Aa
MS symptoms?
Two parter list here. This is a repeat in a different forum, so sorry for being redundant.
Part I
So it's been a crazy three months for myself:
38 years old, male, 180 lbs., 6’ 2”
Symptoms (major -- or what I consider bothers me the most): Palpitations, abdominal pain, back pain (lower, sometimes just below ribs), difficulty sleeping on my side sometimes, numbness/tingling in legs and sometimes in fingers and face (both sides), chest pain, joint pain (changes), fatigue
Symptoms (minor): Low-grade headaches, occasional night sweats, changing bowel movements, indigestion, frequent urination, chills, hot "feeling" on skin (no fever), giant papilliary conjunctivitis, epididimititis, flushing, lightheadedness, vision changes (comes and goes), throbbing in left leg (back thigh, can be sharp), ringing ears, possible TMJ (at least some jaw pain), swollen submandibular glands (they’ve been that way for years, but it seems the right side has increased a little mote lately)
*Note on the symtoms, they are over the range of three months. Lately, a lot of the symptoms has subsided or lessened.
Doctors seen: Primary, ER and urgent care docs, cardiologist, urologist, neurologist, gastroenterologist, eyes-ears-nose doctor, alternative medicine
Tests: Blood work (numerous times), chest X-ray, chest CT, echo/stress, holter monitor, head MRI, urine samples, unltrasound on thyroid, heart cath, upper GI, lumbar x-ray, abdomen CT
Findings: Low potassium (back up), low vitamin D (abnormally according to primary), moderate acid reflux in esophagus, mild gastritis in stomach, kidney cysts (one in each kidney), 5 mm non-calcified non-fatty nodule in right lung, high bilirubin
Meds: Inderal 40 mg (but now going with 20 mg half-tablets), Mirtazapine 15 mg, Protonix 40 mg, Pataday and Alrex eyedrops
Part I
So it's been a crazy three months for myself:
38 years old, male, 180 lbs., 6’ 2”
Symptoms (major -- or what I consider bothers me the most): Palpitations, abdominal pain, back pain (lower, sometimes just below ribs), difficulty sleeping on my side sometimes, numbness/tingling in legs and sometimes in fingers and face (both sides), chest pain, joint pain (changes), fatigue
Symptoms (minor): Low-grade headaches, occasional night sweats, changing bowel movements, indigestion, frequent urination, chills, hot "feeling" on skin (no fever), giant papilliary conjunctivitis, epididimititis, flushing, lightheadedness, vision changes (comes and goes), throbbing in left leg (back thigh, can be sharp), ringing ears, possible TMJ (at least some jaw pain), swollen submandibular glands (they’ve been that way for years, but it seems the right side has increased a little mote lately)
*Note on the symtoms, they are over the range of three months. Lately, a lot of the symptoms has subsided or lessened.
Doctors seen: Primary, ER and urgent care docs, cardiologist, urologist, neurologist, gastroenterologist, eyes-ears-nose doctor, alternative medicine
Tests: Blood work (numerous times), chest X-ray, chest CT, echo/stress, holter monitor, head MRI, urine samples, unltrasound on thyroid, heart cath, upper GI, lumbar x-ray, abdomen CT
Findings: Low potassium (back up), low vitamin D (abnormally according to primary), moderate acid reflux in esophagus, mild gastritis in stomach, kidney cysts (one in each kidney), 5 mm non-calcified non-fatty nodule in right lung, high bilirubin
Meds: Inderal 40 mg (but now going with 20 mg half-tablets), Mirtazapine 15 mg, Protonix 40 mg, Pataday and Alrex eyedrops
Wow. Thanks for taking the time and effort to type all of that up. It's nice to see a medical community like this out on the web that is willing to offer some support and advice. Not to mention it's seems like a lot of great people who don't deserve the stuff that they are dealing with.
Lyme disease is on the list of what I'm going to ask next. The rheumatologist I'm seeing on Tuesday is also classified as an infectious diseases expert, so we'll see how it goes.
