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Me and my fiance BOTH have MS!?
This whole thing is completely crazy and the pieces just dont seem to add up. I've been to 2 neurologists, 1 MS specialist, and scheduled to see 2 more MS specialists. I don't have any real answers at this point... they all just seem to think I have MS, case closed.
I am a 26 year old, otherwise healthy male. I was diagnosed in 2004 with optic atrophy due to some fluttering vision in my right eye. A brain MRI was ordered in 2004, which came back "normal".
Within the past 6 months I have been having very mild tingling. Started in my legs, went away, and now is localized completely to my right shoulder / arm / hand. It is not a consistent sensation. It seems to happen for only 20 mins or so, every couple of days. The sensation is an extreme electric shock through my entire shoulder, arm, and hand. When this is occurring I experience Lhermitte's Sign which magnifies the pain. I cant look down at all during these times, its just too painful. Other than those 20 mins a day I am completely normal. My balance, reflexes, etc.. are all normal.
Upon recently reviewing my 2004 chart, the eye doctor is now saying it was optic neuritis, not optic atrophy. Also, went my neurologist saw my 2004 brain MRI, he noticed 2 spots. So my 2004 MRI was not "normal", as was originally reported. That really makes me angry that they missed this in 2004...
Within the past month I have had alot of blood work, brain MRI's, and spine MRI's. I have a 12mm lesion on my cervical spine between C3 and C4 on my right side. This perfectly explains my symptoms, but why is it there? I also have 2-3 small "spots" on my brain. One hasnt changed since 2004. The other 1 or 2 are new since 2004. So with 1 lesion on my spine and 2-3 on my brain... is MS a reasonible diagnosis?? What else could it be?
Last week I finished 4 days of IV steroids to try to calm my symptoms. I had a 7 break, but now my symptoms are back and have happened twice within the last 2 days. This is really frustrating and Im not sure how to keep these electric shocks from happening. One neurologist prescribed Lyrica, which he said would help, but I havent started taking it because I am concerned of the side-effects, especially extreme weight gain. Plus Im not even sure what I have, so taking pills 3 times a day seems odd. No?
I am waiting for results on 2 more blood tests (HTLV and NMO). If these come back negative, I guess the next step is a spinal tap, which I'm not sure of the value of. Any thoughts on that?
The weirdest part is that in 2003 my girlfriend (now fiance) was diagnosed with MS. Her diagnosis makes alot more sense as there is a history of MS in her family and her MRI's were alot more conclusive. But what are the odds of both of us having it. The timing is just too coincidental. She has her first attack the end of 2003, then I have my first attack 6 months later... It just seems so unlikely. Thats why the second neurologist is testing for HTLV and NMO, but what else could it be?
I am really frustrated and confused and could use any input at all.
Thank you.
Jon
I am a 26 year old, otherwise healthy male. I was diagnosed in 2004 with optic atrophy due to some fluttering vision in my right eye. A brain MRI was ordered in 2004, which came back "normal".
Within the past 6 months I have been having very mild tingling. Started in my legs, went away, and now is localized completely to my right shoulder / arm / hand. It is not a consistent sensation. It seems to happen for only 20 mins or so, every couple of days. The sensation is an extreme electric shock through my entire shoulder, arm, and hand. When this is occurring I experience Lhermitte's Sign which magnifies the pain. I cant look down at all during these times, its just too painful. Other than those 20 mins a day I am completely normal. My balance, reflexes, etc.. are all normal.
Upon recently reviewing my 2004 chart, the eye doctor is now saying it was optic neuritis, not optic atrophy. Also, went my neurologist saw my 2004 brain MRI, he noticed 2 spots. So my 2004 MRI was not "normal", as was originally reported. That really makes me angry that they missed this in 2004...
Within the past month I have had alot of blood work, brain MRI's, and spine MRI's. I have a 12mm lesion on my cervical spine between C3 and C4 on my right side. This perfectly explains my symptoms, but why is it there? I also have 2-3 small "spots" on my brain. One hasnt changed since 2004. The other 1 or 2 are new since 2004. So with 1 lesion on my spine and 2-3 on my brain... is MS a reasonible diagnosis?? What else could it be?
