Aa
Does this sound like MS?
Thanks you for reading this post. I hope to tap into some of the expertise from those of you more experienced with MS and its symptoms than I am. For four weeks I have had some minor balance issues. You wouldn't know it from watching me, but I feel it as I walk--especially when I walk fast. I'm just a little off. Then one morning my right eye felt some pressure behind it. Not pain, really, and I had no loss of vision or fuzziness. But I'm almost certain that my eyelid under that eye is sagging just a smidge...that eye has always appeared a tad smaller than the other, and now it appears just a tad bigger. Nex, for the past three weeks, my legs have felt a little wobbly. They generally feel worse in the afternoon after I've been teaching on my feet all day, but this is not normal for me. My legs rarely if ever feel tired or worn. My fine motor skills in my hands has been off for a few weeks as well. My eyes were twitchy last week, but now they're better, I think, but I'm noticing a lot of twitchiness when I'm in bed or just waking up. I worry a lot and hoped initially that my high-anxiety disposition might be playing a role. I visted my GP and then a neurologist, who ordered blood tests (10 vials, Lyme, syphilis, B-12, etc.) a brain MRI, and a LP. I'm still waiting on the results of the blood and LP, but the brain MRI came back normal. However, since I'm only 4 weeks into my symptoms, could it just be that the lesions are developed enough yet to show up?
Should I be pushing for an MRI of the spine and neck? Is it unusual for all of these symptoms to be presenting at once?
I have a cousin with MS and another with MG, so I'm worried it's an autoimmune disorder. I'm a 37-year-old male and grew up in Illinois (I've read that this increases my risk of MS). In my reading, I've found that my age, sex, and presentation may suggest primary progressive, which has me even more terrified. I have three beautiful little girls and a loving wife and I guess the only positive of the last month is that I appreciate every moment with them that much more.
Thanks for any info, advice, and perspective you can offer.
Chris
Should I be pushing for an MRI of the spine and neck? Is it unusual for all of these symptoms to be presenting at once?
I have a cousin with MS and another with MG, so I'm worried it's an autoimmune disorder. I'm a 37-year-old male and grew up in Illinois (I've read that this increases my risk of MS). In my reading, I've found that my age, sex, and presentation may suggest primary progressive, which has me even more terrified. I have three beautiful little girls and a loving wife and I guess the only positive of the last month is that I appreciate every moment with them that much more.
Thanks for any info, advice, and perspective you can offer.
Chris
Thanks for helping--I should have offered guidance, too. I work at a high school, and you would have made a fine guidance counselor. :)
Hi! Welcome to the forum! I'm so sorry you're not feeling well, and I wish I knew more about the side effects of the medication you were taking. Probably by now you have informed your doctor about what has happened, but if not, please post your own question so others on the forum can help you. You got lost here, I'm afraid to say!
Go up to the top and go to the blue "Post Question" button. It will lead you through the steps after you log in. Good luck, and I hope you feel better!
Momzilla*
Go up to the top and go to the blue "Post Question" button. It will lead you through the steps after you log in. Good luck, and I hope you feel better!
Momzilla*
Thanks for all the feedback and info.
The dizziness of the past six weeks has been mostly when I'm walking, although I've felt some weirdness in the sitting position at times, although milder. On an average day, though, I feel it most acutely in the morning when I'm walking through a parking lot or in the evening when I'm walking through a store. But what's weird is that some days are better than others, and if the ear nerves were damaged, shouldn't they get gradually better? Or is the path to recovery not so linear? I had a span of about 5 days a few weeks ago when I felt just about perfect in all aspects. Why would it then come back?
And I passed out on a Saturday. Felt foggy and tired for a few days after and then dizziness came on four days after faint. Would ear damage take four days to make me feel off?
Now I've been on the 25 mg of Zoloft for two days and I'm feeling more dizziness than ever. I know a side-effect of Zoloft is dizziness, and this dizziness seems more constant now--I'm a little dizzy just sitting here typing this. But since I just flew for hours yesterday back from AZ and have strayed from the Swank diet after six weeks of monastic adherence and have gone on Zoloft (not to mention I may have an anxiety problem), I don't know which variable to pin as the cause.
And I keep twitching. Random muscles just do a quick grab for a split second. For the past day or so, it's been like 30 times. Can anxiety cause twitches?