I live out in Colorado so Lyme disease is fairly uncommon in these parts. Not to say it can't happen though and I'm sure just like West Nile did, Lyme disease is probably going to make it's way across all of the states. I was in Alabama late last year, so maybe I picked up something then. I just don't recall becoming ill between then and this episode I'm having. I also don't recall having a rash or bite mark but it appears not all Lyme victims have it.
The night sweats are fairly infrequent, maybe once a week at the most. I'm sure some of them were anxiety-driven. The chills and flushing don't happen too often either. Really no fever I can recall either other than sometimes my skin is hot to the touch.
The ears, nose, throat doc (real nice guy) did suggest I had a recent bout with mono. He has been the only one to say that and I assume he was looking at the EBV panel. I don't recall having any bouts of mono, but he seemed to think something kicked around in my system a few months back. You're right, I did not have the "classic case of mono".
Three doctors (primary, urgent care, and gastro) all downplayed the bilirubin because all my other liver functions checked out okay. The gastro doc said lots of people have a high bilirubin, in her opinion. I think my numbers were just past the threshold so maybe it's just common for my body. She also said lots of people were low on vitamin D, but I was a little lower than normal. I'm not sure what that exact value was.
I was provided a bunch of Cymbalta (sp?) samples but I have refrained from taking them. I felt like taking them would be me admitting that I am a head case about this. Maybe the right thing to do is take them though?
Thanks for your time and insight.
Lyme disease is on the list of what I'm going to ask next. The rheumatologist I'm seeing on Tuesday is also classified as an infectious diseases expert, so we'll see how it goes.
I live out in Colorado so Lyme disease is fairly uncommon in these parts. Not to say it can't happen though and I'm sure just like West Nile did, Lyme disease is probably going to make it's way across all of the states. I was in Alabama late last year, so maybe I picked up something then. I just don't recall becoming ill between then and this episode I'm having. I also don't recall having a rash or bite mark but it appears not all Lyme victims have it.
The night sweats are fairly infrequent, maybe once a week at the most. I'm sure some of them were anxiety-driven. The chills and flushing don't happen too often either. Really no fever I can recall either other than sometimes my skin is hot to the touch.
The ears, nose, throat doc (real nice guy) did suggest I had a recent bout with mono. He has been the only one to say that and I assume he was looking at the EBV panel. I don't recall having any bouts of mono, but he seemed to think something kicked around in my system a few months back. You're right, I did not have the "classic case of mono".
Three doctors (primary, urgent care, and gastro) all downplayed the bilirubin because all my other liver functions checked out okay. The gastro doc said lots of people have a high bilirubin, in her opinion. I think my numbers were just past the threshold so maybe it's just common for my body. She also said lots of people were low on vitamin D, but I was a little lower than normal. I'm not sure what that exact value was.
I was provided a bunch of Cymbalta (sp?) samples but I have refrained from taking them. I felt like taking them would be me admitting that I am a head case about this. Maybe the right thing to do is take them though?
Thanks for your time and insight.
Hi, welcome to the forum. You've given us a lot of info here and, of course, no one can diagnose anything online, but I can discuss the things you have told us "in the context" of MS. I am Quix, one of the community leaders and a physician in a former life. I am not here officially at all and was not a neurologist.
Right off your group pf symptoms does NOT strike me as suggestive for MS at all. Does this rule it out? No. But, there are several things you mention that make me think the problem is much more in the infectious disease realm. These are chest pain, varying joint pain, night sweats, swollen glands, chills and flushing. The other things you mention can be seen with MS, but are not typical.
Right off the bat, I would like you to be tested (in at least two different labs) for Lyme Disease. It will cause ALL of the symptoms you mention plus the ones that I listed are especially common for it. You need to have a Western Blot test run, not just the ELISA that 99% of doctors get when testing for Lyme. The chest pain, random joint pains, quickly changing vision, chills and flushing, and night sweats make me think of an infection, specifically Lyme.
The lymphocyte count being low once is NOT suggestive of MS, but rather would be more in favor of a viral illness. Note that unless it was very low and persistent , it probably wouldn't mean anything.