Last week I finished 4 days of IV steroids to try to calm my symptoms. I had a 7 break, but now my symptoms are back and have happened twice within the last 2 days. This is really frustrating and Im not sure how to keep these electric shocks from happening. One neurologist prescribed Lyrica, which he said would help, but I havent started taking it because I am concerned of the side-effects, especially extreme weight gain. Plus Im not even sure what I have, so taking pills 3 times a day seems odd. No?
I am waiting for results on 2 more blood tests (HTLV and NMO). If these come back negative, I guess the next step is a spinal tap, which I'm not sure of the value of. Any thoughts on that?
The weirdest part is that in 2003 my girlfriend (now fiance) was diagnosed with MS. Her diagnosis makes alot more sense as there is a history of MS in her family and her MRI's were alot more conclusive. But what are the odds of both of us having it. The timing is just too coincidental. She has her first attack the end of 2003, then I have my first attack 6 months later... It just seems so unlikely. Thats why the second neurologist is testing for HTLV and NMO, but what else could it be?
I am really frustrated and confused and could use any input at all.
Thank you.
Jon
Hi, Tory. I don't have a particular opinion whether you have lyme disease or MS, but it would be most interesting to see your MRI in 10 years. MS untreated will see resolution of lesions also. We have several people here who got their MS diagnosis taken away when their lesions disappeared, only to find years later that they did have it and were now disabled. I have no doubt - NO doubt at all - that there are many people who are misdiagnosed IN BOTH DIRECTIONS. You may very well have Lyme disease which is a great mimic of MS and you're fortunate, because it is curable.
My problem comes with the basic science of the people trying to say all MS is Lyme disease. Or those that say that Lyme disease in the brain and spine IS MS. This really isn't you, unless you are saying that now. But, there are plenty that come on this forum that maintain this. I spent some time on a lyme forum and there were thread after thread about herx'ing on and off for years and years. I consider this bunk and have real problems with the doctors fostering it. Their descriptions of their "herx's" were remarkably like MS relapses. And the herx's reaction does not include all symptoms that anyone suffers going on for weeks at a time. The good lyme stuff from ILADS that I have read state that herx'ing may occur, but only at the beginning of an effective therapy.
As for the studies that have found the spirochetes in MS plaques. The main one was many years ago and subsequent studies have not been able to reproduce the findings. There has been quite a bit of study looking at whether TBI is likely one of the underlying causes/triggers of MS and the data is certainly lacking in my opinion that the two diseases are the same or that TBI is a likely common cause. I have systematically begun reading all of the ILADS "scientific" articles. Some of them, in fact the current #1, is merely an opinion article proposing Lyme as a cause of MS and stating that someone should go study it. Yet, people quote this article as if it proves something.
The best stuff I found was quite convincing that A FEW people do have resistant Borrellia (Lyme) infections needing many, many months of antibiotics and this was confirmed by using PCR techniques to find Borrellia DNA in their CSF. The vast majority cleared with far less time treated with antibiotics (about 6 months if I remember) as proven by several factors, including the persistent disappearance of spirochete DNA from the CSF.
I also take exception to the frequent statement that treatment will continue until the person becomes assymptomatic. If the statement were to include "or no longer improves" it would make sense. Longstanding neuroborreliosis can cause scarring in the CNS. There is no likelihood that scarring will revert to normal brain tissue, by stopping what killed it. When people come here and imply that if people with MS would just embrace the Lyme theory and begin antibiotics they could be completely cured, I think they are offering snake oil. I wish that people would be straight and say what you usually do, that some people with MS may actually have Lyme or something else and encourage good testing.
But, in your various postings you never quite say what you believe your status is. Do you believe you have Multiple Sclerosis and that it is caused by Borrellia (Lyme) and/or its friends? Or do you believe you have two distinct diseases, NeuroBorrelliosis (Lyme Disease) with invasion of the Central Nervous System and MS. Like Jsoldo's fiance I am curious about your answer to that question.
When you answer a question on the MS forum I believe you should state that answer clearly so that readers can understand the beliefs that you hold. Otherwise it just causes concern and confusion. Believe me, I field lots of confusion private messages everytime this comes up.
