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Springtime for Suffering
I won't go into all the details, but the background to this question is: over the past two spring-late summers, I've developed symptoms that are all typical of MS, but lab tests don't show any evidence. I've had every possible test (the last a year ago) except lumbar puncture. There's a "blurry" margin to my right optic nerve and I have abnormally brisk knee-jerk reflexes (4+/5+ with clonus). Nothing else amiss.
For the past few days, walking has become increasingly challenging. I can walk, but I think I am walking with a limp. My feet (both) burn and tingle shortly after I start walking, and the burning lasts for hours afterwards and sometimes when I'm just resting, as well. I just walked a mile home from work and my feet are tingling like crazy, and so is the back of my left thigh. The walking difficulty is mainly due to extreme stiffness in my left leg; it feels almost as if there is a vice over the knee and it hurts, but even more than it hurts, it's difficult to sustain a normal walking movement. It takes all my concentration just to keep moving forward. This happened last year, as well, but it is worse this year. Last year, at the same time as this symptom, the left side of my face tingled as well, and I was having vertigo and blurry vision on and off, and my left ear was completely deaf. My hearing in that ear has come and gone since, but it's fine now, as is my vision. I'm not dizzy right now, nor am I having the short-term memory problems that sometimes plague me.
I'll be 34 in a few weeks. Last year after all the tests, the NP who managed my case at the neuro office told me that other than what I mentioned above and some unusual arthritis in my C-spine, I don't show any signs of any CNS disorder, including MS--which is good. She said an LP would be pointless because even if they found o-bands in the fluid, without lesions on MRIs, there's not really anything they can do. She said to call them back only if one or more of the three following things happens:
1. I can't walk for at least one consecutive week;
2. I get double vision for at least one consecutive week (not a few days on and off); or
3. I lose control of my bladder.
I leak a little down my pants leg (sorry if that's TMI) about 30% after I urinate, but I am not incontinent. As of right now, I'm still able to walk even though it hurts and it's awkward. And I don't have double vision. I'm going to a conference this weekend for five days, and it will involve a lot of walking, and I'm really nervous about that but because of the nurse's conditions, I don't think it's time for me to call a doctor. So I guess my only question is, does this walking problem sound like an MS type of thing, or should I maybe go to a different type of specialist? One month ago, I went for a long walk and even jogged a little bit (3-4 minutes on and off a couple of times), which I have not done since I had to in high school, but I'm not obese (5'11", 165lb) or out of shape, and none of these problems started until about a week and a half ago, so I have a hard time believing that the walking problem is related to the walk/jog I did--although I won't be doing it again.
Mysterious pains and coordination problems are SUCH a pain in the a$$!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Going to cry into a glass of wine now.
For the past few days, walking has become increasingly challenging. I can walk, but I think I am walking with a limp. My feet (both) burn and tingle shortly after I start walking, and the burning lasts for hours afterwards and sometimes when I'm just resting, as well. I just walked a mile home from work and my feet are tingling like crazy, and so is the back of my left thigh. The walking difficulty is mainly due to extreme stiffness in my left leg; it feels almost as if there is a vice over the knee and it hurts, but even more than it hurts, it's difficult to sustain a normal walking movement. It takes all my concentration just to keep moving forward. This happened last year, as well, but it is worse this year. Last year, at the same time as this symptom, the left side of my face tingled as well, and I was having vertigo and blurry vision on and off, and my left ear was completely deaf. My hearing in that ear has come and gone since, but it's fine now, as is my vision. I'm not dizzy right now, nor am I having the short-term memory problems that sometimes plague me.
I'll be 34 in a few weeks. Last year after all the tests, the NP who managed my case at the neuro office told me that other than what I mentioned above and some unusual arthritis in my C-spine, I don't show any signs of any CNS disorder, including MS--which is good. She said an LP would be pointless because even if they found o-bands in the fluid, without lesions on MRIs, there's not really anything they can do. She said to call them back only if one or more of the three following things happens:
1. I can't walk for at least one consecutive week;
2. I get double vision for at least one consecutive week (not a few days on and off); or
3. I lose control of my bladder.
I leak a little down my pants leg (sorry if that's TMI) about 30% after I urinate, but I am not incontinent. As of right now, I'm still able to walk even though it hurts and it's awkward. And I don't have double vision. I'm going to a conference this weekend for five days, and it will involve a lot of walking, and I'm really nervous about that but because of the nurse's conditions, I don't think it's time for me to call a doctor. So I guess my only question is, does this walking problem sound like an MS type of thing, or should I maybe go to a different type of specialist? One month ago, I went for a long walk and even jogged a little bit (3-4 minutes on and off a couple of times), which I have not done since I had to in high school, but I'm not obese (5'11", 165lb) or out of shape, and none of these problems started until about a week and a half ago, so I have a hard time believing that the walking problem is related to the walk/jog I did--although I won't be doing it again.
