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Follow-Up to Previous Post ('Probably Not MS, but...')
A couple of weeks ago, I wrote a (long) post about these strange/unexplained symptoms I've had that are consistent with MS--but last year I had MRIs w and w/o contrast of my brain and lower back, as well as an EMG, (Please skip to paragraph four if you've read all the background already.) and none of the tests showed any signs of demyelination. My brain is "unremarkable" (haha) and my L5-S1 shows a slight disc bulge with minor nerve crowding for the nerves entering, but not exiting, S1, but no other issues. Also had blood tests for HIV (neg), B12 (normal), glucose (normal), CBC, etc., and everything was normal except for slightly elevated calcium.
The symptoms started last April 4 (2010) with severe pain and tingling in my feet and lower legs while I was walking, and then extreme dizziness--it literally felt like the ground had shaken under my feet, as if there had been an earthquake. The foot/leg pain persisted severely for several days (I called in sick and just stayed in bed), and then I was uncoordinated/off balance and couldn't think clearly for months. Around August, I'd guess, the symptoms slowly improved. I also have extreme anxiety and major depression and about three months ago began seeing a psychiatrist. I am now medicated with low doses of Wellbutrin, Zoloft, and Klonopin for anxiety. I wasn't experiencing the neurologic symptoms when I started seeing my psychiatrist.
About three weeks ago, my MS-like symptoms hit hard again, first with pain in my feet (and now tingling in my fingertips, around my ears, and randomly on my face, usually as numbness and itchiness, and usually on one side at a time. Then my vision went out of focus, which has happened on and off for many years, and then the vertigo started and again I just couldn't think. My psychiatrist says these symptoms could be caused by anxiety, but the medications haven't improved them at all.
I fully believe that anxiety can produce psychosomatic symptoms and I understand that all these symptoms can be consistent with that. But this week, I cannot help but have gone back to feeling like this is not all in my head. I walk to work--just over a mile each way--and since it has been warm or hot here in D.C., the walk has been awkward. I will be walking fine, and then my legs will seem to stop communicating with one another. I concentrate on synchronizing them, but I have to slow down and as I move my legs, one or both will feel like it's about to start shaking, although I don't think either does outwardly. It's really bizarre, as if there's an electrical current making the feeling jelly-like, but the movement isn't necessarily affected. That has been so pronounced over the past couple of weeks that I started searching online for this as a symptom and ended up back here at the MS forum. Then I read about the "hot bath test."
I have an MFA in creative writing, and I used to do all of my writing in the bath--I'd sit in there for hours with coffee and write. I haven't done that for a couple of years, and I hardly ever take baths anymore. Yesterday morning, I took a bath (104-107 degrees) for about 15 minutes and read a book. After about 10, my vision went blurry (I got reading glasses last year because of this happening in the tub.), and shortly thereafter my concentration was gone and I had to put the book down. I got out after 15 and felt shaky. I lay in bed feeling extremely weak and my fingers and hands trembled uncontrollably for probably 30-45 minutes. I had drunk about three cups of coffee before the bath, and I thought it could have been a caffeine-induced reaction, so I took another hot bath last night at 10pm and all the same things happened, except then I noticed that the soles of my feet stung when I stepped on the ground and my feet and lower legs felt prickly and itchy for hours. Obviously, I didn't sleep well. I realized that the prickling/itching feeling after baths has happened for years, and I've always attributed this sensation to dry skin from bathing too long (maybe it is?).
I am so frustrated. I feel like I'm obsessed with self-diagnosing with MS, which is absolutely insane, but every time my life is seriously interrupted with bizarre symptoms, I look online and end up back at MS reference information. And yet "multiple sclerosis" by definition means multiple scars on the brain or spine, and my MRIs last year didn't show any. I don't WANT to have multiple sclerosis, but I don't WANT these symptoms that are limiting my daily living, either, and I'm really craving some kind of diagnosis or explanation. The doctors last year ultimately told my brain is probably just causing these symptoms from anxiety, and my shrink agrees it could be that. I'm really losing my mind because I am certain now that this is not all in my head. I just don't know what to do next. :(((
The symptoms started last April 4 (2010) with severe pain and tingling in my feet and lower legs while I was walking, and then extreme dizziness--it literally felt like the ground had shaken under my feet, as if there had been an earthquake. The foot/leg pain persisted severely for several days (I called in sick and just stayed in bed), and then I was uncoordinated/off balance and couldn't think clearly for months. Around August, I'd guess, the symptoms slowly improved. I also have extreme anxiety and major depression and about three months ago began seeing a psychiatrist. I am now medicated with low doses of Wellbutrin, Zoloft, and Klonopin for anxiety. I wasn't experiencing the neurologic symptoms when I started seeing my psychiatrist.