Thanks, Quix
My problem comes with the basic science of the people trying to say all MS is Lyme disease. Or those that say that Lyme disease in the brain and spine IS MS. This really isn't you, unless you are saying that now. But, there are plenty that come on this forum that maintain this. I spent some time on a lyme forum and there were thread after thread about herx'ing on and off for years and years. I consider this bunk and have real problems with the doctors fostering it. Their descriptions of their "herx's" were remarkably like MS relapses. And the herx's reaction does not include all symptoms that anyone suffers going on for weeks at a time. The good lyme stuff from ILADS that I have read state that herx'ing may occur, but only at the beginning of an effective therapy.
As for the studies that have found the spirochetes in MS plaques. The main one was many years ago and subsequent studies have not been able to reproduce the findings. There has been quite a bit of study looking at whether TBI is likely one of the underlying causes/triggers of MS and the data is certainly lacking in my opinion that the two diseases are the same or that TBI is a likely common cause. I have systematically begun reading all of the ILADS "scientific" articles. Some of them, in fact the current #1, is merely an opinion article proposing Lyme as a cause of MS and stating that someone should go study it. Yet, people quote this article as if it proves something.
The best stuff I found was quite convincing that A FEW people do have resistant Borrellia (Lyme) infections needing many, many months of antibiotics and this was confirmed by using PCR techniques to find Borrellia DNA in their CSF. The vast majority cleared with far less time treated with antibiotics (about 6 months if I remember) as proven by several factors, including the persistent disappearance of spirochete DNA from the CSF.
I also take exception to the frequent statement that treatment will continue until the person becomes assymptomatic. If the statement were to include "or no longer improves" it would make sense. Longstanding neuroborreliosis can cause scarring in the CNS. There is no likelihood that scarring will revert to normal brain tissue, by stopping what killed it. When people come here and imply that if people with MS would just embrace the Lyme theory and begin antibiotics they could be completely cured, I think they are offering snake oil. I wish that people would be straight and say what you usually do, that some people with MS may actually have Lyme or something else and encourage good testing.
But, in your various postings you never quite say what you believe your status is. Do you believe you have Multiple Sclerosis and that it is caused by Borrellia (Lyme) and/or its friends? Or do you believe you have two distinct diseases, NeuroBorrelliosis (Lyme Disease) with invasion of the Central Nervous System and MS. Like Jsoldo's fiance I am curious about your answer to that question.
When you answer a question on the MS forum I believe you should state that answer clearly so that readers can understand the beliefs that you hold. Otherwise it just causes concern and confusion. Believe me, I field lots of confusion private messages everytime this comes up.
Thanks, Quix
If I may add this to Quix 's response, and if I may say a pretty good explaination Q :)
..IGeneX is a lab that tests for many bands that the ELISA doesn't test for. But, all testing for lyme is unreliable. It's this very reason that the CDC on it's website states that testing along with symptoms needs to be a Clinical diagnosis.
As for LLMD's always saying "lyme".....of course there are good doctors and then there are better doctors. So, yes get a second, third, opinion.
I would only recommend a doctor who is a Member of ILADS. ( of course there aren't many) but well worth finding one.
Bottomline is this: the whole lyme thing is confusing, and doesn't sit very well in the mainstream medical community. I had to do my own research and make my own decisions. lymenet.org Really helped me with the info they have collected. There are tons of explainations "why" testing for lyme is lousy...doctors explain why "one" band positive "could" be enough to begin an antibiotic treatment --along with symptoms.
When I began taking antibiotics I did have a reaction to them....and it was my way of knowing I was on the correct path.
I used to think I was allergic to some abx...found out it was a reaction to the infection I have! Now all rashes are gone,,even from the Babesia, Bartonella.
Here's some of my MS symptoms-
nystagmus
tingling
numbness
optic neuritits
LHermittes
loss of coordination
lesions on brain and spinal cord
Over the years I remained RRMS and a lucky girl for that.
I do hope you find your answers,
Hi Quix, in the next month or two I'm going for new MRI's, and my doc is asking the radiologist to measure my lesions from where they were to where they are now. Would you be interested in the results?
Hope your well,
tory
..IGeneX is a lab that tests for many bands that the ELISA doesn't test for. But, all testing for lyme is unreliable. It's this very reason that the CDC on it's website states that testing along with symptoms needs to be a Clinical diagnosis.
As for LLMD's always saying "lyme".....of course there are good doctors and then there are better doctors. So, yes get a second, third, opinion.