Mysterious pains and coordination problems are SUCH a pain in the a$$!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Going to cry into a glass of wine now.
I just reread all of your symtoms, meds and doc visits. It seems like you have had EVERY test imangiable to check for MS. I'm with JJ and Mary on their responses. Perhaps your meds are causing some of your symtoms and/or you have health anxiety as already noted by by your neurologist and pyschiatrist.
You mentioned you had a B-12 (or rather "B-vitamins as you stated) . This is an excellent mimic for MS but since you have already had it done there is NO need to have it repeated. My point in this is there are lots of things that are quite simple and most of the population doesn't even recognize nor acknowledge the event.
For instance, the dry eyes. Lack of eye fluid is NOT an MS symptom yet many people who do computer work have this problem. Solution: over the counter eye drops for replenishing the fluid.
The tingle in your feet ,etc. can be caused by anxiety. You think of an anxious situation and you unconsicously begin to hyperventilate. Hyper ventilation can cause the tingling that seems to incapacitate you.
You already have stated you have anxiety as diagnosed by your psychiatrist. My opinion is you need to go back and discuss what is causing your anxiety and therefore your symtoms. The list you wrote doesn't sound like classic MS and with a negative MRI I would have to agree with Mary, JJ and the doctors who told you to be happy. It will be hard work to figure out your issues but well worth it in the long run.
As for mental health issues, mental health is as important as physical health issues. If you don't have a good mental health situation then you won't have a good physical situation. You have had enough tests to rule out everything under the sun. So do your best to relax and please do enjoy your good health !
You mentioned you had a B-12 (or rather "B-vitamins as you stated) . This is an excellent mimic for MS but since you have already had it done there is NO need to have it repeated. My point in this is there are lots of things that are quite simple and most of the population doesn't even recognize nor acknowledge the event.
For instance, the dry eyes. Lack of eye fluid is NOT an MS symptom yet many people who do computer work have this problem. Solution: over the counter eye drops for replenishing the fluid.
The tingle in your feet ,etc. can be caused by anxiety. You think of an anxious situation and you unconsicously begin to hyperventilate. Hyper ventilation can cause the tingling that seems to incapacitate you.
You already have stated you have anxiety as diagnosed by your psychiatrist. My opinion is you need to go back and discuss what is causing your anxiety and therefore your symtoms. The list you wrote doesn't sound like classic MS and with a negative MRI I would have to agree with Mary, JJ and the doctors who told you to be happy. It will be hard work to figure out your issues but well worth it in the long run.
As for mental health issues, mental health is as important as physical health issues. If you don't have a good mental health situation then you won't have a good physical situation. You have had enough tests to rule out everything under the sun. So do your best to relax and please do enjoy your good health !
COMMUNITY LEADER
To me what you need to do is logical, and i sort of dont understand why you haven't mentioned it. Your psych has dx you with "anxiety/depression and possible convension disorder", and you are rxed combined (4) mental health medications, some of which are anti-psychotics and target CNS delivery BUT
"while the physical symptoms shift and migrate and evolve and come and go, the intensity and disruption to my life is the same as before I was medicated and was very active"
Doesn't that tell you something? To me the only logical solution is that you need to GO BACK to your psychiatrist and discuss everything again with him/her and consider altering your treatment plan to better suit you!
You and I have a very different veiw on many things "being told it's all in my head certainly isn't going to help relieve any of that anxiety" being 'told' anything is never going to relieve your anxiety Artist. I get where your coming from but seriously lets try to keep things in perspective, would you really feel any differently if you were told you have a chronic disease like MS? Would you now be relieved of all your anxiety about your health or would you be even more freaked out?
Obviously I dont think your anxiety would improve at all but maybe your missing the point. Your mental health situation IS the 'more likely' explanation for your sx, you know that and your dr's know that but instead of fighting with every once of self preservation you have, to do anything and everything that you can, to change your world for better tomorrows, you just can't.
You can't because your stuck in the revolving door of 'this must be real' and thats 'more likely' due to your mental health situation than anything else. Your sx are 'real' but the cause is not the same as what it is for MS or anything else physilogical, so the treatment plan logically has to be different if the sx are caused by psychological issues instead but does it really matter what the cause is, isn't the entire point of dx, to get as well as you are able, and on the appropriate treatment plan?
What are your triggers Artistlike? You have them but maybe you haven't recognised them for what they are, up coming conference could be one, think about it, you have triggers, a pattern that takes you towards the spiral, everybody has them so what are yours? Seriously if your sx are mental health generated as your dr's believe them to be, knowing your triggers can give you back some control.