About three weeks ago, my MS-like symptoms hit hard again, first with pain in my feet (and now tingling in my fingertips, around my ears, and randomly on my face, usually as numbness and itchiness, and usually on one side at a time. Then my vision went out of focus, which has happened on and off for many years, and then the vertigo started and again I just couldn't think. My psychiatrist says these symptoms could be caused by anxiety, but the medications haven't improved them at all.
I fully believe that anxiety can produce psychosomatic symptoms and I understand that all these symptoms can be consistent with that. But this week, I cannot help but have gone back to feeling like this is not all in my head. I walk to work--just over a mile each way--and since it has been warm or hot here in D.C., the walk has been awkward. I will be walking fine, and then my legs will seem to stop communicating with one another. I concentrate on synchronizing them, but I have to slow down and as I move my legs, one or both will feel like it's about to start shaking, although I don't think either does outwardly. It's really bizarre, as if there's an electrical current making the feeling jelly-like, but the movement isn't necessarily affected. That has been so pronounced over the past couple of weeks that I started searching online for this as a symptom and ended up back here at the MS forum. Then I read about the "hot bath test."
I have an MFA in creative writing, and I used to do all of my writing in the bath--I'd sit in there for hours with coffee and write. I haven't done that for a couple of years, and I hardly ever take baths anymore. Yesterday morning, I took a bath (104-107 degrees) for about 15 minutes and read a book. After about 10, my vision went blurry (I got reading glasses last year because of this happening in the tub.), and shortly thereafter my concentration was gone and I had to put the book down. I got out after 15 and felt shaky. I lay in bed feeling extremely weak and my fingers and hands trembled uncontrollably for probably 30-45 minutes. I had drunk about three cups of coffee before the bath, and I thought it could have been a caffeine-induced reaction, so I took another hot bath last night at 10pm and all the same things happened, except then I noticed that the soles of my feet stung when I stepped on the ground and my feet and lower legs felt prickly and itchy for hours. Obviously, I didn't sleep well. I realized that the prickling/itching feeling after baths has happened for years, and I've always attributed this sensation to dry skin from bathing too long (maybe it is?).
I am so frustrated. I feel like I'm obsessed with self-diagnosing with MS, which is absolutely insane, but every time my life is seriously interrupted with bizarre symptoms, I look online and end up back at MS reference information. And yet "multiple sclerosis" by definition means multiple scars on the brain or spine, and my MRIs last year didn't show any. I don't WANT to have multiple sclerosis, but I don't WANT these symptoms that are limiting my daily living, either, and I'm really craving some kind of diagnosis or explanation. The doctors last year ultimately told my brain is probably just causing these symptoms from anxiety, and my shrink agrees it could be that. I'm really losing my mind because I am certain now that this is not all in my head. I just don't know what to do next. :(((
Well, I am so very glad to hear that things are about to b moving along for u in all this. I'm tryin to figure out how to make this print begger so it won't b hard for anyone to read.
Good luck A.L.
Kelli
Good luck A.L.
Kelli
Thanks, Kelli (and everyone). Yesterday I was all screwy at work and someone who has diabetes told me that our office provides a "health advocate" service and I called it. They said they're going to find me a new doctor who's rated well by patients and close to me, as well as a neurologist near me, both of whom are in my insurance network. They're going to explain my problems as I explained them, as well as the tests I had last year, and then give me all the contact information to set up my own appointments ASAP. I wish I had known about this last year. It's actually a big relief. So now I will do what ess and others have said and put the responsibility on the doctors to figure out what's wrong with me. Meanwhile, though, it's really hard just to deal with it. Last night my vision was so screwy that I just gave up trying to read or watch TV and I went to bed at 8:00. My annual review at work is today and I feel almost tipsy and can't think straight, so that's not going to be fun, either. Oh well. That's life, I guess.