I would only recommend a doctor who is a Member of ILADS. ( of course there aren't many) but well worth finding one.
Bottomline is this: the whole lyme thing is confusing, and doesn't sit very well in the mainstream medical community. I had to do my own research and make my own decisions. lymenet.org Really helped me with the info they have collected. There are tons of explainations "why" testing for lyme is lousy...doctors explain why "one" band positive "could" be enough to begin an antibiotic treatment --along with symptoms.
When I began taking antibiotics I did have a reaction to them....and it was my way of knowing I was on the correct path.
I used to think I was allergic to some abx...found out it was a reaction to the infection I have! Now all rashes are gone,,even from the Babesia, Bartonella.
Here's some of my MS symptoms-
nystagmus
tingling
numbness
optic neuritits
LHermittes
loss of coordination
lesions on brain and spinal cord
Over the years I remained RRMS and a lucky girl for that.
I do hope you find your answers,
Hi Quix, in the next month or two I'm going for new MRI's, and my doc is asking the radiologist to measure my lesions from where they were to where they are now. Would you be interested in the results?
Hope your well,
tory
I was incorrect, or at least incomplete, when I spoke about the usefulness of the spinal fluid in detecting Lyme Disease that has invaded the brain or spine. The diagnosis does require finding a elevated rate of production of a specific antibody against the Lyme organism, Borrellia burgdorferi(sp?). I do not know the other required criteria, but I can look later.
Quix
Quix
Actually the Lyme test you had was the ELISA and is notorious for false negatives. Darn near worthless as a diagnostic test unless it is positive. Then it is good info. You need to request a Western Blot to be run.
If they want to make the diagnosis on what they already have they may not recommend a spinal tap. More and more the diagnosis is made without one. You could request it.
Actually, from what I've learned the spinal fluid doesn't show direct signs of Lyme very well either, unless they run some research looking for the DNA from the organism. Someone with CNS invasion by Borrellia (the Lyme bug) will sometimes show an elevated IgG Index and sometimes Oligoclonal banding. Both of these things are seen in MS much more frequently.
An aside about the Lyrica - It would be to treat the symptoms, usually nerve pain, and it wouldn't matter what the cause. The med won't mask the illness and is the same med used for the pain whether we are talking about Lyme, MS or something else.
Having been in medicine for two and a half decades, I have seen some amazing coincidences. While you and your doctors weed out the possible alternatives (and with the spinal lesions, the number of possibilities has fallen tremendously) do not exclude MS just because it seems too weird. You could also argue that getting any neurological disease that close to when your fiance did would be mind-boggling.
As you explore the possibility of Lyme disease you will likely also get the recommendation of seeing a Lyme Literate doctor. If you go this route, I would advise seeking additional opinions there, also. I have yet to meet someone who has seen one of these LLMDs that was NOT "diagnosed" with Lyme or one of it's cousins. (personal opinion). I would think that chance alone would pop up some negatives. Just keep your head up when someone offers a cure.
As always I hope you and your fiance, if she wishes, stick around.
Quix
If they want to make the diagnosis on what they already have they may not recommend a spinal tap. More and more the diagnosis is made without one. You could request it.
Actually, from what I've learned the spinal fluid doesn't show direct signs of Lyme very well either, unless they run some research looking for the DNA from the organism. Someone with CNS invasion by Borrellia (the Lyme bug) will sometimes show an elevated IgG Index and sometimes Oligoclonal banding. Both of these things are seen in MS much more frequently.
An aside about the Lyrica - It would be to treat the symptoms, usually nerve pain, and it wouldn't matter what the cause. The med won't mask the illness and is the same med used for the pain whether we are talking about Lyme, MS or something else.
Having been in medicine for two and a half decades, I have seen some amazing coincidences. While you and your doctors weed out the possible alternatives (and with the spinal lesions, the number of possibilities has fallen tremendously) do not exclude MS just because it seems too weird. You could also argue that getting any neurological disease that close to when your fiance did would be mind-boggling.
As you explore the possibility of Lyme disease you will likely also get the recommendation of seeing a Lyme Literate doctor. If you go this route, I would advise seeking additional opinions there, also. I have yet to meet someone who has seen one of these LLMDs that was NOT "diagnosed" with Lyme or one of it's cousins. (personal opinion). I would think that chance alone would pop up some negatives. Just keep your head up when someone offers a cure.