Dr. Teitel felt that the clean MRIs and lack of banding and lack of anything in his exam means no MS. He just seemed so certain about it, and I've read in so many places that you just can't be that certain. But at the same time I'm asking myself, at what point am I being vigilant in making sure it's not MS and at what point am I crossing the line into anxiety disorder? And the proteins being at 53 still bothers me. Since it was outside the 15-45 range, it actually was marked in the right column as flagged, so I'm a bit worried that he so quickly dismissed it as inconsequential. But like I said, I do respect his opinion....I'm just so unsure.
Anyway, thanks for the pupil info--that makes me feel better.
And thanks everyone for all the info and companionship you provide on here. You keep me afloat.
Chris
The dizziness of the past six weeks has been mostly when I'm walking, although I've felt some weirdness in the sitting position at times, although milder. On an average day, though, I feel it most acutely in the morning when I'm walking through a parking lot or in the evening when I'm walking through a store. But what's weird is that some days are better than others, and if the ear nerves were damaged, shouldn't they get gradually better? Or is the path to recovery not so linear? I had a span of about 5 days a few weeks ago when I felt just about perfect in all aspects. Why would it then come back?
And I passed out on a Saturday. Felt foggy and tired for a few days after and then dizziness came on four days after faint. Would ear damage take four days to make me feel off?
Now I've been on the 25 mg of Zoloft for two days and I'm feeling more dizziness than ever. I know a side-effect of Zoloft is dizziness, and this dizziness seems more constant now--I'm a little dizzy just sitting here typing this. But since I just flew for hours yesterday back from AZ and have strayed from the Swank diet after six weeks of monastic adherence and have gone on Zoloft (not to mention I may have an anxiety problem), I don't know which variable to pin as the cause.
And I keep twitching. Random muscles just do a quick grab for a split second. For the past day or so, it's been like 30 times. Can anxiety cause twitches?
Dr. Teitel felt that the clean MRIs and lack of banding and lack of anything in his exam means no MS. He just seemed so certain about it, and I've read in so many places that you just can't be that certain. But at the same time I'm asking myself, at what point am I being vigilant in making sure it's not MS and at what point am I crossing the line into anxiety disorder? And the proteins being at 53 still bothers me. Since it was outside the 15-45 range, it actually was marked in the right column as flagged, so I'm a bit worried that he so quickly dismissed it as inconsequential. But like I said, I do respect his opinion....I'm just so unsure.
Anyway, thanks for the pupil info--that makes me feel better.
And thanks everyone for all the info and companionship you provide on here. You keep me afloat.
Chris
I am new to this site and was diagnosed with MS last November when I had optic neuritis to the left eye. I was treated with steroids and untill now I was symptom free. In July I had a baby and my Neuro decided to start me on Avanex. I was feeling great and brain MRI was good in August. I generally have attacks during fall so on on Columbus day I administered my first shot of Avanex and 15 min after the shot I had developed rash on my chest, shoulders and stomach, tightness in the chest and flu like symptoms. I had tightness in the chest for 3 days, rash for 5 days and flu like symptoms for several hours. However, on the second day after the shot I began feeling weakness in my arm and leg muscles and on day 4 I developed eyes, head and neck pain. My Neuro took me off Avanex and said to start Copaxone in 3-4 weeks, however didn't really do anything about my complaints. I am 30 years old and have a 3 months old baby. I am extremely worried, since I do not know what to do. I know that muscular weakness all over the body is not common for MS neither is the pain in both eyes. I am assuming that maybe Avanex triggered an attack or something.
Can someone please help me make sence of it?
Thanks a lot and wish well for all of you.
Can someone please help me make sence of it?
Thanks a lot and wish well for all of you.
Thanks for all the feedback and info.
The dizziness of the past six weeks has been mostly when I'm walking, although I've felt some weirdness in the sitting position at times, although milder. On an average day, though, I feel it most acutely in the morning when I'm walking through a parking lot or in the evening when I'm walking through a store. But what's weird is that some days are better than others, and if the ear nerves were damaged, shouldn't they get gradually better? Or is the path to recovery not so linear? I had a span of about 5 days a few weeks ago when I felt just about perfect in all aspects. Why would it then come back?
And I passed out on a Saturday. Felt foggy and tired for a few days after and then dizziness came on four days after faint. Would ear damage take four days to make me feel off?