The elevated EBV titers are very interesting, and indicate an abnormal response to EBV, or a recent (few months ago) infection). It would be long enough that the early antibodies the IgM and the Early IgG antibody have already subsided. I wonder if all this could be the result of an EBV infection that you have not yet cleared. In fact, as I think about it, that makes the most sense. On that note, I would definitely recommend an Infectious Disease evaluation. EBV does play around with the immune system, and can affect every organ system in the body. It can also cause lasting fatigue. I gather from your desciption that you did not have a classic "mononucleosis" illness at the beginning of all this (fever, nasty, sore throat, swollen glands, headache, sever fatigue and hepatitis).
Speaking of hepatitis, you NEED to find out why your bilirubin is high. How high is it? EBV almost always causes an hepatitis, though it is often sub-clinical - meaning not severe enough to cause jaundice.
Now, when one is feeling ill from an unknown assault on the body their anxiety level always skyrockets. Of course you are anxious! If, on top of this, you have an underlying anxiety problem, things will be worse. Yes, anxiety tends to magnify many symptoms. And perhaps, there are symptoms you have that can be laid to anxiety. (Palpitations is one of the classic anxiety symptoms)
It sounds like, for the most part, the doctors have taken you seriously and done a good work up. I'm glad. I do not feel what you have told us is all anxiety. And so what if anxiety is playing a role? That is not unusual. If you feel that you are having a large amount of worry, anxiety and stress (even if it is BECAUSE of these symptoms), then I would advise you to get that treated. That way you can see what effect that has on the symptoms and remove the suspicion from the doctors' minds.
Overall, I would still place my bets on an infection. After writing all of this out (which always helps organize my thoughts) I would head to an Infectious Disease specialist for an evaluation of the possiblility of an EVB infection beginning about three months ago, and to have Lyme Disease ruled out.
I still think MS is unlikely, but it is certainly not impossible.
Quix
Right off your group pf symptoms does NOT strike me as suggestive for MS at all. Does this rule it out? No. But, there are several things you mention that make me think the problem is much more in the infectious disease realm. These are chest pain, varying joint pain, night sweats, swollen glands, chills and flushing. The other things you mention can be seen with MS, but are not typical.
Right off the bat, I would like you to be tested (in at least two different labs) for Lyme Disease. It will cause ALL of the symptoms you mention plus the ones that I listed are especially common for it. You need to have a Western Blot test run, not just the ELISA that 99% of doctors get when testing for Lyme. The chest pain, random joint pains, quickly changing vision, chills and flushing, and night sweats make me think of an infection, specifically Lyme.
The lymphocyte count being low once is NOT suggestive of MS, but rather would be more in favor of a viral illness. Note that unless it was very low and persistent , it probably wouldn't mean anything.
The elevated EBV titers are very interesting, and indicate an abnormal response to EBV, or a recent (few months ago) infection). It would be long enough that the early antibodies the IgM and the Early IgG antibody have already subsided. I wonder if all this could be the result of an EBV infection that you have not yet cleared. In fact, as I think about it, that makes the most sense. On that note, I would definitely recommend an Infectious Disease evaluation. EBV does play around with the immune system, and can affect every organ system in the body. It can also cause lasting fatigue. I gather from your desciption that you did not have a classic "mononucleosis" illness at the beginning of all this (fever, nasty, sore throat, swollen glands, headache, sever fatigue and hepatitis).
Speaking of hepatitis, you NEED to find out why your bilirubin is high. How high is it? EBV almost always causes an hepatitis, though it is often sub-clinical - meaning not severe enough to cause jaundice.
Now, when one is feeling ill from an unknown assault on the body their anxiety level always skyrockets. Of course you are anxious! If, on top of this, you have an underlying anxiety problem, things will be worse. Yes, anxiety tends to magnify many symptoms. And perhaps, there are symptoms you have that can be laid to anxiety. (Palpitations is one of the classic anxiety symptoms)
It sounds like, for the most part, the doctors have taken you seriously and done a good work up. I'm glad. I do not feel what you have told us is all anxiety. And so what if anxiety is playing a role? That is not unusual. If you feel that you are having a large amount of worry, anxiety and stress (even if it is BECAUSE of these symptoms), then I would advise you to get that treated. That way you can see what effect that has on the symptoms and remove the suspicion from the doctors' minds.