If you understand health anxiety and conversion disorder at all, you will understand that allowing these MS thoughts to fester and build, is like throwing fuel on a flame and if you dont know this already, then its probably time that you learnt everything there is to know about these conditions so you know what your dealing with.
Call your psych before it goes to far, be the driver in this!
Hugs..........JJ
PS I really hope you dont respond to my questions but take the time to stop, breath and really think about what ive said, answering those questions for your self is whats important.
"while the physical symptoms shift and migrate and evolve and come and go, the intensity and disruption to my life is the same as before I was medicated and was very active"
Doesn't that tell you something? To me the only logical solution is that you need to GO BACK to your psychiatrist and discuss everything again with him/her and consider altering your treatment plan to better suit you!
You and I have a very different veiw on many things "being told it's all in my head certainly isn't going to help relieve any of that anxiety" being 'told' anything is never going to relieve your anxiety Artist. I get where your coming from but seriously lets try to keep things in perspective, would you really feel any differently if you were told you have a chronic disease like MS? Would you now be relieved of all your anxiety about your health or would you be even more freaked out?
Obviously I dont think your anxiety would improve at all but maybe your missing the point. Your mental health situation IS the 'more likely' explanation for your sx, you know that and your dr's know that but instead of fighting with every once of self preservation you have, to do anything and everything that you can, to change your world for better tomorrows, you just can't.
You can't because your stuck in the revolving door of 'this must be real' and thats 'more likely' due to your mental health situation than anything else. Your sx are 'real' but the cause is not the same as what it is for MS or anything else physilogical, so the treatment plan logically has to be different if the sx are caused by psychological issues instead but does it really matter what the cause is, isn't the entire point of dx, to get as well as you are able, and on the appropriate treatment plan?
What are your triggers Artistlike? You have them but maybe you haven't recognised them for what they are, up coming conference could be one, think about it, you have triggers, a pattern that takes you towards the spiral, everybody has them so what are yours? Seriously if your sx are mental health generated as your dr's believe them to be, knowing your triggers can give you back some control.
If you understand health anxiety and conversion disorder at all, you will understand that allowing these MS thoughts to fester and build, is like throwing fuel on a flame and if you dont know this already, then its probably time that you learnt everything there is to know about these conditions so you know what your dealing with.
Call your psych before it goes to far, be the driver in this!
Hugs..........JJ
PS I really hope you dont respond to my questions but take the time to stop, breath and really think about what ive said, answering those questions for your self is whats important.
Sorry to hear your problems continue Artist. I'm not quite clear if your symptoms are completely gone in the time between each spring-summer cycle. I sure hope so. It would be nice if you're able to enjoy life at least part of the year.
The thing that strikes me most here is that powerful combo of drugs you take. It’s not like you are the first to share a complex list of medications with us. I am just wondering how you manage to walk around and live life on that particular combo. Those are all powerful pharmaceuticals and (like you) I'm not sure I see where they are successfully treating whatever it is that ails you.
I guess as long as one doctor is aware of your total dosing day he must think it is OK for you. Everybody needs and tolerates different medication regimes. Is it the excellent neuro #2 who follows you while you take these? I would think he has you coming in for a follow through appointments. Maybe it is time to question the wisdom of staying with this 'treatment'.
I don't know what has gone wrong in your body but if I was taking all those drugs without noticeable improvement, I think I would be talking to the doc about slowly decreasing and/or discontinuing them. I'd want to see where my baseline health is compared to when symptoms first started. That's just me and how I would approach it.
I guess the best thing any of us can do is go with a doc we trust and then follow the advice we get. I sure hope things get better quicker this season.
Mary
The thing that strikes me most here is that powerful combo of drugs you take. It’s not like you are the first to share a complex list of medications with us. I am just wondering how you manage to walk around and live life on that particular combo. Those are all powerful pharmaceuticals and (like you) I'm not sure I see where they are successfully treating whatever it is that ails you.
I guess as long as one doctor is aware of your total dosing day he must think it is OK for you. Everybody needs and tolerates different medication regimes. Is it the excellent neuro #2 who follows you while you take these? I would think he has you coming in for a follow through appointments. Maybe it is time to question the wisdom of staying with this 'treatment'.
I don't know what has gone wrong in your body but if I was taking all those drugs without noticeable improvement, I think I would be talking to the doc about slowly decreasing and/or discontinuing them. I'd want to see where my baseline health is compared to when symptoms first started. That's just me and how I would approach it.
I guess the best thing any of us can do is go with a doc we trust and then follow the advice we get. I sure hope things get better quicker this season.
Mary
Thanks...it's just that I've had full exams from two different neurologists and MRIs from two different imaging centers.