I am so sorry u are having to go through all this. Hugs to u. Hope u truly find out wats going on.
Kelli
Kelli
You're right. Thank you. I'm working on finding a GP and a neuro who will both take my insurance. Thanks for putting up with my whining and obsessiveness.
You mention one neurologist whom you saw some time ago. There are loads of neuros in DC and environs, including quite a few who are very knowledgeable about MS.
Many members here have seen numerous neuros---6 or more is not unusual. I include myself in that category. So I strongly urge you to put all that energy you are using on self-diagnosis to a better use. Find a doctor who will listen to you, and who will keep at it till you have some answers.
A good doctor will be proactive. Let him or her run the show. You can have mental health issues and still have MS, of course, but teasing out all the possibilities is the job of an expert. Your job is to find that expert. Keep at that, and good luck.
ess
Many members here have seen numerous neuros---6 or more is not unusual. I include myself in that category. So I strongly urge you to put all that energy you are using on self-diagnosis to a better use. Find a doctor who will listen to you, and who will keep at it till you have some answers.
A good doctor will be proactive. Let him or her run the show. You can have mental health issues and still have MS, of course, but teasing out all the possibilities is the job of an expert. Your job is to find that expert. Keep at that, and good luck.
ess
Thank you both. I do realize I am being obsessive and overreactive. Like the neuro told me last year, I can try to just ignore the symptoms and live with them. I do that at home when I just stay in bed most of the time and if my eyes get too blurry, I just lie down and listen to music or sleep. But at work, it's impossible. My job requires a lot of editing and writing, and not being able to focus visually or mentally is a huge hindrance and I literally cannot ignore it because it interferes with my productivity. And when I occasionally stumble in the office, I feel a need to tell people outright that I am not drunk or drugged. It's embarrassing, but it could also count against me at work that I have all these behaviors that mimic intoxication.
The medications I am currently on are Wellbutrin (100mg), Zoloft (75mg) and Klonopin (1/4mg morning and night). I realize that these can have similar effects to the ones I've described, but the big hitch is that I just started taking these medications three months ago. I had all the symptoms (except the numb ear) last year, and I've had foot numbness/tingling, vision, and occasional cognitive problems semi-regularly--they all seem to come together--since I was about 25 (8 years ago). So it seems really unlikely that the psych medications are causing those same (anxiety-related?) symptoms.
The medications I am currently on are Wellbutrin (100mg), Zoloft (75mg) and Klonopin (1/4mg morning and night). I realize that these can have similar effects to the ones I've described, but the big hitch is that I just started taking these medications three months ago. I had all the symptoms (except the numb ear) last year, and I've had foot numbness/tingling, vision, and occasional cognitive problems semi-regularly--they all seem to come together--since I was about 25 (8 years ago). So it seems really unlikely that the psych medications are causing those same (anxiety-related?) symptoms.
COMMUNITY LEADER
In your original post you said "I don't WANT to have multiple sclerosis, but I don't WANT these symptoms that are limiting my daily living...." I think you need to acknowledge that the main reason that these sx are limiting your daily living is because you are obsessing over them day after day. Seriously its time to stop, and thats regardless of if there is a medical condition other than mental health.
Anybody and I do mean anybody that is osbsessing about their sx, is going to find life damb hard and they are going to find it even harder if something really big hits them. Ok lets be honest here, if god forbit it does turn out to be something like MS, you are going to need coping skills and there is no better time than the pressent, to get them!
The one thing you havent really mentioned, is the medication your on for your mental health condition. Personally, that would be the first thing i'd be looking into, many of these type of medications have adverse side affects, on there own or when combined with others. Please look into this, it could be the simple answer or not but you need to know or you will continue the obsession.
I am meaning no disrespect, but trying to get you to rationalise what you are doing to your self. The more you give these sx your focus the more in focus they become, you need to challenge them by not letting them get stuck in your mind to the point that you can't function. The danger as I see it, is not your sx but your obsessional behavior towards them. Please try and stop because it will do you no good what so ever, you know this isn't helping you so please try and stop.