Overall, I would still place my bets on an infection. After writing all of this out (which always helps organize my thoughts) I would head to an Infectious Disease specialist for an evaluation of the possiblility of an EVB infection beginning about three months ago, and to have Lyme Disease ruled out.
I still think MS is unlikely, but it is certainly not impossible.
Quix
Thanks. The heart is fine. Have done the stress test and stress w/ echo before they did the heart cath to absolutely check the arteries. No smoking here.
Well, the real truth is that hypochondriacs get sick too!
Otto, there's no telling what exactly is wrong with you at this point. I think the reason the docs keep saying anxiety is that numbness, tingling, and palpitations can be caused by it. However, it can be caused by lots of other stuff too.
If you haven't gotten a stress test done, that would be my first step. With your chest pain, palpitations, back pain, chills, and flushing, it sounds like some sort of cardiac distress. If the arteries to your heart are clear, and your heart rate is normal, perhaps it's an irregular heartbeat - but that's just an uneducated guess.
I'm also guessing that since you say your arteries to the heart are clear, that you've had an angiogram. My hubby had a stent put in at age 37, because he had a blockage in the right anterior descending artery - what the doctor called the widowmaker. "Gee, thanks!" I told him. The angiogram revealed that he had a 90% blockage.
I'm not an anti-smoking champion, although I am an ex-smoker, but I do recommend quitting if you smoke. Any heart problems are magnified 100% if you smoke cigarettes.
But hey, before he got the angiogram, the doc was convinced it was acid reflux. May be something to consider. Maybe it's a whole bunch of stuff! Lots of people have more than one ailment to deal with.
For understanding your Epstein-Barr Virus writeup, here's a website with an explanation of the test. It's not very good, but at least it's something. I will say that there's no use looking at the numbers and trying to figure this stuff out - it's like trying to read your own MRI, and we all know how pointless that is. If they told you it was negative, I'm sure it was.
http://www.labtestsonline.org/understanding/analytes/ebv/test.html
Otto, there's no telling what exactly is wrong with you at this point. I think the reason the docs keep saying anxiety is that numbness, tingling, and palpitations can be caused by it. However, it can be caused by lots of other stuff too.
If you haven't gotten a stress test done, that would be my first step. With your chest pain, palpitations, back pain, chills, and flushing, it sounds like some sort of cardiac distress. If the arteries to your heart are clear, and your heart rate is normal, perhaps it's an irregular heartbeat - but that's just an uneducated guess.
I'm also guessing that since you say your arteries to the heart are clear, that you've had an angiogram. My hubby had a stent put in at age 37, because he had a blockage in the right anterior descending artery - what the doctor called the widowmaker. "Gee, thanks!" I told him. The angiogram revealed that he had a 90% blockage.
I'm not an anti-smoking champion, although I am an ex-smoker, but I do recommend quitting if you smoke. Any heart problems are magnified 100% if you smoke cigarettes.
But hey, before he got the angiogram, the doc was convinced it was acid reflux. May be something to consider. Maybe it's a whole bunch of stuff! Lots of people have more than one ailment to deal with.
For understanding your Epstein-Barr Virus writeup, here's a website with an explanation of the test. It's not very good, but at least it's something. I will say that there's no use looking at the numbers and trying to figure this stuff out - it's like trying to read your own MRI, and we all know how pointless that is. If they told you it was negative, I'm sure it was.
http://www.labtestsonline.org/understanding/analytes/ebv/test.html
Thanks for the kind words.
