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Testosterone and MS/Negative LP
I'm new! First of all, I would like to say that it is quite amazing that so many people come together to support and help each other. A couple months ago I was told that I have MS. I don't think this is the case, especially after a negative LP didn't back up the abnormal MRI. I went to the doctor due to a completely unrelated circumstance. An accident which they did a CT scan and the radiologist saw an abnormality and suggested a nuerologist and MRI. MRI showed multiple lesions (no idea how many exactly, from MRI and what he pointed at, six+) but no active lesions. A spine and neck MRI was done but I don't have the results, the fact that the doctor hasn't called me in early again tells me that more than likely it was normal. I think he is looking for the possibility of PPMS. I read that you have a much greater chance of a negative LP with PPMS because it tends to be noninflamatory. Is that true?
I can't recall any "attack" or relapse. I do have many types of symptoms, shaking, slow/slurred speech, frequent urination, fatigue, fogginess, heat intolerence, stumbling/tripping, etc. All of which I can or have in the past reasoned away with stress, caffiene, nicotine, and being 30 now and not 15 anymore. None of these symptoms are severe but when something like this diagnosis comes up you wonder if they really are normal or not. The doctor also thinks my left leg is stiff and my right arm/side is weaker. I'm very left handed though.
I still think that the lesions are old injuries or an infection I might have had, something of that nature (what's the possibilty of that?). Next appointment I believe the doctor will tell me I have PPMS or benign MS depending on spinal MRI results. He also wants to discuss treatment options at the next appointment including choosing no treatment. I don't see any reason for treatment at this time, especially since I am not convinced that I have a disease. A positive LP would have convinced me. But, getting on to my original question before I went wayyyy further into this than I expected, I did read a study about testosterone in men with mild MS. Does anybody know about this? This is a treatment I would consider due to it's mildness and possible benefits if I did have MS. I previously thought that testosterone therapy was just for sexual issues but I looked into testosterone gel, which they were using for the study, and it seems to treat or help depression, fatigue, stamina, immune system, all the guys in the study showed improved cognitive function and no progression of MS, and none of them had any side effects or went out of the normal ranges for testosterone levels. But I can only find one study done, has anybody ever heard of anything more on this? Is it a reasonable treatment option versus no treatment? Also, if anybody has any input on my "self-diagnosing" or situation it would be appreciated! Thank you.
I can't recall any "attack" or relapse. I do have many types of symptoms, shaking, slow/slurred speech, frequent urination, fatigue, fogginess, heat intolerence, stumbling/tripping, etc. All of which I can or have in the past reasoned away with stress, caffiene, nicotine, and being 30 now and not 15 anymore. None of these symptoms are severe but when something like this diagnosis comes up you wonder if they really are normal or not. The doctor also thinks my left leg is stiff and my right arm/side is weaker. I'm very left handed though.
I still think that the lesions are old injuries or an infection I might have had, something of that nature (what's the possibilty of that?). Next appointment I believe the doctor will tell me I have PPMS or benign MS depending on spinal MRI results. He also wants to discuss treatment options at the next appointment including choosing no treatment. I don't see any reason for treatment at this time, especially since I am not convinced that I have a disease. A positive LP would have convinced me. But, getting on to my original question before I went wayyyy further into this than I expected, I did read a study about testosterone in men with mild MS. Does anybody know about this? This is a treatment I would consider due to it's mildness and possible benefits if I did have MS. I previously thought that testosterone therapy was just for sexual issues but I looked into testosterone gel, which they were using for the study, and it seems to treat or help depression, fatigue, stamina, immune system, all the guys in the study showed improved cognitive function and no progression of MS, and none of them had any side effects or went out of the normal ranges for testosterone levels. But I can only find one study done, has anybody ever heard of anything more on this? Is it a reasonable treatment option versus no treatment? Also, if anybody has any input on my "self-diagnosing" or situation it would be appreciated! Thank you.
Hi Joe,
Welcome to the MS forum at MedHelp. We're all happy to have you here.
Everyone above has given you wonderful advice - we cannot stress enough to you the importance of starting DMD's as soon as possible.