Now I've been on the 25 mg of Zoloft for two days and I'm feeling more dizziness than ever. I know a side-effect of Zoloft is dizziness, and this dizziness seems more constant now--I'm a little dizzy just sitting here typing this. But since I just flew for hours yesterday back from AZ and have strayed from the Swank diet after six weeks of monastic adherence and have gone on Zoloft (not to mention I may have an anxiety problem), I don't know which variable to pin as the cause.
And I keep twitching. Random muscles just do a quick grab for a split second. For the past day or so, it's been like 30 times. Can anxiety cause twitches?
Dr. Teitel felt that the clean MRIs and lack of banding and lack of anything in his exam means no MS. He just seemed so certain about it, and I've read in so many places that you just can't be that certain. But at the same time I'm asking myself, at what point am I being vigilant in making sure it's not MS and at what point am I crossing the line into anxiety disorder? And the proteins being at 53 still bothers me. Since it was outside the 15-45 range, it actually was marked in the right column as flagged, so I'm a bit worried that he so quickly dismissed it as inconsequential. But like I said, I do respect his opinion....I'm just so unsure.
Anyway, thanks for the pupil info--that makes me feel better.
And thanks everyone for all the info and companionship you provide on here. You keep me afloat.
Chris
The dizziness of the past six weeks has been mostly when I'm walking, although I've felt some weirdness in the sitting position at times, although milder. On an average day, though, I feel it most acutely in the morning when I'm walking through a parking lot or in the evening when I'm walking through a store. But what's weird is that some days are better than others, and if the ear nerves were damaged, shouldn't they get gradually better? Or is the path to recovery not so linear? I had a span of about 5 days a few weeks ago when I felt just about perfect in all aspects. Why would it then come back?
And I passed out on a Saturday. Felt foggy and tired for a few days after and then dizziness came on four days after faint. Would ear damage take four days to make me feel off?
Now I've been on the 25 mg of Zoloft for two days and I'm feeling more dizziness than ever. I know a side-effect of Zoloft is dizziness, and this dizziness seems more constant now--I'm a little dizzy just sitting here typing this. But since I just flew for hours yesterday back from AZ and have strayed from the Swank diet after six weeks of monastic adherence and have gone on Zoloft (not to mention I may have an anxiety problem), I don't know which variable to pin as the cause.
And I keep twitching. Random muscles just do a quick grab for a split second. For the past day or so, it's been like 30 times. Can anxiety cause twitches?
Dr. Teitel felt that the clean MRIs and lack of banding and lack of anything in his exam means no MS. He just seemed so certain about it, and I've read in so many places that you just can't be that certain. But at the same time I'm asking myself, at what point am I being vigilant in making sure it's not MS and at what point am I crossing the line into anxiety disorder? And the proteins being at 53 still bothers me. Since it was outside the 15-45 range, it actually was marked in the right column as flagged, so I'm a bit worried that he so quickly dismissed it as inconsequential. But like I said, I do respect his opinion....I'm just so unsure.
Anyway, thanks for the pupil info--that makes me feel better.
And thanks everyone for all the info and companionship you provide on here. You keep me afloat.
Chris
I reread your last post. Sorry. The neuro is hyposthesizing some mild damage to the inner ear from the episode of fainting. Okay, the inner is very delicate and gets "out-of-whack" (official medical term) fairly easily. Is your dizziness at all postiional?
Q
Q
Hi, I think that course of action, especially in light of the VNG indicating inner ear (peripheral) disease, sounds like a winner. If you did knock some crystals loose, called BPPV, then it is a totally treatable condition. My vertigo physician developed the now treatment which is now accepted world-wide, called the Epley Maneuvers. I have had the problem bilaterally. The proper evaluation for this is a neuro-otologist. Names of such specialists can be obtained from the VEDA -VEstibular Disorders of America website.
Also, 20% to 25% of the normal population have lifelong anisocoria (unequal pupils) which is noticable to the untrained eye. It is often intermittent and accentuated with excitement, exercise and anxiety. Depending on the way the two pupils differ is the important part. Generally people don't notice until they look closely for problems after having neurological symptoms.
It is always a good idea to deal with any anxiety that may be clouding the picture. With that taken care of then you can see what is left.
Quix
Also, 20% to 25% of the normal population have lifelong anisocoria (unequal pupils) which is noticable to the untrained eye. It is often intermittent and accentuated with excitement, exercise and anxiety. Depending on the way the two pupils differ is the important part. Generally people don't notice until they look closely for problems after having neurological symptoms.