HUGS..........JJ
Anybody and I do mean anybody that is osbsessing about their sx, is going to find life damb hard and they are going to find it even harder if something really big hits them. Ok lets be honest here, if god forbit it does turn out to be something like MS, you are going to need coping skills and there is no better time than the pressent, to get them!
The one thing you havent really mentioned, is the medication your on for your mental health condition. Personally, that would be the first thing i'd be looking into, many of these type of medications have adverse side affects, on there own or when combined with others. Please look into this, it could be the simple answer or not but you need to know or you will continue the obsession.
I am meaning no disrespect, but trying to get you to rationalise what you are doing to your self. The more you give these sx your focus the more in focus they become, you need to challenge them by not letting them get stuck in your mind to the point that you can't function. The danger as I see it, is not your sx but your obsessional behavior towards them. Please try and stop because it will do you no good what so ever, you know this isn't helping you so please try and stop.
HUGS..........JJ
OK. Start thinking like a Neurologist. MS is a diagnosis of exclusion. MRI of the brain was clear. So what else? EMG was normal. So, maybe the nervous systems (CNS and Peripheral) are being effected by something else like the endocrine system. I'd assume typical things like Thyroid were covered in the basic Chem Panel.
Hypercalcaemia (elevated serum calcium) can be associated with hyperparathyroidism. So, one option might be to consider the seeing an Endocrinologist to see is if hormones are effect the nervous system. Another route might be to positively rule out Lyme's disease by seeing a Lyme Literate MD in the DC area. Being in the DC area, if you have been in the woods or grasslands of the East Coast withing the last few years, Lyme's disease should be ruled out. It can effect the nervous system, by may not present lesions on an MRI.
These are just some thoughts, but maybe a neurologist isn't finding anything because it is outside the Nervous System and maybe the psychiatrist isn't finding anything because it is not a physical medicine issue.
Bob
Hypercalcaemia (elevated serum calcium) can be associated with hyperparathyroidism. So, one option might be to consider the seeing an Endocrinologist to see is if hormones are effect the nervous system. Another route might be to positively rule out Lyme's disease by seeing a Lyme Literate MD in the DC area. Being in the DC area, if you have been in the woods or grasslands of the East Coast withing the last few years, Lyme's disease should be ruled out. It can effect the nervous system, by may not present lesions on an MRI.
These are just some thoughts, but maybe a neurologist isn't finding anything because it is outside the Nervous System and maybe the psychiatrist isn't finding anything because it is not a physical medicine issue.
Bob
Hi ess,
I obviously was writing that last update when you were writing yours (or I hadn't refreshed and read yours, anyway, before my last bath). I am definitely obsessing with this; I realize that. I'll stop taking hot baths. But I do feel compelled to figure out what is going on, and last year the neurologist basically told me it's all in my head. I'm trying to figure out where anxiety is meeting objective (as objective as possible) physical reactions to various triggers. It's probably not healthy, but honestly, if this is all psychosomatic and I can't find a way to make it stop, then I'm going to COMPLETELY lose my mind. It's so frustrating.
I obviously was writing that last update when you were writing yours (or I hadn't refreshed and read yours, anyway, before my last bath). I am definitely obsessing with this; I realize that. I'll stop taking hot baths. But I do feel compelled to figure out what is going on, and last year the neurologist basically told me it's all in my head. I'm trying to figure out where anxiety is meeting objective (as objective as possible) physical reactions to various triggers. It's probably not healthy, but honestly, if this is all psychosomatic and I can't find a way to make it stop, then I'm going to COMPLETELY lose my mind. It's so frustrating.