You cannot predict when this disease is going to go off and take out a critical function - it may never happen, but then again it could happen tomorrow. Is that a chance you want to take?
I hope you will stick with us here and keep us informed if you find any information about the testosterone link.
my best,
Lulu
Welcome to the MS forum at MedHelp. We're all happy to have you here.
Everyone above has given you wonderful advice - we cannot stress enough to you the importance of starting DMD's as soon as possible.
You cannot predict when this disease is going to go off and take out a critical function - it may never happen, but then again it could happen tomorrow. Is that a chance you want to take?
I hope you will stick with us here and keep us informed if you find any information about the testosterone link.
my best,
Lulu
Welcome to the neighborhood.
My oldest brother's been reading my regular mass e-mails describing my ongoing symptoms, and wrote to suggest that it might be, at least in part, a testosterone deficiency that runs in families to some degree; he 'd just begun treatment for it himself when he suggested this three months ago. He now says he feels like a new man. I faxed a copy of his e-mail to my PCP, and he ordered a test, which as luck would have it, was quite abnormally low. I'm seeing an endocrinologist later in the week. However, my limited reading on the topic hasn't tied that problem to most of my symptoms, only some.
None of this has any bearing on the fact that I must agree 110% or more with essdipity above. If your doctor will prescribe a DMD, you cannot afford not to take it. It is possible that this disease will never cause you any great concern, but that is sure not the way to bet. If there is something out there that is likely to help keep you from undergoing the living hell that has possessed some of our peers here, you must try it.
My oldest brother's been reading my regular mass e-mails describing my ongoing symptoms, and wrote to suggest that it might be, at least in part, a testosterone deficiency that runs in families to some degree; he 'd just begun treatment for it himself when he suggested this three months ago. He now says he feels like a new man. I faxed a copy of his e-mail to my PCP, and he ordered a test, which as luck would have it, was quite abnormally low. I'm seeing an endocrinologist later in the week. However, my limited reading on the topic hasn't tied that problem to most of my symptoms, only some.
None of this has any bearing on the fact that I must agree 110% or more with essdipity above. If your doctor will prescribe a DMD, you cannot afford not to take it. It is possible that this disease will never cause you any great concern, but that is sure not the way to bet. If there is something out there that is likely to help keep you from undergoing the living hell that has possessed some of our peers here, you must try it.
When I had my first LP, I had only one band. So in all reality they consider that negative. I have lesions in my brain and one in my spinal cord. I have been diagnosed for 13 years. I would suspect that if I had another repeat LP, more band would now show.
I highly recommend that you get on a disease modifying drug (DMD) as soon as possible. Waiting for an LP to turn up O bands, is risking your physical well being when everything you talk about, sounds like MS.
I would much rather take a drug that may slow down my disease, than take nothing and have my disease progress to a point where I can't reverse it.
As I understand it, Montel Williams takes estrogen to help with his MS. I have not heard anything about testosterone treatment. Because of the lack of estrogen, I believe I read that men may have a more progressive course of the disease, while women normally do not. (Although of course, there are women that do progress and become totally disabled by MS)
I wish you the best of luck. Please consider a DMD soon, so you can protect yourself.
Heather
I highly recommend that you get on a disease modifying drug (DMD) as soon as possible. Waiting for an LP to turn up O bands, is risking your physical well being when everything you talk about, sounds like MS.
I would much rather take a drug that may slow down my disease, than take nothing and have my disease progress to a point where I can't reverse it.
As I understand it, Montel Williams takes estrogen to help with his MS. I have not heard anything about testosterone treatment. Because of the lack of estrogen, I believe I read that men may have a more progressive course of the disease, while women normally do not. (Although of course, there are women that do progress and become totally disabled by MS)
I wish you the best of luck. Please consider a DMD soon, so you can protect yourself.
Heather
Hi, Joe. I've read something on testosterone and MS but my memory is shaky on this so I'll pass on that part.
As to the rest, it seems to me you're in a place familiar to many here. It's called DENIAL. You have many brain lesions (you'd be surprised how many people have MS discovered by accident), you have symptoms galore, you have findings upon neuro exam that are very indicative of MS. So the probability you do have MS is overwhelming.