As always I hope you and your fiance, if she wishes, stick around.
Quix
Everyone, thank you so much for all the support and information. This is a really great resource and I am very happy to have stumbled across it.
I had a "Lyme IgG/IgM Ab" blood test that came back negative. However, I have heard that Lyme can be found sometimes in spinal fluid, but not in the blood. Is that true? I guess that means my next step (either way) is a spinal tap :( Yes?
I just found out my HTLV and NMO tests came back negative, so I really am confused now.
Again, this whole thing just seems way too coincidental and I am searching for some alternate diagnosis.
Thanks again.
Jon
I had a "Lyme IgG/IgM Ab" blood test that came back negative. However, I have heard that Lyme can be found sometimes in spinal fluid, but not in the blood. Is that true? I guess that means my next step (either way) is a spinal tap :( Yes?
I just found out my HTLV and NMO tests came back negative, so I really am confused now.
Again, this whole thing just seems way too coincidental and I am searching for some alternate diagnosis.
Thanks again.
Jon
Hey there, Dr. Quix. I was using the most recent rates I could find. I haven't seen the newer data with the prevalences you give. Let's take Maine...why not? If it's a first-degree relative for her (which I gave as the "at most" scenario), then their combined risks from that perspective only would be 1/16000. If it's second degree, her risk is about 1/100, yes? So then it would be 1/80,000.
At any rate, statistically unusual but not impossible. Lotto odds can be far worse.
At any rate, statistically unusual but not impossible. Lotto odds can be far worse.
Well, weirder things have happened. We hear about astronomically rare things happening every day. It's just that they have to be looked at more skeptically, as you are doing. We have a woman here who is an MRI tech. Her hospital got a new MRI machine and she was running some tests to become accustomed to it. She hauls in her assymptomatic fiance and finds his MS.
Biowham gave you some odds of it happening, but her initial numbers were off so maybe she can recalculate. Anyway it would be a very rare occurrance, but not at all impossible. Your fiance's risk was indeed about 1 in 20-30, but only if it is in a first degree relative. The highest risk is identical twins, then siblings, then parents. 2nd degree relatives the risk falls very quickly. The newer data on general risk is about 1 in 800 for the lowest risk people and as high as 1 in 400 (in Maine). In Canada certain provinces have a risk of 1 in 250. And the risk is determined by where you spent your childhood, your ethnicity, age of acquiring certain infections, and others.
People have reported here that MS appeared on both sides of their family in 2nd degree relatives. We have a member who likely has it and both of her sisters have it. With a 1 in 20 even that is unusual.
Your story sounds much like MS. But, I also have to agree with Tory's recommendation, though I disagree with much of the science she bases her comments on. You both should be carefully tested for infectious causes of the problem. Lyme is the most common, but there are others. You both should have a blood test called a Western Blot, and it should be run by a reputable lab, skilled in testing for tick-borne illnesses. Many neuros who are clued in will run this test 2 or 3 times in different labs.
In my reading on "Lyme sites," though CNS (central nervous system) invasion by Lyme does cause lesions in the brain and spinal cord, this is not common. Neuro Lyme typically is invasion of the peripheral nervous system and is mostly sensory in the problems it causes. By the words of Lyme experts themselves on the ilads.org site, Lyme is far more likely to cause just sensory symptoms than it is to cause muscular and motor symptoms. This is borne out by the list of common symptoms of Lyme disease published on that site, which is far (FAR) more limited than the list many people post.
That said, and given the coincidence of your illnesses, your doctors need to be very conscientious in ruling out things that mimic MS, and especially the infectious causes.
I hope you stay and keep us informed on what is going on. We don't always throw statistics around and can be a very supportive site. We are very interested in what you are going through and many of us without a diagnosis also have MS in friends and relatives.
Welcome to the forum!
Quix, MD (Not a neurologist nor an infectious disease specialist) and here UNofficially
Biowham gave you some odds of it happening, but her initial numbers were off so maybe she can recalculate. Anyway it would be a very rare occurrance, but not at all impossible. Your fiance's risk was indeed about 1 in 20-30, but only if it is in a first degree relative. The highest risk is identical twins, then siblings, then parents. 2nd degree relatives the risk falls very quickly. The newer data on general risk is about 1 in 800 for the lowest risk people and as high as 1 in 400 (in Maine). In Canada certain provinces have a risk of 1 in 250. And the risk is determined by where you spent your childhood, your ethnicity, age of acquiring certain infections, and others.