I just went and got my medical records for this year since my symptoms first started in late February. I went through all of the pages and saw a couple of curious things. I was told that my EBV panel was negative. However, I see these results:
EBV Ab VCA, IgM = 14 au/ml, range 0-99
EBV Early Ab, IgG = 229 au/ml, "H", range 0-99
EBV Ab VCA IgG = 2141 au/ml, "H", range 0-99
EBV Nuke antigen Ab, IgG = 1247 au/ml, "H", range 0-99
RA Latex Turbid. = 4.8 IU/ml, range 0-13.9
So I'm high on three EBV's are my results are negative? I don't know how to read the panel, but what's the use of ranges and being outside of them and being told your test is negative?
The other item I see, which doesn't seem to be much, is one of my CBC's had low Lymphocytes but everything else was normal. However, my most recent CBC had the Lymphocytes in an acceptable. And it sounds like high lymphocytes is when something bad might be going on. I did see on the Web that low Lymphs could be suggestive of MS.
And then peppered through my medical records for this year is "patient suffers from anxiety" or "patient suffers from stress" or "patient could have hypochondriasis and needs to stop comparing symptoms on the Internet". If the docs had been feeling like I have for the last three months, they say different.
I just went and got my medical records for this year since my symptoms first started in late February. I went through all of the pages and saw a couple of curious things. I was told that my EBV panel was negative. However, I see these results:
EBV Ab VCA, IgM = 14 au/ml, range 0-99
EBV Early Ab, IgG = 229 au/ml, "H", range 0-99
EBV Ab VCA IgG = 2141 au/ml, "H", range 0-99
EBV Nuke antigen Ab, IgG = 1247 au/ml, "H", range 0-99
RA Latex Turbid. = 4.8 IU/ml, range 0-13.9
So I'm high on three EBV's are my results are negative? I don't know how to read the panel, but what's the use of ranges and being outside of them and being told your test is negative?
The other item I see, which doesn't seem to be much, is one of my CBC's had low Lymphocytes but everything else was normal. However, my most recent CBC had the Lymphocytes in an acceptable. And it sounds like high lymphocytes is when something bad might be going on. I did see on the Web that low Lymphs could be suggestive of MS.
And then peppered through my medical records for this year is "patient suffers from anxiety" or "patient suffers from stress" or "patient could have hypochondriasis and needs to stop comparing symptoms on the Internet". If the docs had been feeling like I have for the last three months, they say different.
Hi & welcome,
Lots of people here, self included, can relate to how frightening it can be to suddenly start experiencing new sensations that you know are real, but you can't show your doctors!
It is scary and confusing! The great news is you have had enough tests done that you would know if you were in immediate danger. I know I got scared at one time that I was having a stroke or a brain tumor, and it is of course a huge relief to know that's not what is going on, right?
I know this wonderful group will all come and welcome you soon. I think you're in a good place to get information, and where it is safe to ask questions without the fear of sounding crazy.
So stop calling yourself a nut! You WILL drive yourself crazy and stress yourself out if you constantly second guess yourself and lose patience. And patience is something you'll likely need while seeking your answers.
I have no diagnosis and am not an expert, so hold tight 'til those folks come along (and they will) to help with your specific q's. In the meantime, welcome and please take good care of yourself.
Lots of people here, self included, can relate to how frightening it can be to suddenly start experiencing new sensations that you know are real, but you can't show your doctors!
It is scary and confusing! The great news is you have had enough tests done that you would know if you were in immediate danger. I know I got scared at one time that I was having a stroke or a brain tumor, and it is of course a huge relief to know that's not what is going on, right?
I know this wonderful group will all come and welcome you soon. I think you're in a good place to get information, and where it is safe to ask questions without the fear of sounding crazy.
So stop calling yourself a nut! You WILL drive yourself crazy and stress yourself out if you constantly second guess yourself and lose patience. And patience is something you'll likely need while seeking your answers.
I have no diagnosis and am not an expert, so hold tight 'til those folks come along (and they will) to help with your specific q's. In the meantime, welcome and please take good care of yourself.
So along with the bunch of symptoms that MS can cause, is neck pain/discomfort one of them? This week for me has been some neck pain, not excrutiating, just mild to maybe moderate at worst. Along with the discomfort is the sensation of a throbbing vein in the side of the neck. This has been more on my right side, but sometimes on the left.