Update #2: Just took a hot bath (107) for 15 minutes followed by a short shower (3-4 min). My feet, ankles, and the tops of my hands are all prickly; the soles of my feet are stinging. As I stood up in the bath, I was very unsteady on my feet and lightheaded. I thought this might be from having stood up too quickly and I closed my eyes to wait out the dizziness. My eyes were closed the whole time I was standing and the whole time I "saw" a sort of bagel-shaped spot that was very dark inside that spread out to a bright violet color, and the edges were bright yellow-green. This dissipated almost immediately after I turned off the water. My vision was OK before I took the bath, but it's very unfocused now. My fingers are trembling on both hands. When I grip one hand with the other, I can see that both forearms and hands are trembling, as well. Walking is very slightly awkward/off balance as it usually is when I first wake up. I am slightly light-headed but not all-out dizzy. My heart is pounding, as it usually does after a very hot bath or shower (blood pressure, I presume--can that cause all these effects, as well?). My left ear and jaw are tingling more than they were before the bath, similarly to my feet. In the time it has taken to write this, my feet have stopped stinging (pain), but they're both tingling.
No, the doctor didn't order a cervical spine MRI.
An interesting (to me) update: last night after work, I took two Klonopin (clonazapam--each pill .5mg totaling 1mg for both) because my symptoms were so strong yesterday--again, I'm trying to figure out if anxiety really could be causing the symptoms. I took a 20-minute bath and, while my vision became a little blurry and my feet and lower legs were extremely prickly and itchy for about 20 minutes after I got out, I didn't have the physical tremors (fingers and hands shaking uncontrollably) that I had had after the last three baths. I wonder if that could mean that symptom really was psychosomatic?? I took the bath around 7:00 and I couldn't say awake past about 8:15, which is a pretty early bedtime for me.
An interesting (to me) update: last night after work, I took two Klonopin (clonazapam--each pill .5mg totaling 1mg for both) because my symptoms were so strong yesterday--again, I'm trying to figure out if anxiety really could be causing the symptoms. I took a 20-minute bath and, while my vision became a little blurry and my feet and lower legs were extremely prickly and itchy for about 20 minutes after I got out, I didn't have the physical tremors (fingers and hands shaking uncontrollably) that I had had after the last three baths. I wonder if that could mean that symptom really was psychosomatic?? I took the bath around 7:00 and I couldn't say awake past about 8:15, which is a pretty early bedtime for me.
Just wondering as i had a lot of the same symptoms you have, i was initially diagnosed with MS, which turned out to be a misdiagnosis,
What I actually had was Cervical spondylitic Myelopathy
I had surgery back in March and all my symptoms have now gone except for the pain behind my eyes, it might be worth checking out did they do a cervical MRI ??
Tyler
What I actually had was Cervical spondylitic Myelopathy
I had surgery back in March and all my symptoms have now gone except for the pain behind my eyes, it might be worth checking out did they do a cervical MRI ??
Tyler
Thanks to everyone for your replies. Everything is worse today. Itching, numbness and tingling in my fingertips and now even the left side of my face and especially my ear, and for the first time ever I had double vision for the first half of the day, but it has mostly corrected now--it's just a little out of focus. I felt like I was walking through water on the mile-long walk to work this morning. This is do maddening.
Oops sorry about that! Thanks for the correction Bob. It is hard to understand this technical stuff in laymen's terms :D
Actually, they are not "slices," but reconstructions. Once the T2 and FLAIR sequence is acquired, the computer reconstructs the sagittal and axial "views" form the 3D data set it has acquired during the scan. The scan contains 4 values for each sequence x, y, z , and voxel. So the typically do Scout, T1, T2, FLAIR and T1 with Contrast when they are doing the brain.
The axial, coronal and sagittal are all computer magic.
Bob
The axial, coronal and sagittal are all computer magic.
Bob
I feel for you. I am currently told it is in my head too. Heat makes everything worse so I can't imagine how that is a "mental" issue. One thing I keep saying is--if all of these things are happening "physically" wouldn't it be a natural reaction to feel "anxious" or "depressed"? Why do drs. always go the other way around? SOOOO frustrating!!
I wondered about the SAG and AXL too so I looked it up. Here is what i found: SAG (sagittal ) and Axl (axial) are the directions that they slice the layers of the MRI and denote different angels of viewing. Here is a short explanation:
A sagittal view is a picture of the brain laterally (from the side) in which the features of the face will be visible.
An axial view is a photograph from the top of the brain, which will make the brain look like a long oval.
A coronal view is a picture from the front of the brain, with clearly identified dark patches where the eyes and mouth are and bright white patches around the sinuses.