People have reported here that MS appeared on both sides of their family in 2nd degree relatives. We have a member who likely has it and both of her sisters have it. With a 1 in 20 even that is unusual.
Your story sounds much like MS. But, I also have to agree with Tory's recommendation, though I disagree with much of the science she bases her comments on. You both should be carefully tested for infectious causes of the problem. Lyme is the most common, but there are others. You both should have a blood test called a Western Blot, and it should be run by a reputable lab, skilled in testing for tick-borne illnesses. Many neuros who are clued in will run this test 2 or 3 times in different labs.
In my reading on "Lyme sites," though CNS (central nervous system) invasion by Lyme does cause lesions in the brain and spinal cord, this is not common. Neuro Lyme typically is invasion of the peripheral nervous system and is mostly sensory in the problems it causes. By the words of Lyme experts themselves on the ilads.org site, Lyme is far more likely to cause just sensory symptoms than it is to cause muscular and motor symptoms. This is borne out by the list of common symptoms of Lyme disease published on that site, which is far (FAR) more limited than the list many people post.
That said, and given the coincidence of your illnesses, your doctors need to be very conscientious in ruling out things that mimic MS, and especially the infectious causes.
I hope you stay and keep us informed on what is going on. We don't always throw statistics around and can be a very supportive site. We are very interested in what you are going through and many of us without a diagnosis also have MS in friends and relatives.
Welcome to the forum!
Quix, MD (Not a neurologist nor an infectious disease specialist) and here UNofficially
Because I don't know how to "edit" my post....
Here's a link you might find interesting...This neurologist speaks about MS and lyme disease.
http://www.ilads.org/goldings2.html
Here's a link you might find interesting...This neurologist speaks about MS and lyme disease.
http://www.ilads.org/goldings2.html
I sure can understand how difficult this must be for you both.
What I can offer is looking seriously at the possibility of having a Tick-Borne Illness. Your symptoms come and go, waxing and waning happens with a TickBorne Disease and MS. Lesions also occur with both MS and TBD. T'here's so many similar things about the two it can be difficult to distinguish between them.
Looking at lyme disease "seriously" is what I eventually did after many years of having MS, and I'm glad I did.
As for pockets of people having MS??? I hope these folks give TBD a close look also.
Families and neighborhoods share the same "space"-- birds, dogs, cats are the reason for the "outbreak" of Lyme disease all across the country.
I wish the best for you,and I hope you and your fiance have a healthy happy life together.
Here's a place to start to learn about TBD.
ilads.org
lymenet.org
What I can offer is looking seriously at the possibility of having a Tick-Borne Illness. Your symptoms come and go, waxing and waning happens with a TickBorne Disease and MS. Lesions also occur with both MS and TBD. T'here's so many similar things about the two it can be difficult to distinguish between them.
Looking at lyme disease "seriously" is what I eventually did after many years of having MS, and I'm glad I did.
As for pockets of people having MS??? I hope these folks give TBD a close look also.
Families and neighborhoods share the same "space"-- birds, dogs, cats are the reason for the "outbreak" of Lyme disease all across the country.
I wish the best for you,and I hope you and your fiance have a healthy happy life together.
Here's a place to start to learn about TBD.
ilads.org
lymenet.org
Your C-spine results are very telling, and there aren't a lot of optional diagnoses besides MS. Quix could probably elaborate on that.
I suspect an MS "cluster" in my hometown; I know eight people personally who have MS, all who grew up there, and it's not a large town, and these are people I know well. Must be the water.
What are the odds? If hers are 1/20 (at most, and if it's a first-degree relative), and yours are 1/1000 (in the areas of highest prevalence), the odds that you'd both turn up with it (outside of the odds that you'd be together in the first place) are 1/20000. I can't calculate the odds that you two would meet in the first place--too many factors--but outside of that, there's a 0.005% chance you'd both develop it; with all the other probabilities factored in about meeting a specific person, it would be much much lower. To be more concise, it'd be a very rare occurrence. Have you asked the docs about this? It's almost something that would make me seek a different etiology (toxin, pathogen).
