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Please Help-Still Need to Worry about MS or no??
I am sorry that this is such a long message but I am hoping that there is someone out here who may have some valuable insight or advice to give me. Thank you for reading!
I am a 20 yo female. My medical history, given as briefly as possible is; dx with POTS at age 10. dx with brain tumor (low grade astrocytoma) at age 13, found incidentally. Had craniotomy for full resection of tumor (left frontoparietal region). 2 follow up surgeries, 1 for adjustment to titanium clips that held skull piece in place and the 2nd was 3 years later at age 16 to remove all hardware from craniotomy and replace it with silk stitching. I had status epilepticus 1 wk after surgery and have some occ complex partial-like seizures on occasion. I have also had chronic headaches for years now since the surgery.
My current symptoms are as follows. Mid oct of '11-developed resistant hypertension and worsened tachycardia (was getting it all the time), then somewhere around beg of Nov I realised I was getting muscle twitches throughout my body. Then at the start of December I started having trouble with sensory things-I had a feeling of general decreased sensation of my right leg, which gradually included my hand. I began experiencing transient tingling and numbness of the extremities of both sides of my body. I also had a spell of overwhelming lightheadedness, after which I tried to walk and did so drunkenly-like. Since then I have been unable to stand with my feet together without starting to tip over to the left/am romberg pos. At this point, I have transient symptoms of what feels like waves of tingling (similar to a chill) throughout an area of my body, noticed my hands/feet (also arms/legs though not as intensely) feel like they're starting to fall asleep when doing things which shouldn't provoke it. I have tried to pay hard attn and do notice that when its in my arms and hands it seems like it's mostly the ulnar nerves. Am still tachycardia all the time beyond what you'd expect with POTS, BP fluctuates all over the place from highs to lows.
When being worked up for this, I also went back and reviewed earlier complaints. In July I had an episode of tingling and numbness and a very weird experience where I was unable to properly use my right hand. I could move it, just not where and how I wanted, if that makes sense. The whole thing lasted 2 hours. At the end of September/late Oct, I had some trouble seeing/focusing properly that lasted ~hr tops, during which time I had tingling in my left hand from my finger tips to my elbow, followed by numbness which went away after 5/6mins.
I have had an MRI of my brain, MRI of c-spine, EMG and NCS. Bloodwork for ANA, ESR, B-12 deficiency, lyme, the works. All negative...MRIs (both with contrast) showed no lesions (my brain MRI isn't normal because of the surgery/tumor, but there is nothing new on it either). I also had a very thorough cardio workup. I've seen the same neurologist for 7 years, he specialises in migraine/headache & has been great helping me with all my post-op problems. That is, until now. It has been concluded that none of this is related to my brain tumor/surgery. It has been agreed that I have developed more widespread autonomic dysfunction. Have been put back on a beta blocker to try to help. My neuro cannot provide me with a diagnosis, only says that he doesn't think it's any serious since all of the tests I mentioned were negative. Tried to suggest maybe the paresthesias were like migraine auras without the migraine but then said that this would occur with vision probs, which I don't have...I felt like at this point he was just trying to apply his area of focus.
I have read posts by some who said they have been dx'd w/o lesions on MRI, etc. Has anyone had a similar case to mine and ended up diagnosed? Or at this point should I just try to move on and hope for the best? It is very distressing for me to not have any explanation for anything..... THANKS!
I am a 20 yo female. My medical history, given as briefly as possible is; dx with POTS at age 10. dx with brain tumor (low grade astrocytoma) at age 13, found incidentally. Had craniotomy for full resection of tumor (left frontoparietal region). 2 follow up surgeries, 1 for adjustment to titanium clips that held skull piece in place and the 2nd was 3 years later at age 16 to remove all hardware from craniotomy and replace it with silk stitching. I had status epilepticus 1 wk after surgery and have some occ complex partial-like seizures on occasion. I have also had chronic headaches for years now since the surgery.