A positive LP is NOT a requirement for diagnosis, so I think you should leave that out of your equation one way or the other. I don't really know which variety you may have. That entirely depends on whether there are periods when your symptoms are minimal or absent, with subsequent reappearance of the same or different symptoms. Those with RRMS (the huge majority) often don't have clear remission of their symptoms. Sometimes the lingering effects can be quite bad, yet they're still RR. This is something your doctor will explore with you.
I do want to make clear that there's no such thing as benign MS. At the end of life, if MS has caused little pain and minimal interference with a full life, then the term benign might be appropriate. Not till then. MS can light up and cause devastating symptoms at any point before that. You never know where lesions may form, and lesions are the direct cause of inability to walk, urinary or bowel incontinence, mental confusion and decline, and a great many other awful disorders.
Neuros who specialize in MS and who are current in all medical aspects of it will prescribe one of the DMDs right away. This is important even if it's not yet clear what type of MS you have. Don't gamble on your health. I don't know how to say that more emphatically. We have quite a few members here who for one reason or other did not use a DMD early in their disease (when they're most effective). Now most are full of regrets, not to mention considerably disabled.
I urge you to read up on all aspects of this disease. Our Health Pages (far upper right of screen) are an excellent starting point. Please confer with your doctor and take a proactive, scentifically verified stand against this awful disease.
ess
As to the rest, it seems to me you're in a place familiar to many here. It's called DENIAL. You have many brain lesions (you'd be surprised how many people have MS discovered by accident), you have symptoms galore, you have findings upon neuro exam that are very indicative of MS. So the probability you do have MS is overwhelming.
A positive LP is NOT a requirement for diagnosis, so I think you should leave that out of your equation one way or the other. I don't really know which variety you may have. That entirely depends on whether there are periods when your symptoms are minimal or absent, with subsequent reappearance of the same or different symptoms. Those with RRMS (the huge majority) often don't have clear remission of their symptoms. Sometimes the lingering effects can be quite bad, yet they're still RR. This is something your doctor will explore with you.
I do want to make clear that there's no such thing as benign MS. At the end of life, if MS has caused little pain and minimal interference with a full life, then the term benign might be appropriate. Not till then. MS can light up and cause devastating symptoms at any point before that. You never know where lesions may form, and lesions are the direct cause of inability to walk, urinary or bowel incontinence, mental confusion and decline, and a great many other awful disorders.
Neuros who specialize in MS and who are current in all medical aspects of it will prescribe one of the DMDs right away. This is important even if it's not yet clear what type of MS you have. Don't gamble on your health. I don't know how to say that more emphatically. We have quite a few members here who for one reason or other did not use a DMD early in their disease (when they're most effective). Now most are full of regrets, not to mention considerably disabled.
I urge you to read up on all aspects of this disease. Our Health Pages (far upper right of screen) are an excellent starting point. Please confer with your doctor and take a proactive, scentifically verified stand against this awful disease.
ess
Welcome to the forum!
I honestly know nothing about testosterone and MS. I can say however that you do not have to have a positive lp, or even have an lp done, in order to get your dx. I got my dx with a neg lp. Also, while my MS was probably benign for a long time, it no longer that way and so I am taking medication to help slow the progression. HTH
ST
I honestly know nothing about testosterone and MS. I can say however that you do not have to have a positive lp, or even have an lp done, in order to get your dx. I got my dx with a neg lp. Also, while my MS was probably benign for a long time, it no longer that way and so I am taking medication to help slow the progression. HTH
ST
Hi Joe,
I am not sure about the testosterone question but I did find the information on the LP issue at the Yellow Icon Health Pages at the right hand side on the webpage. It is called:
Can you diagnosing MS with an LP that is negative for O bands
I am sure otherw will be along sometime - but I wanted to chime in with what I found. Have a good day.
Janette
I am not sure about the testosterone question but I did find the information on the LP issue at the Yellow Icon Health Pages at the right hand side on the webpage. It is called:
Can you diagnosing MS with an LP that is negative for O bands
I am sure otherw will be along sometime - but I wanted to chime in with what I found. Have a good day.
Janette
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