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A question for the experts from a nervous person
First, I want to tell you all (currently strangers) how helpful your posts have been. I've been reviewing them since I first started experiencing symptoms and I cannot tell you how much the information you provided helped. That you all take your time to answer questions and share your knowledge is amazing. You'll never know how much it helps people like me, who are in limbo and scared.
I said I wouldn't join this forum, but I broke down. And I'm looking for any experts that may be able to give an opinion. I saw a general neurologist who ordered tests (more about that) and an older, well credentialed MS neurologist who is on the brink of retiring. Both told me that I may have MS, but they aren't sure. In the MS doctor's words: "I don't think its MS, but it very well could be the beginning of it." As father of two very young children, I'm scared, and that doesn't help!
So, I'm asking for your help. I'm not necessarily looking for you to diagnose me (although that would be nice if had some ideas on what might be going on), but I am hopeful that I can get some understanding of what my test results mean, what I should be pushing for in terms of other tests, etc. I'm asking a lot, I know, but if there is someone with information that would help and could share, it would mean the world to me and my family.
My story: it starts with twitching eye on my right side. Not the typical twitch, but instead, wobbly vision as a result. 2 weeks later, numbness in my left side of face, left middle arm and lower left leg started abruptly in Nov. 2014, after I worked out. A week or two goes by and not much changes. My PCP runs a lot of tests (to rule out stroke, etc.). CT Scan, heart, etc. He also does a MRI of my head (1.5). It comes back normal. Then I see neuro. He recognizes that the MRI was a 1.5 and not a 3T, and reorders the MRI on a 3T.
The 3T shows T2 hyperintensities (none bigger than 3 mm, about 11 in number) in the deep subcortical & periventricular white matter of both the cerebral hemispheres. No enhancement.
Following the MRI (about 2 weeks after the mild numbness), I feel like a train hits me. It started with a mild neckach, then headaches that start on one side and then to whole head, twitching vision on both sides, the most stiff neck I've ever had. Deep fatigue. Emotional, anxious. Extreme weakness in the areas that were previously numb (on left side). If I do anything, it feels like I've lifted weights to exhaustion. Trouble swallowing, choked on food. My lymph nodes on the left side of my neck started swelling (and have been to this day). Twitching muscles on both sides of my body. Hard time saying my words; confusion at work. I also get a red rash around both eyes, that comes for 3-4 days, then goes. After 2 weeks, those very bad symptoms go away.
During the "bad period", I had a LP. It came back normal on all tests (bands, protiens, etc.). I was also tested for inflammatory diseases (lupus, etc.), and those came back normal. I was also tested (at the LP and otherwise) for lyme (because I had a deer tick in my skin in April 2014), but those came back normal (I pushed that far - i had the normal blood test, western blot and even a PCR of my LP). I also had evoked potentials, and those came back normal too. I had an abnormal Babinski (left foot), but no other neurological deficits.
Now, I'm left with buzzing in my left foot, tiredness in my left arm if I over exert, numbness in my face on an off (left side only), twitching in both eyes, lymph nodes still swollen, and a feeling of incoordination in my left foot and leg. I also think I have mild cognitive issues (can't find words). My left arm gets a bit more tired when I take a hot shower, but not dramatically. The eye rash comes back when the symptoms show up, but then goes away. I have periodic burning feelings in my left arm, periodic feeling of being wet. Recently, started buzzing in right foot, too.
I'm sorry - that was a novel. The doctors are going to do another MRI in 6 months, and otherwise, wait it out. I'm anxious. If its MS, I want to be on the drugs to stop progression. I also want to know if it is a mimic, and what other testing I should do. Except for this, I am a very health person that (previously) worked out a lot and ate well. My only health issue is celiac disease, which I manage with a gluten free diet.
Any help or insight you can add about my situation is greatly appreciated. Very selfish of me to ask you to spend your time helping me, but I can't tell you how much I appreciate it. I feel like in reading your posts, you all are more insightful (and caring) then the doctors who are taking care of me (who, by the way, are all very nice people). I have to say, my faith in the goodness of people was renewed when I saw this forum. My hope is to pay it back when I learn of my diagnosis and have something to share.
Thanks for your help and I wish you all the best as you navigate your own situations.
I said I wouldn't join this forum, but I broke down. And I'm looking for any experts that may be able to give an opinion. I saw a general neurologist who ordered tests (more about that) and an older, well credentialed MS neurologist who is on the brink of retiring. Both told me that I may have MS, but they aren't sure. In the MS doctor's words: "I don't think its MS, but it very well could be the beginning of it." As father of two very young children, I'm scared, and that doesn't help!