It is always a good idea to deal with any anxiety that may be clouding the picture. With that taken care of then you can see what is left.
Quix
I feel I have to add this as it refers to "stress" and "autoimmune disorders":
Some external causes such as trauma or surgery to the eye, and some internal causes such as an unknown virus, an inflammatory condition, or a familial tendency have been suggested. In the case of trauma or surgery, it is believed that the damaged or cut nerve fails to regrow with all fibers running in the same direction for proper reattachment to the ciliary body. The propensity to affect women between 20 and 40 years of age more than men of all ages promoted one doctor to speculate that it may be, or related to, an autoimmune disorder, especially when the individual lives a stressful lifestyle and other related family members have suffered neurological diseases or disorders. Caffeine, a high sugar diet, or an imbalance in essential fatty acids that are important in maintaining nerve health may also be factors, but no studies have been identified supporting this hypothesis. This unusual pupillary reflex, also known as "tonic pupil," because it is slow to change, may also be associated with diabetes, alcoholism, a herpes viral infection, or a cranial arterial condition known as giant cell arteritis. Symptoms, in addition to the slow-to-respond, differently sized pupil of the affected eye, may include headache, as a result of the strain on the vision, a sensitivity to bright lights, and loss of some reflexes, especially the knee-jerk.
Marcie
Some external causes such as trauma or surgery to the eye, and some internal causes such as an unknown virus, an inflammatory condition, or a familial tendency have been suggested. In the case of trauma or surgery, it is believed that the damaged or cut nerve fails to regrow with all fibers running in the same direction for proper reattachment to the ciliary body. The propensity to affect women between 20 and 40 years of age more than men of all ages promoted one doctor to speculate that it may be, or related to, an autoimmune disorder, especially when the individual lives a stressful lifestyle and other related family members have suffered neurological diseases or disorders. Caffeine, a high sugar diet, or an imbalance in essential fatty acids that are important in maintaining nerve health may also be factors, but no studies have been identified supporting this hypothesis. This unusual pupillary reflex, also known as "tonic pupil," because it is slow to change, may also be associated with diabetes, alcoholism, a herpes viral infection, or a cranial arterial condition known as giant cell arteritis. Symptoms, in addition to the slow-to-respond, differently sized pupil of the affected eye, may include headache, as a result of the strain on the vision, a sensitivity to bright lights, and loss of some reflexes, especially the knee-jerk.
Marcie
Hi,
I was reading your post out of interest and did not intend to respond until I saw the sentence about your pupil being larger than the other one.
My left pupil is larger than my right and it is so noted in my Neuro's report. They apparently both react "crisply". It is permanently larger and does not g constrict or get smaller. It never used to be like that, only for the past 2 years and must have been there at my dignosis of MS although I never really noticed it before that. It is now very obvious to me when I look in the mirror. That left eye sort of stands out and I almost feel like it is staring (at me).
There is one other person on here that has the same thing - I think she lives in U.K.
This may not apply to you, I don't know, but you can read about it at
http://www.healthline.com/galecontent/adies-pupil
Best of luck
Marcie
I was reading your post out of interest and did not intend to respond until I saw the sentence about your pupil being larger than the other one.
My left pupil is larger than my right and it is so noted in my Neuro's report. They apparently both react "crisply". It is permanently larger and does not g constrict or get smaller. It never used to be like that, only for the past 2 years and must have been there at my dignosis of MS although I never really noticed it before that. It is now very obvious to me when I look in the mirror. That left eye sort of stands out and I almost feel like it is staring (at me).
There is one other person on here that has the same thing - I think she lives in U.K.