Source- eHow.com http://www.ehow.com/how_5898543_read-mri-brain-scan.html#ixzz1PkErDmRM
I wondered about the SAG and AXL too so I looked it up. Here is what i found: SAG (sagittal ) and Axl (axial) are the directions that they slice the layers of the MRI and denote different angels of viewing. Here is a short explanation:
A sagittal view is a picture of the brain laterally (from the side) in which the features of the face will be visible.
An axial view is a photograph from the top of the brain, which will make the brain look like a long oval.
A coronal view is a picture from the front of the brain, with clearly identified dark patches where the eyes and mouth are and bright white patches around the sinuses.
Source- eHow.com http://www.ehow.com/how_5898543_read-mri-brain-scan.html#ixzz1PkErDmRM
The power of the MRI on the brain doesn't matter. The lesions are easily found on the 1.5. It is because the spine is such a confined space that a higher resolution is needed.
Bob will have to answer what those SAG, Axl mean. I have no idea.
Bob will have to answer what those SAG, Axl mean. I have no idea.
I just looked at the MRI scans on DVD (the report doesn't mention what power the MRI was) and the pictures are all labeled either Sag or Axl T1 or T2...is that what you're referring to? My neurologist only read the MRI report from the radiologist--he didn't look at the actual images (which I brought on DVDs), and that kind of irked me. But then he ordered the EMG as a follow up. I didn't pursue anything after that and, like I wrote above, the severe symptoms eventually subsided for the most part until a few weeks ago. I forgot how upsetting they were last year and thought it probably was just panic attacks, but the psych meds aren't helping the symptoms AT ALL.
That should have been does NOT show up in the lumbar spine...opps
No, that is the lumbar that was run. You need one on your cervical spine. I would highly recommend asking your neuro to run one on a 3t because it is a higher resolution. There are some of us that have lesions ONLY on our spine and brain stem...None on the brain. (I have one but it hasn't been decided if it is age related or MS). Please make sure that it isn't done on 1.5tMRI. Truly many will say that their's showed up. However, there are a few (I am one) that didn't show on the 1.5. Don't be one of us. Your body will lose so much strength waiting for help.
And many of your symptoms sound like me. There is something happening that is neurological. I remember my first idiot neuro trying to blame it on depression/anxiety but at least I voiced up. I told him "You find out why my body isn't working and it will be gone". I wouldn't take the damn meds for it.
No, that is the lumbar that was run. You need one on your cervical spine. I would highly recommend asking your neuro to run one on a 3t because it is a higher resolution. There are some of us that have lesions ONLY on our spine and brain stem...None on the brain. (I have one but it hasn't been decided if it is age related or MS). Please make sure that it isn't done on 1.5tMRI. Truly many will say that their's showed up. However, there are a few (I am one) that didn't show on the 1.5. Don't be one of us. Your body will lose so much strength waiting for help.
And many of your symptoms sound like me. There is something happening that is neurological. I remember my first idiot neuro trying to blame it on depression/anxiety but at least I voiced up. I told him "You find out why my body isn't working and it will be gone". I wouldn't take the damn meds for it.
I don't think so? The MRIs were of the brain and lumbar spine...I'm looking @ the report, which breaks down the findings by the following: T12-L1, L1-L2, L2-L3, L3-L4, L4-L5, L5-S1.
You said you have had an MRI of your lower back. Has one been run on the cervical spine? MS does show up in the lumbar.
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Klonopin is often used to treat tremors. Also anxiety, so I think experimenting with it doesn't prove anything.
But experimenting with hot baths can be dangerous! Please don't do that again. If you have MS, the symptoms you get when hot like that may not abate afterwards, and you'll be in big trouble. We've had people here report that they became so weak they needed help getting out of the bath, and I gather you live alone. So please stop that.
I don't know whether or not you have MS, but you do seem to be obsessing, with these various experiments and so forth. A much better plan would be to find really good medical help to determine what you do have. Obviously something is wrong, but leave that to the professionals. Try to concentrate on something else a while. You don't want to confuse your psychiatric issues with MS, but even more important, you don't want doctors to label you with various unpleasant psychiatric names. Then it would be all the more difficult to get an accurate diagnosis of some neurological disorder.
Sending good wishes,
ess