So, I'm asking for your help. I'm not necessarily looking for you to diagnose me (although that would be nice if had some ideas on what might be going on), but I am hopeful that I can get some understanding of what my test results mean, what I should be pushing for in terms of other tests, etc. I'm asking a lot, I know, but if there is someone with information that would help and could share, it would mean the world to me and my family.
My story: it starts with twitching eye on my right side. Not the typical twitch, but instead, wobbly vision as a result. 2 weeks later, numbness in my left side of face, left middle arm and lower left leg started abruptly in Nov. 2014, after I worked out. A week or two goes by and not much changes. My PCP runs a lot of tests (to rule out stroke, etc.). CT Scan, heart, etc. He also does a MRI of my head (1.5). It comes back normal. Then I see neuro. He recognizes that the MRI was a 1.5 and not a 3T, and reorders the MRI on a 3T.
The 3T shows T2 hyperintensities (none bigger than 3 mm, about 11 in number) in the deep subcortical & periventricular white matter of both the cerebral hemispheres. No enhancement.
Following the MRI (about 2 weeks after the mild numbness), I feel like a train hits me. It started with a mild neckach, then headaches that start on one side and then to whole head, twitching vision on both sides, the most stiff neck I've ever had. Deep fatigue. Emotional, anxious. Extreme weakness in the areas that were previously numb (on left side). If I do anything, it feels like I've lifted weights to exhaustion. Trouble swallowing, choked on food. My lymph nodes on the left side of my neck started swelling (and have been to this day). Twitching muscles on both sides of my body. Hard time saying my words; confusion at work. I also get a red rash around both eyes, that comes for 3-4 days, then goes. After 2 weeks, those very bad symptoms go away.
During the "bad period", I had a LP. It came back normal on all tests (bands, protiens, etc.). I was also tested for inflammatory diseases (lupus, etc.), and those came back normal. I was also tested (at the LP and otherwise) for lyme (because I had a deer tick in my skin in April 2014), but those came back normal (I pushed that far - i had the normal blood test, western blot and even a PCR of my LP). I also had evoked potentials, and those came back normal too. I had an abnormal Babinski (left foot), but no other neurological deficits.
Now, I'm left with buzzing in my left foot, tiredness in my left arm if I over exert, numbness in my face on an off (left side only), twitching in both eyes, lymph nodes still swollen, and a feeling of incoordination in my left foot and leg. I also think I have mild cognitive issues (can't find words). My left arm gets a bit more tired when I take a hot shower, but not dramatically. The eye rash comes back when the symptoms show up, but then goes away. I have periodic burning feelings in my left arm, periodic feeling of being wet. Recently, started buzzing in right foot, too.
I'm sorry - that was a novel. The doctors are going to do another MRI in 6 months, and otherwise, wait it out. I'm anxious. If its MS, I want to be on the drugs to stop progression. I also want to know if it is a mimic, and what other testing I should do. Except for this, I am a very health person that (previously) worked out a lot and ate well. My only health issue is celiac disease, which I manage with a gluten free diet.
Any help or insight you can add about my situation is greatly appreciated. Very selfish of me to ask you to spend your time helping me, but I can't tell you how much I appreciate it. I feel like in reading your posts, you all are more insightful (and caring) then the doctors who are taking care of me (who, by the way, are all very nice people). I have to say, my faith in the goodness of people was renewed when I saw this forum. My hope is to pay it back when I learn of my diagnosis and have something to share.
Thanks for your help and I wish you all the best as you navigate your own situations.
Hi Kyle, thanks for taking the time to write. Your niece is at a great school! I'm really glad that even though you are dealing with MS, it is not affecting you too much. I hope it stays that way forever for you.
To answer your question: my symptoms first started in Nov. 2014, with the eye twitching I mentioned. The tick bite happened 7 months prior, in April 2014. Before the Nov. eye twitching, I had some stiffness in my left hamstring and randomly my left toe felt like it was on fire for 2 weeks or so, then it went away. But only in November did I experience the more significant symptoms, mostly on my left side.
I appreciate your insight and encouragement. I'll post in the Lyme group to see if there is any insight, but I have to admit, after coming back negative on multiple Lyme tests, I don't have a lot of hope that is what this is. I'd like to be proven wrong, however, so I can jump on antibiotics (if that would help).
Thanks for all of your insights, and if anyone else has something to add, I appreciate it.
To answer your question: my symptoms first started in Nov. 2014, with the eye twitching I mentioned. The tick bite happened 7 months prior, in April 2014. Before the Nov. eye twitching, I had some stiffness in my left hamstring and randomly my left toe felt like it was on fire for 2 weeks or so, then it went away. But only in November did I experience the more significant symptoms, mostly on my left side.