This may not apply to you, I don't know, but you can read about it at
http://www.healthline.com/galecontent/adies-pupil
Best of luck
Marcie
My tests are finished and I flew from FL to Tempe, AZ last night to get the opinion of Dr. Lawrence Teitel, who has treated my mother's TIA's for years and whose opinion I do respect. He said my VENG indicated peripheral probs, not CNS. Blood all normal. My brain MRI was normal (T1.5), my cervical spine MRI was normal (T1.0), and my spinal tap showed no elevated IgG, IgM, and no banding. My proteins were 53 (normal is 15-45), but he didn't think that was significant. He examined me rather thoroughly in the office and listened and took notes while I gave him a 15-minute history recounting the past two months. He actually stopped me and asked first about my childhood, etc. His theory is that when I passed out six weeks ago (I was getting my tear duct probed and I'm a big-time wuss), that since I was sitting in a chair and the blood did not return to my head quickly, that I damaged one or two of the five nerves in the ear (the gyroscopes or whatever they are). The balance issues were/are then peripheral and will resolve. He felt that all the symptoms since then--since onset of the other symptoms was within 10 days of that faint--were anxiety from the balance issues. I did read all about MS after the dizziness set in, so I guess it's possible. But I kept asking questions and he told me respectfully but point-blank, "You don't believe me." I told him I respected his opinion, but that I just didn't think anxiety could make my legs and hands wobbly. Anyway, he's going to put me on zoloft for a month to see if these issues resolve, and told me to call him if they don't. As far as my eye and the one pupil being larger, of course today they were the same size, but I swear they're not usually. Even my wife points it out to me. But today they were fine and I've now had three docs tell me that it constricts and dilates appropriately and that vision in the eye is actually 20/15. He said adrenaline could make the pupil larger at times, although I don't really understand how. He also said it may have always done that and I just never looked for it until now.
Quix, you wanted me to update you, and I've been reading from this site every day of the last 7 weeks and wanted to let you know what's happening.
I so hope I'm just crazy.
Quix, does this sound like a reasonable direction to move in?
Thanks.
Quix, you wanted me to update you, and I've been reading from this site every day of the last 7 weeks and wanted to let you know what's happening.
I so hope I'm just crazy.
Quix, does this sound like a reasonable direction to move in?
Thanks.
Thank you so much for the feedback. I very much appreciate the time you invested to answer my questions so thoroughly. I spoke with my neuro's nurse last week and asked for an MRI of the spine and they are currently waiting for approval for that. So hopefully I'll have that before my follow-up next week so the doc can discuss all the results at once.
Until today, I have been feeling close to 100% for the past five days, which has given me hope that if this were MS, that I might have RR rather than PP....disequilibrium not gone, but the leg strength has been back and the hand coordination/strength back. Also twitches diminished and sometimes gone. The first day I experienced like that, I took note of all I ate and have duped it every day in the hope that diet is helping. Banana and whole-grain bread in the morning, broccoli and tuna in olive oil for lunch, another tuna and more bread and a fruit at dinner.
Is a five-day 90% break from symptoms reason to believe in remission? Or is that typical of progressive, as well?
Now I have a headcold and I'm scared that my immune system (if this is MS) has plans for me. I feel a bit weaker today--not terrible, but not as smooth and strong as I've felt the last 5 days. I thought I was being vigilant about washing my hands and not touching my face with my fingertips, but evidently not vigilant enough.
Quix, if this were MS, and if my immune system were to elicit an attack, would I feel it 36 hours into the headcold?
I will certainly be hanging around. I used to hop onto the Internet to read about football; now I surf straight to this site to learn as much as I can and commiserate. :)
Thanks again.
Chris
Until today, I have been feeling close to 100% for the past five days, which has given me hope that if this were MS, that I might have RR rather than PP....disequilibrium not gone, but the leg strength has been back and the hand coordination/strength back. Also twitches diminished and sometimes gone. The first day I experienced like that, I took note of all I ate and have duped it every day in the hope that diet is helping. Banana and whole-grain bread in the morning, broccoli and tuna in olive oil for lunch, another tuna and more bread and a fruit at dinner.
Is a five-day 90% break from symptoms reason to believe in remission? Or is that typical of progressive, as well?
Now I have a headcold and I'm scared that my immune system (if this is MS) has plans for me. I feel a bit weaker today--not terrible, but not as smooth and strong as I've felt the last 5 days. I thought I was being vigilant about washing my hands and not touching my face with my fingertips, but evidently not vigilant enough.
Quix, if this were MS, and if my immune system were to elicit an attack, would I feel it 36 hours into the headcold?
I will certainly be hanging around. I used to hop onto the Internet to read about football; now I surf straight to this site to learn as much as I can and commiserate. :)
Thanks again.
Chris
Hello Millerman and welcome. Sorry to hear that you are suffering. I am one of the big three mimic diagnosees (grammar on that? lol). I have stroke, Chronic Ebstein Barr Virus and Neuropathy of the legs from diabetes. I completely agree that you know when something is wrong with yourself and you 'are not like before'.
Several of us have problems with keeping our potassium level up in the normal range, and that will definitely cause muscle twitching and spasm, just a possibility.
