they take it down..or update it? There are a few good sites, really and honestly. A few which will tell you all about drugs, drug interaractions as well as diseases. The site which hosts thisn health boards, is an excellent source of information...but again, you have to know what it is you are looking up. If you randomly look up symptoms, especially in a disease as broad as MS, youre not likely to get all the info in the correct sequence.
Does that make sense?
n
parisiancat
06-04-2007, 04:32 PM
At my first neuro appointment, when he told me he thought I had MS, it was a surprise to me. Although I had an attack last year, it was misdiagnosed as a virus and all the lasting symtoms were put down to the same thing and I was happy with that and didn't question it. So I suppose it is important to be informed so you can push to see the doctors and get the help you need.
However, I also think it's dangerous to read too much into it. The mind is a very powerful thing. For over a year I had had two constant symptoms. But nothing else. After seeeing the neuro, I went online and read lists of symptoms and within two days suddenly developed a very wide range of mild and brief symptoms. I don't believe they were real. They were my reaction to a shock. When I got busy and distracted at work, guess what, they dissappeared.
Klc, I hope you get a dx (whatever it may be) and some peace soon.
Cat
However, I also think it's dangerous to read too much into it. The mind is a very powerful thing. For over a year I had had two constant symptoms. But nothing else. After seeeing the neuro, I went online and read lists of symptoms and within two days suddenly developed a very wide range of mild and brief symptoms. I don't believe they were real. They were my reaction to a shock. When I got busy and distracted at work, guess what, they dissappeared.
Klc, I hope you get a dx (whatever it may be) and some peace soon.
Cat
bella67
06-04-2007, 04:36 PM
Oh, Nik
I totally agree with everything you wrote. This is why I'm here everyday and I'm not diagnosed yet. Basically all we really want is to relate to one another, and this board does that. My family is the most neurotic, and probably that's where I got it from. We would sit around talking in the evening saying stuff like "oh, i have this weird tickle in my throat..have you ever had that??", and of course we'd all say "OH yeah, I've had that many times", because it was reassuring and put our minds at ease. I think sometimes we surf the web so we can look something up and hope to read, "ok, yeah, it's nothing!!". But instead what we find is stuff that is really scary and inaccurate, so I totally get what both you and desperate said.
On a side note all that neurotic behavior in my family has totally backfired on me. When I tell my mom something is wrong she'll immediately dismiss it as nothing and will come up with some common reason why it would happen. Unfortunately, my symptoms were episodic and were pretty terrifying. So, even if she wanted me to feel better, it didn't do the trick this time. *sigh*
I read the other posts too between you and nuff. I'm also in the same boat with the kids being home. I was used to that down time where I could recoup before they came home. Now it's being "on" all day long and it is a challenge, I must say. :dizzy:
Hope you get through your day as quickly as I'd like to get through mine!
hugz,
Lisa
I totally agree with everything you wrote. This is why I'm here everyday and I'm not diagnosed yet. Basically all we really want is to relate to one another, and this board does that. My family is the most neurotic, and probably that's where I got it from. We would sit around talking in the evening saying stuff like "oh, i have this weird tickle in my throat..have you ever had that??", and of course we'd all say "OH yeah, I've had that many times", because it was reassuring and put our minds at ease. I think sometimes we surf the web so we can look something up and hope to read, "ok, yeah, it's nothing!!". But instead what we find is stuff that is really scary and inaccurate, so I totally get what both you and desperate said.
On a side note all that neurotic behavior in my family has totally backfired on me. When I tell my mom something is wrong she'll immediately dismiss it as nothing and will come up with some common reason why it would happen. Unfortunately, my symptoms were episodic and were pretty terrifying. So, even if she wanted me to feel better, it didn't do the trick this time. *sigh*
I read the other posts too between you and nuff. I'm also in the same boat with the kids being home. I was used to that down time where I could recoup before they came home. Now it's being "on" all day long and it is a challenge, I must say. :dizzy:
Hope you get through your day as quickly as I'd like to get through mine!
hugz,
Lisa
MSNik
06-04-2007, 05:11 PM
Hugs Lisa. I am with you, know that. ok?? I just got more bad news..my MS Support group, thru the Society, just quit on me! THey are no longer having their bi-monthly meetings, which I really counted on! And, yeah, there are other groups, but the closest one is about 45 minutes away and the one and only time I went to that one, it was full of "old timers" who have never had the thrill of Interferon Injections ....its very sad. Im bumming big time now. BUt, your story made me remember, IM not alone. Thank you for that. Youlll get your dx sooner than later chic. promise.
N
N
bella67
06-04-2007, 07:24 PM
Oh man, that's a real bummer, sorry Nik! Well, I wish we could post sites on here but there is this one I'll have to describe in code..lol It's a "meetup". You know those places that have online groups, and once a month they UMM..meet. So, if I were you i'd search "meetup", and see what ya get. :) This particular site has a group in your area for MS. Hope that helps..
*I'm laughin here just reading what I wrote* hee he
*I'm laughin here just reading what I wrote* hee he