I appreciate your insight and encouragement. I'll post in the Lyme group to see if there is any insight, but I have to admit, after coming back negative on multiple Lyme tests, I don't have a lot of hope that is what this is. I'd like to be proven wrong, however, so I can jump on antibiotics (if that would help).
Thanks for all of your insights, and if anyone else has something to add, I appreciate it.
Hi Bceagle00 - My niece is a freshman @BC :-)
If you were in the middle of an MS relapse, or no more than 40 days from the end of one, some of those lesions are likely to have enhanced. Enhancement is how they can tell if there is current inflammation. It's most often inflammation that causes symptoms. If you were symptomatic when the MRIs were done, and no lesions enhanced, it would point away from MS as the cause.
One thing I must have missed in your orignal post was when you had your first symptoms. Most of what you are experiencing appears on the Lyme Disease Symptom Top 40. When you mention tick bite, waxing/waning migrating symptoms and rash my mind goes to Lyme, not MS.
Should it turn out to be MS, there's no reason to freak :-) MS is a very slow moving disease. I was 20 years between my forst symptoms and my first treatment. This was largely due to me not think much about it in the interim :-) I'm A-OK. If you saw me on the street you would never know that I have SPMS!
Kyle
If you were in the middle of an MS relapse, or no more than 40 days from the end of one, some of those lesions are likely to have enhanced. Enhancement is how they can tell if there is current inflammation. It's most often inflammation that causes symptoms. If you were symptomatic when the MRIs were done, and no lesions enhanced, it would point away from MS as the cause.
One thing I must have missed in your orignal post was when you had your first symptoms. Most of what you are experiencing appears on the Lyme Disease Symptom Top 40. When you mention tick bite, waxing/waning migrating symptoms and rash my mind goes to Lyme, not MS.
Should it turn out to be MS, there's no reason to freak :-) MS is a very slow moving disease. I was 20 years between my forst symptoms and my first treatment. This was largely due to me not think much about it in the interim :-) I'm A-OK. If you saw me on the street you would never know that I have SPMS!
Kyle
I should have mentioned: my docs say the the lesions are not good and indicate something g is wrong, but do not look like your typical MS lesions. I'm not sure why. But I do know the docs thought it was significant that there was no enhancement. Thanks again everyone'.
Thanks JJ AND Barb for your thoughts. Both very helpful. I Was very hung up on the Lyme issue when this first stated, because, as you note, it is just too much of a coincidence. But the tick was only in 12-24 hours, I had a prophylactic dose of antibiotics and have now been tested twice for Lyme and all negative. Posting in Lyme is a good idea.
JJ - your thoughts on unilateral vs bilateral are interesting. The eye on the right and mild buzzing in right foot are the only right sided issues. But is it meaningful the the right eye was there from the beginning and the right foot issues started nearly 3 months after the initial issues?
Also, I'm not sure what to make of your thoughts on the MRI. Indicative of MS? My docs say no but don't explain why. Seems like you may have some insight.
The is again for your thoughts. You all are so nice, intelligent and helpful. I'm lucky to have connected with you.
JJ - your thoughts on unilateral vs bilateral are interesting. The eye on the right and mild buzzing in right foot are the only right sided issues. But is it meaningful the the right eye was there from the beginning and the right foot issues started nearly 3 months after the initial issues?
Also, I'm not sure what to make of your thoughts on the MRI. Indicative of MS? My docs say no but don't explain why. Seems like you may have some insight.
The is again for your thoughts. You all are so nice, intelligent and helpful. I'm lucky to have connected with you.
COMMUNITY LEADER
Hi and welcome to our little community,
Julie has mentioned what i also noted, but the rash and lymph nodes are not untypical they are totally unrelated to MS, and from my understanding they each would be significant 'red flags' on MS 'not' being the most likely explanation....
You also have a few other red flags, the presenting 'unilateral' symptoms continued to escalate over a very short time frame into bilateral, and different symptoms have continued to develop since. Plus the deer tick only happening a few months prior, and you have a pre-existing diagnoses of Celiac disease. Plus there isn't any or more suggestive diagnostic evidence that the periventricular and subcortical lesions are demyelinating lesions and not caused by the Celiac.
Which genuinely would 'not' put MS at the top of your list of possible causes but may provide some alternative areas for further consideration. To be honest, i'm actually thinking you are more suggestive of Lyme than MS, it's just too big a coincidence for me with the tick and apart from the lesions which could be from Celiac, all those red flags mentioned would be more common to Lyme disease.
I think it would be a good idea to get retested for Lyme disease and it might be a good idea to post this question in our Lyme community and get there input too...