This is a great forum and hopefully will offer some comfort until you get your results back. Best wishes
Jazzy
Several of us have problems with keeping our potassium level up in the normal range, and that will definitely cause muscle twitching and spasm, just a possibility.
This is a great forum and hopefully will offer some comfort until you get your results back. Best wishes
Jazzy
Hi, there, Welcome to the forum. I'm glad to see more men joining in to keep Jon, Rick, John, and now Johnny company. I would love to see this become an all-inclusive group. I am the local MD someone spoke of up there, but I am not a neurologist and am not currently practicing. I do try to keep my info up-to-date. I was diagnosed with MS last winter.
Taken all together, I do not get a strong suspicion that MS is your problem, It sounds more like a viral insult causing the off-balance dizziness, the small muscle twitches ((a viral infection is notorious for setting off a fasciculation (twitching) syndrome)). Fatigue and tiredness in the extremities would go along with that. Did they check you for EBV Epstein Barr Virus?
The high-anxiety personality type and the having MS in the (distant) family will muddy the picture enormously. I do believe that even anxious people, if they are not full-blown "health anxiety" sufferers(hypochondriacs who truly believe that all sensations signify a life-threatening illness) can tell when symptoms are out of the norm for them. I gather from the way you speak that you have assessed what is happening and it doesn't feel like just anxiety (at least not all of it). But, that said, anxiety will heighten and magnify symptoms that are already present, and even bring normal odd sensations (which we all have) to the person's attention.
Especially, the combination of being generally anxious and mentioning that that cousins have neurological/autoimmune disorders will often get you dismissed outright - sometimes quite rudely. Your neuro was certainly dismissive in his body language, but, at least, he performed his job. He started the workup and has pretty much stayed on course, with one exception. I am very surprised at the LP before the MRI of the cervical and thoracic spine. I can tell you share that surprise. A certain number of people only have lesions in their spine. They are the smallest group. The most common is in both areas (I think) and then just brain lesions. Did the neuro found any abnormalities on your exam?
I absolutely do think if they have gone so far as to do the LP and the blood tests for the mimics (syphillis, Lyme, "sticky blood", vasculitis, HIV) then an MRI of the entire spinal cord with and without contrast is definitely in order.
I heartily agree, that THIS is a time to aggressively treat anxiety. The stress of considering that one may have MS is enormous, and you owe it to yourself to remove everything you can from the equation.
As to whether this would represent PPMS, I think you are way ahead of yourself. Also PPMS is often not a rapid trip downward. It can progress very slowly with short periods of stabilization, but it is not necessarily devastating. The grouping of symptoms in MS is as individual as a person's fingerprint. Soemone said that recently, and I like it. So, if this is MS, those are the symptoms you have.
About the tests still coming up. Carotid ultrasound - part of a workup for stroke, an MS mimic. The VENG is a VideoElectroNystagmoGram. This is a test of your balance and vestibular system. It can often tease out of the balance issues are peripheral in the inner ear (not MS) or central (possibly MS). The nerve studies are to see if there is a problem of the peripheral nerves - those nerves which have exited the spine - called a neuropathy. You have gotten a work up that many of us would trade our first-born for (I'm safe there). You should make sure that the test run for Lyme is not the standard ELISA, but a Western Blot which is sent to a lab experienced in testing for tick-borne illnesses. Your symptoms are certainly consistent with Lyme disease.
You asked if the MRI could be "normal" in appearance, because the lesions are too small to be detected or because they are all in the spine. The answer to that is yes. I will bump up my serious of discussions on MRI and MS. You might want to red it if you haven't. "MRIs, Lesions, and Symptoms."
Yes, by simply going through this you are nuts. You may join our forum Greek House - Hypo Gamma Chondria. We have Friday night bonfires and roast dismissive or rude neuro's. I'm not sure he qualifies...he was rude, but he is doing the million dollar work up... your call.
I hope this has helped and I apologize for being so tardy. Good luck. Stick around while all this is going down.
Quix
Taken all together, I do not get a strong suspicion that MS is your problem, It sounds more like a viral insult causing the off-balance dizziness, the small muscle twitches ((a viral infection is notorious for setting off a fasciculation (twitching) syndrome)). Fatigue and tiredness in the extremities would go along with that. Did they check you for EBV Epstein Barr Virus?