Year 1:
-Blood tests (HIV, CBC, blood sugar, B-vitamins)
-Brain and C-spine MRI
-EMG/NCV
Year 2:
-Blood tests (HIV, Lyme, CBC, blood sugar, vitamins, testosterone and free testosterone, thyroid panel, and ANA test for lupus, etc.)
-Brain and C-, T-, and L-spine MRI
-EMG/NCV
-EEG
-Visual and auditory EPs
-Neuro-ophthalmologic exam
-Started seeing psychiatrist
Year 3 (present):
-All the same blood tests, plus syphilis and rheumatoid factor and ANA again
-Full allergy scratch test panel
Both neurologists--the very bad one from the first year and the excellent one from last year--basically told me I should try to relax and be happy I don't have MS or any other chronic disease. So I'm very hesitant to go back. They read me as being a neurotic hypochondriac and IF any of this is due to anxiety, then being told it's all in my head certainly isn't going to help relieve any of that anxiety. (Two years ago when it started I wasn't taking any medication at all; now I am on Zoloft, Wellbutrin, Klonopin, and Seroquel for anxiety/depression/possible conversion disorder and while the physical symptoms shift and migrate and evolve and come and go, the intensity and disruption to my life is the same as before I was medicated and was very active.)
Year 1:
-Blood tests (HIV, CBC, blood sugar, B-vitamins)
-Brain and C-spine MRI
-EMG/NCV
Year 2:
-Blood tests (HIV, Lyme, CBC, blood sugar, vitamins, testosterone and free testosterone, thyroid panel, and ANA test for lupus, etc.)
-Brain and C-, T-, and L-spine MRI
-EMG/NCV
-EEG
-Visual and auditory EPs
-Neuro-ophthalmologic exam
-Started seeing psychiatrist
Year 3 (present):
-All the same blood tests, plus syphilis and rheumatoid factor and ANA again
-Full allergy scratch test panel
Both neurologists--the very bad one from the first year and the excellent one from last year--basically told me I should try to relax and be happy I don't have MS or any other chronic disease. So I'm very hesitant to go back. They read me as being a neurotic hypochondriac and IF any of this is due to anxiety, then being told it's all in my head certainly isn't going to help relieve any of that anxiety. (Two years ago when it started I wasn't taking any medication at all; now I am on Zoloft, Wellbutrin, Klonopin, and Seroquel for anxiety/depression/possible conversion disorder and while the physical symptoms shift and migrate and evolve and come and go, the intensity and disruption to my life is the same as before I was medicated and was very active.)
Hey, Artist!
MS symptoms manifest in more than one place in your body. For example, if you were having problems with your legs only, a doctor would look at your spine for the cause. But if you're having problems with legs and eyes, that's a little different. MS can attack many different parts of your body.
All I can say is that you're experiencing neurological symptoms in more than one part of your body. Your next step is to go to a neuro and get a full exam.
Personally, I always have quasi-relapses during the spring. Don't know why. My first relapse ever was in March 2007.
MS symptoms manifest in more than one place in your body. For example, if you were having problems with your legs only, a doctor would look at your spine for the cause. But if you're having problems with legs and eyes, that's a little different. MS can attack many different parts of your body.
All I can say is that you're experiencing neurological symptoms in more than one part of your body. Your next step is to go to a neuro and get a full exam.
Personally, I always have quasi-relapses during the spring. Don't know why. My first relapse ever was in March 2007.
My opinion (for what it's worth, LOL) would be to call your primary doctor. There are soo many people here who can answer your questions far better than I can since I'm pretty new to this myself. You're having difficulty walking which is one of the things they said to call about (although not a week yet) and definite bladder changes. It's not TMI by the way. You can talk about any symptoms here. Many of us have the same issues!!
I'm sure some of the more experienced MSer's here will answer soon so hang in there. There are so many things that mimic MS and it's better left to the professionals to figure it out. At the very least it will ease your mind to talk to someone.
Chris
I'm sure some of the more experienced MSer's here will answer soon so hang in there. There are so many things that mimic MS and it's better left to the professionals to figure it out. At the very least it will ease your mind to talk to someone.
Chris
Big update: I was getting ready to go for work, sitting in a chair at home, and both of my feet suddenly got pins-and-needles pain that came on quickly and became so intense I ended up lying on the floor on my stomach and kicking my feet. The severe pain only lasted a few minutes. I'm still at home on the floor typing this on my laptop and my feet are tingling--little pin pricks popping up here and there and just moving around--but it's not terribly painful like it was a few minutes ago. Is this just a case of circulation or the way I was sitting pressing on my sciatic nerves or something? It seems like with MS, this sort of thing probably wouldn't improve simply by changing position. I'm afraid to stand up now, but I'll need to go to work in a couple of minutes. Agh.
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