Cheers............JJ
Julie has mentioned what i also noted, but the rash and lymph nodes are not untypical they are totally unrelated to MS, and from my understanding they each would be significant 'red flags' on MS 'not' being the most likely explanation....
You also have a few other red flags, the presenting 'unilateral' symptoms continued to escalate over a very short time frame into bilateral, and different symptoms have continued to develop since. Plus the deer tick only happening a few months prior, and you have a pre-existing diagnoses of Celiac disease. Plus there isn't any or more suggestive diagnostic evidence that the periventricular and subcortical lesions are demyelinating lesions and not caused by the Celiac.
Which genuinely would 'not' put MS at the top of your list of possible causes but may provide some alternative areas for further consideration. To be honest, i'm actually thinking you are more suggestive of Lyme than MS, it's just too big a coincidence for me with the tick and apart from the lesions which could be from Celiac, all those red flags mentioned would be more common to Lyme disease.
I think it would be a good idea to get retested for Lyme disease and it might be a good idea to post this question in our Lyme community and get there input too...
Cheers............JJ
Let me start by saying I'm sorry that you are going through so much. And I also am no expert, but I have a sister with lyme disease and she went through standard protocol treatment and was then supposedly cured.
This was only the beginning for her. Lyme disease also can be accompanied by a variety of co-infections that can also cause many symptoms.
I'm not saying that it couldn't be ms, and I'm glad that the doc is repeating your MRI in a few months.
From my own experience with ms, most of my symptoms are on my right side. I think a lot of us here experience one sided symptoms. But I have heard of people with different symptoms on both sides.
There are many here that know so much so you have come to a good place to ask questions. Just know that we all have been where you are or are still where you are.
I'm sure you can get some good advice here.
Good luck and know your not alone. We are all willing to help if we can.
Best regards, barb
This was only the beginning for her. Lyme disease also can be accompanied by a variety of co-infections that can also cause many symptoms.
I'm not saying that it couldn't be ms, and I'm glad that the doc is repeating your MRI in a few months.
From my own experience with ms, most of my symptoms are on my right side. I think a lot of us here experience one sided symptoms. But I have heard of people with different symptoms on both sides.
There are many here that know so much so you have come to a good place to ask questions. Just know that we all have been where you are or are still where you are.
I'm sure you can get some good advice here.
Good luck and know your not alone. We are all willing to help if we can.
Best regards, barb
Julie, thanks for your thoughts. It means a lot to me that you would take the time to write. I agree - the lymph nodes and rash do not come up as typical MS symptoms, but others I am experiencing do. I forgot to mention - before all this hot and currently, my left hamstring is always stiff. Spasticity, I think?
And yes - I was pleased when my Nuero caught the MRI issue! Thanks again for your thoughts.
And yes - I was pleased when my Nuero caught the MRI issue! Thanks again for your thoughts.
Well heck, you are having a time of it aren't you? I am so sorry. It sounds like you have a lot going on physically.
Let me first say I am NOT an expert, not even close but let me at least get this conversation started.
I love that the neuro redid the MRI on a T3! That is a good sign that you have someone who knows how important the machine is. I don't know how to read MRI's so I will leave the results you shared for someone else to comment on.
What stands out in your description of symptoms is the stuff that is unfamiliar to me as it relates to MS...rash, swollen lymph nodes. I do know that over the years there have been more than a few people with mimic symptoms that eventually were proven to be related to lyme even after the initial tests were negative.
Also, your celiac disease is intriguing b/c many of the symptoms can also be a close mimic to MS.
All this to say that I really cannot help you very much other than to say that if all your symptoms are related to the same cause, it doesn't sound like MS to me. It sounds like more of an infection.
Again, I am not an expert so take my opinion for what it is worth, not much. I am interested in what some of the more qualified people on this forum have to say.
Good luck and I'll be following your posts.
Julie
Let me first say I am NOT an expert, not even close but let me at least get this conversation started.
I love that the neuro redid the MRI on a T3! That is a good sign that you have someone who knows how important the machine is. I don't know how to read MRI's so I will leave the results you shared for someone else to comment on.
What stands out in your description of symptoms is the stuff that is unfamiliar to me as it relates to MS...rash, swollen lymph nodes. I do know that over the years there have been more than a few people with mimic symptoms that eventually were proven to be related to lyme even after the initial tests were negative.
Also, your celiac disease is intriguing b/c many of the symptoms can also be a close mimic to MS.
All this to say that I really cannot help you very much other than to say that if all your symptoms are related to the same cause, it doesn't sound like MS to me. It sounds like more of an infection.
Again, I am not an expert so take my opinion for what it is worth, not much. I am interested in what some of the more qualified people on this forum have to say.
Good luck and I'll be following your posts.
Julie
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