The high-anxiety personality type and the having MS in the (distant) family will muddy the picture enormously. I do believe that even anxious people, if they are not full-blown "health anxiety" sufferers(hypochondriacs who truly believe that all sensations signify a life-threatening illness) can tell when symptoms are out of the norm for them. I gather from the way you speak that you have assessed what is happening and it doesn't feel like just anxiety (at least not all of it). But, that said, anxiety will heighten and magnify symptoms that are already present, and even bring normal odd sensations (which we all have) to the person's attention.
Especially, the combination of being generally anxious and mentioning that that cousins have neurological/autoimmune disorders will often get you dismissed outright - sometimes quite rudely. Your neuro was certainly dismissive in his body language, but, at least, he performed his job. He started the workup and has pretty much stayed on course, with one exception. I am very surprised at the LP before the MRI of the cervical and thoracic spine. I can tell you share that surprise. A certain number of people only have lesions in their spine. They are the smallest group. The most common is in both areas (I think) and then just brain lesions. Did the neuro found any abnormalities on your exam?
I absolutely do think if they have gone so far as to do the LP and the blood tests for the mimics (syphillis, Lyme, "sticky blood", vasculitis, HIV) then an MRI of the entire spinal cord with and without contrast is definitely in order.
I heartily agree, that THIS is a time to aggressively treat anxiety. The stress of considering that one may have MS is enormous, and you owe it to yourself to remove everything you can from the equation.
As to whether this would represent PPMS, I think you are way ahead of yourself. Also PPMS is often not a rapid trip downward. It can progress very slowly with short periods of stabilization, but it is not necessarily devastating. The grouping of symptoms in MS is as individual as a person's fingerprint. Soemone said that recently, and I like it. So, if this is MS, those are the symptoms you have.
About the tests still coming up. Carotid ultrasound - part of a workup for stroke, an MS mimic. The VENG is a VideoElectroNystagmoGram. This is a test of your balance and vestibular system. It can often tease out of the balance issues are peripheral in the inner ear (not MS) or central (possibly MS). The nerve studies are to see if there is a problem of the peripheral nerves - those nerves which have exited the spine - called a neuropathy. You have gotten a work up that many of us would trade our first-born for (I'm safe there). You should make sure that the test run for Lyme is not the standard ELISA, but a Western Blot which is sent to a lab experienced in testing for tick-borne illnesses. Your symptoms are certainly consistent with Lyme disease.
You asked if the MRI could be "normal" in appearance, because the lesions are too small to be detected or because they are all in the spine. The answer to that is yes. I will bump up my serious of discussions on MRI and MS. You might want to red it if you haven't. "MRIs, Lesions, and Symptoms."
Yes, by simply going through this you are nuts. You may join our forum Greek House - Hypo Gamma Chondria. We have Friday night bonfires and roast dismissive or rude neuro's. I'm not sure he qualifies...he was rude, but he is doing the million dollar work up... your call.
I hope this has helped and I apologize for being so tardy. Good luck. Stick around while all this is going down.
Quix
Hi, Chris! Welcome to the forum!
I'm glad you found us, and it seems that, although your neurologist appears to be taking you lightly and examining his cell phone more carefully than you, he has ordered great testing for you. Many of us on the forum would give our left pinkies for some of the tests your doc has ordered in your first three weeks! (The right pinkies are so much more useful!) I'm sorry you suffered the spinal tap headache! How miserable!
About the anxiety, OF COURSE YOU'RE ANXIOUS! Anyone with new symptoms can develop anxiety. Which comes first, though, the chicken or the egg? Are your symptoms causing the anxiety or is anxiety causing your symptoms? We have a doctor in our midst who can explain 'conversion disorder' better than anyone here, and it's pretty rare. I suppose it's a possibility. Anxiety may be causing your symptoms. You state that you do have a predisposition of being an anxious person. Is there anything in your life right now that is causing increased anxiety? You don't have to share what it is, just acknowledge it exists.
Another scenario is you have something going on, and your anxiety is exacerbating these symptoms. I think we may have to wait and see what the test results say, and go from there. If you can, try to relax as much as you can. To keep occupied in the meantime, look on the forum for a post entitled "Timeline." It will help you prepare for your visit with the neurologist for the second opinion, which I think is an excellent idea.
It will help you organize your symptoms into a time ordered perspective, so your next doctor can perhaps help you better, if this one doesn't do the job! Keep us posted as to how the test results are coming.
I know it's so hard waiting. Feel well!