And with the neck pain, the other main symptom this week has been the constant numbness/tingling in my right foot and a little bit on the left side. And then a burning heel on my right side.
By the way, hello everyone. It's been interesting to hear everyone's cases, not in a good way, but in a way to know that I now don't feel I'm crazy (like I think my primary doc does).
And with the neck pain, the other main symptom this week has been the constant numbness/tingling in my right foot and a little bit on the left side. And then a burning heel on my right side.
By the way, hello everyone. It's been interesting to hear everyone's cases, not in a good way, but in a way to know that I now don't feel I'm crazy (like I think my primary doc does).
Part II
Supplements / Vitamins: Potassium 100 mg, Vitamin D 2000 IU, multi-vitamin, herbal tinctures (adrenal glands, thyroid, immune, lymph/detox, kidney/bladder)
Negatives: On just about everything it seems. Heart is fine, arteries to the heart are clear, blood work checks out fine, none of the major autoimmune diseases, thyroid is fine, no concerns about gland in throat. No lupus, rheumatoid arthritis, or celiac disease. Vitamin B level is fine.
Conclusion: So I’m going nuts, right? Stress and anxiety and hypochondriac? The doctors seem to state stress and anxiety. I can agree that stress led to some of the symptoms, but I know my body well enough that something happened to it. The only doctor that has seemed to help is the alternative medicine fellow. His findings so far were a “virus” in my system and a staph infection. Honestly, his tinctures have seemed to help the most out of everything done for me so far. I don't want to be one of those Health channel medical shows where it took years to find out what was ailing me.
I’m not convinced I’m past whatever it is. I would like another opinion but I’m not sure who to go see. Another primary? An endocrinologist? My insurance allows it, but the endocrinology department wants a referral from my primary (who probably thinks I’m nuts by now). I have also thought about a doctor who specializes in chronic “diseases” like CFS and fibromyalgia. Maybe a rheumatologist? I'm seeing one next Tuesday.
Any suggestions? Any of the above findings I should follow up on? I would like to think that the gamut has been run on me that nothing serious has been overlooked and maybe just something that is chronically minor. I have actually been feeling better lately with less fatigue, so I hope that would mean it’s unlikely something serious is going on (?) Is bringing up MS to a rheumy a good idea? Thanks in advance.
Supplements / Vitamins: Potassium 100 mg, Vitamin D 2000 IU, multi-vitamin, herbal tinctures (adrenal glands, thyroid, immune, lymph/detox, kidney/bladder)
Negatives: On just about everything it seems. Heart is fine, arteries to the heart are clear, blood work checks out fine, none of the major autoimmune diseases, thyroid is fine, no concerns about gland in throat. No lupus, rheumatoid arthritis, or celiac disease. Vitamin B level is fine.
Conclusion: So I’m going nuts, right? Stress and anxiety and hypochondriac? The doctors seem to state stress and anxiety. I can agree that stress led to some of the symptoms, but I know my body well enough that something happened to it. The only doctor that has seemed to help is the alternative medicine fellow. His findings so far were a “virus” in my system and a staph infection. Honestly, his tinctures have seemed to help the most out of everything done for me so far. I don't want to be one of those Health channel medical shows where it took years to find out what was ailing me.
I’m not convinced I’m past whatever it is. I would like another opinion but I’m not sure who to go see. Another primary? An endocrinologist? My insurance allows it, but the endocrinology department wants a referral from my primary (who probably thinks I’m nuts by now). I have also thought about a doctor who specializes in chronic “diseases” like CFS and fibromyalgia. Maybe a rheumatologist? I'm seeing one next Tuesday.
Any suggestions? Any of the above findings I should follow up on? I would like to think that the gamut has been run on me that nothing serious has been overlooked and maybe just something that is chronically minor. I have actually been feeling better lately with less fatigue, so I hope that would mean it’s unlikely something serious is going on (?) Is bringing up MS to a rheumy a good idea? Thanks in advance.
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