E
I suspect an MS "cluster" in my hometown; I know eight people personally who have MS, all who grew up there, and it's not a large town, and these are people I know well. Must be the water.
What are the odds? If hers are 1/20 (at most, and if it's a first-degree relative), and yours are 1/1000 (in the areas of highest prevalence), the odds that you'd both turn up with it (outside of the odds that you'd be together in the first place) are 1/20000. I can't calculate the odds that you two would meet in the first place--too many factors--but outside of that, there's a 0.005% chance you'd both develop it; with all the other probabilities factored in about meeting a specific person, it would be much much lower. To be more concise, it'd be a very rare occurrence. Have you asked the docs about this? It's almost something that would make me seek a different etiology (toxin, pathogen).
E
Hi, and welcome to the forum! I am glad you have found us. We are happy to have you here.
Firstly, what a shock to learn that your tests results were misinterpreted or brushesd aside for so very long! Wow. It's awful to think you have lost so much time. But, here you are, and wondering if the diagnosis makes sense. In a word - Yes.
I'm sorry, but you have both symptoms and documented test results of MS, sorry as I am to say that. I just can't think odf any other reason with your symptoms for you to have lesions in your brain and spine. As you say, the lesions explain the symptoms you are having.
What I am going to do is refer you to a post on this page that says "History of the Diagnosis of MS" written by Quix, our resident expert. It should shed a lot of light on the matter of your diagnosis. If you have any questions, feel free to ask again on THIS thread, the one you posted here. I'll pop back and check up on you, as I'm sure others will do.
As for your medications, has the doc talked about any Disease Modifying Drugs? Like Avonex or Copaxone? Maybe not yet. You may want to start reading up on these. The Lyrica I do not know much about, but others on the forum take it, with different levels of relief. And weight gain! I would think long and hard on that, because I struggle with my weight. Have to weigh the risks and benefits of any drug.
And, how very odd and sad that your fiance has been diagnosed with MS as well. OMGoodness! Great minds think alike, or something along those lines, right? I don't know what to say. What ARE the odds!? I should tell you, though, that even though there is the family history of MS for her, it raises her chances of actually having MS by very little. 5% or something more than the rest of the population. Not much. So there you have it. Unless someone comes along and corrects me, which I invite them to do (and they seem to enjoy very much, by the way!).
I do wish you the very best, and hope you will read the post I suggested and stick around. We are a very nice bunch of folks here who can probably help you muddle through this difficult time. This forum has done SO much for me, I can;'t tell you.
Feel well and hang tight!
Momzilla*
Firstly, what a shock to learn that your tests results were misinterpreted or brushesd aside for so very long! Wow. It's awful to think you have lost so much time. But, here you are, and wondering if the diagnosis makes sense. In a word - Yes.
I'm sorry, but you have both symptoms and documented test results of MS, sorry as I am to say that. I just can't think odf any other reason with your symptoms for you to have lesions in your brain and spine. As you say, the lesions explain the symptoms you are having.
What I am going to do is refer you to a post on this page that says "History of the Diagnosis of MS" written by Quix, our resident expert. It should shed a lot of light on the matter of your diagnosis. If you have any questions, feel free to ask again on THIS thread, the one you posted here. I'll pop back and check up on you, as I'm sure others will do.
As for your medications, has the doc talked about any Disease Modifying Drugs? Like Avonex or Copaxone? Maybe not yet. You may want to start reading up on these. The Lyrica I do not know much about, but others on the forum take it, with different levels of relief. And weight gain! I would think long and hard on that, because I struggle with my weight. Have to weigh the risks and benefits of any drug.
And, how very odd and sad that your fiance has been diagnosed with MS as well. OMGoodness! Great minds think alike, or something along those lines, right? I don't know what to say. What ARE the odds!? I should tell you, though, that even though there is the family history of MS for her, it raises her chances of actually having MS by very little. 5% or something more than the rest of the population. Not much. So there you have it. Unless someone comes along and corrects me, which I invite them to do (and they seem to enjoy very much, by the way!).
I do wish you the very best, and hope you will read the post I suggested and stick around. We are a very nice bunch of folks here who can probably help you muddle through this difficult time. This forum has done SO much for me, I can;'t tell you.
Feel well and hang tight!
Momzilla*
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