Momzilla*
I'm glad you found us, and it seems that, although your neurologist appears to be taking you lightly and examining his cell phone more carefully than you, he has ordered great testing for you. Many of us on the forum would give our left pinkies for some of the tests your doc has ordered in your first three weeks! (The right pinkies are so much more useful!) I'm sorry you suffered the spinal tap headache! How miserable!
About the anxiety, OF COURSE YOU'RE ANXIOUS! Anyone with new symptoms can develop anxiety. Which comes first, though, the chicken or the egg? Are your symptoms causing the anxiety or is anxiety causing your symptoms? We have a doctor in our midst who can explain 'conversion disorder' better than anyone here, and it's pretty rare. I suppose it's a possibility. Anxiety may be causing your symptoms. You state that you do have a predisposition of being an anxious person. Is there anything in your life right now that is causing increased anxiety? You don't have to share what it is, just acknowledge it exists.
Another scenario is you have something going on, and your anxiety is exacerbating these symptoms. I think we may have to wait and see what the test results say, and go from there. If you can, try to relax as much as you can. To keep occupied in the meantime, look on the forum for a post entitled "Timeline." It will help you prepare for your visit with the neurologist for the second opinion, which I think is an excellent idea.
It will help you organize your symptoms into a time ordered perspective, so your next doctor can perhaps help you better, if this one doesn't do the job! Keep us posted as to how the test results are coming.
I know it's so hard waiting. Feel well!
Momzilla*
Thanks for the info. My PCP plans to prescribe an anti-anxiety if everything else comes out negative (and I'd also like to see an infectious diseases doc in case this is Lyme or something), but I'm just not sure how my mind could do all this. Neuro already told me that he thought everything would come back normal and that this would prove to be a "chemical" (i.e., anxiety-induced) problem. He's been my neurologist of course for just three weeks and I'm not superimpressed (picking at thumb, examining his cell phone, and leaning back in his chair through half of "exam"). but he did order a bevy of tests: a nerve conduction, VENG, carotid ultrasound, EEG, blood work, brain MRI w/ and w/out contrast, and the LP. All those tests are done (I'm just coming out of my spinal-tap headache the last few days, in fact) and I'll learn the results from him in 12 days. My PCP already let me know that the brain MRI was normal. But I read that primary-progressive MSers (which tend to be male, median age 37 [I'm 37], and present with motor disturbances) tend to develop lesions on the spine. I don't know if I've done evoked potentials--is that the VENG? I already have an appt with a second neuro two days after I see this neuro for results to get a fresh set of eyes and a second opinion. My legs have been better the past few days and so has my fine motor with hands, but the slight dizziness remains (four weeks now) and I get twitches in legs/hands/chest occasionally--especially in bed. Not during day. I would love to be crazy. Thanks for the feedback.
Welcome to the forum Chris! I'm sorry you're having health issues and not getting any answers. It's really frustrating, and many many of us here are in the same situation. Was your brain MRI done both with and without contrast? New active lesions are supposed to show up more easily on the contrasted version. Did your neurologist say what is to happen from here? Was he supportive of you? Seemed sincere in wanting to help? (A lot of us have had crappy neurologists). Other tests that are usually done with MS diagnosis include NCS/EMG and evoked potential tests.
I have different symptoms than you, so I can't really relate in that way, but all my tests have been negative too, and its super frustrating. Try to hang in there, and I'm sure more people here will be chiming in soon.
Fishyfish
I have different symptoms than you, so I can't really relate in that way, but all my tests have been negative too, and its super frustrating. Try to hang in there, and I'm sure more people here will be chiming in soon.
Fishyfish
Hope your getting the answers you need. What you have described here doesn't sound like MS. I think you're probably right that Anxiety may be in play here.
I'm not a doctor, I just have MS and to me it doesn't sound typical (your symptoms) of MS. You may have something like Chronic Fatigue Syndrome or similar going on with the Anxiety making it worse and creating some symptoms on its own. I would suggest you ask your PCP to prescibe a short course of Xanax for a week or so, and see how you feel once the Anxiety is nixed.
Jon
I'm not a doctor, I just have MS and to me it doesn't sound typical (your symptoms) of MS. You may have something like Chronic Fatigue Syndrome or similar going on with the Anxiety making it worse and creating some symptoms on its own. I would suggest you ask your PCP to prescibe a short course of Xanax for a week or so, and see how you feel once the Anxiety is nixed.
Jon
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