My current symptoms are as follows. Mid oct of '11-developed resistant hypertension and worsened tachycardia (was getting it all the time), then somewhere around beg of Nov I realised I was getting muscle twitches throughout my body. Then at the start of December I started having trouble with sensory things-I had a feeling of general decreased sensation of my right leg, which gradually included my hand. I began experiencing transient tingling and numbness of the extremities of both sides of my body. I also had a spell of overwhelming lightheadedness, after which I tried to walk and did so drunkenly-like. Since then I have been unable to stand with my feet together without starting to tip over to the left/am romberg pos. At this point, I have transient symptoms of what feels like waves of tingling (similar to a chill) throughout an area of my body, noticed my hands/feet (also arms/legs though not as intensely) feel like they're starting to fall asleep when doing things which shouldn't provoke it. I have tried to pay hard attn and do notice that when its in my arms and hands it seems like it's mostly the ulnar nerves. Am still tachycardia all the time beyond what you'd expect with POTS, BP fluctuates all over the place from highs to lows.
When being worked up for this, I also went back and reviewed earlier complaints. In July I had an episode of tingling and numbness and a very weird experience where I was unable to properly use my right hand. I could move it, just not where and how I wanted, if that makes sense. The whole thing lasted 2 hours. At the end of September/late Oct, I had some trouble seeing/focusing properly that lasted ~hr tops, during which time I had tingling in my left hand from my finger tips to my elbow, followed by numbness which went away after 5/6mins.
I have had an MRI of my brain, MRI of c-spine, EMG and NCS. Bloodwork for ANA, ESR, B-12 deficiency, lyme, the works. All negative...MRIs (both with contrast) showed no lesions (my brain MRI isn't normal because of the surgery/tumor, but there is nothing new on it either). I also had a very thorough cardio workup. I've seen the same neurologist for 7 years, he specialises in migraine/headache & has been great helping me with all my post-op problems. That is, until now. It has been concluded that none of this is related to my brain tumor/surgery. It has been agreed that I have developed more widespread autonomic dysfunction. Have been put back on a beta blocker to try to help. My neuro cannot provide me with a diagnosis, only says that he doesn't think it's any serious since all of the tests I mentioned were negative. Tried to suggest maybe the paresthesias were like migraine auras without the migraine but then said that this would occur with vision probs, which I don't have...I felt like at this point he was just trying to apply his area of focus.
I have read posts by some who said they have been dx'd w/o lesions on MRI, etc. Has anyone had a similar case to mine and ended up diagnosed? Or at this point should I just try to move on and hope for the best? It is very distressing for me to not have any explanation for anything..... THANKS!
Hi there. Don't take any suggestions the wrong way and you could tell her feelings were genuinely in her reply. Never, never, never regret asking any question or sharing especially in this forum. Just keep pushing for answers. That's all any of us can do and to lean on one another. I pray you find answers soon. Don't give up!! God bless!!
Mindundone,
Adding on a belated welcome to you. I cannot imagine what you've had to go through with the brain surgery, and the trials that must have followed.
While I feel you by no means should consider MS as a source of your new problems (though we share some of those symptoms), you neurologist would know best what the possible cause of your problems are, based on your history. And if not, you can always ask if he feels you should get a 2nd opinion on what a course of action should be for you at this point.
Wishing you well with your journey,
-Shell
Adding on a belated welcome to you. I cannot imagine what you've had to go through with the brain surgery, and the trials that must have followed.
While I feel you by no means should consider MS as a source of your new problems (though we share some of those symptoms), you neurologist would know best what the possible cause of your problems are, based on your history. And if not, you can always ask if he feels you should get a 2nd opinion on what a course of action should be for you at this point.
Wishing you well with your journey,
-Shell
COMMUNITY LEADER
Hey Sarah,
Everythings sweet here too, we're all adults so any misunderstanding are easily worked out, new or old cyber friendships should be totally unaffected, so please forget about it.
I am truely sorry because i didn't mean to upset you, it took me hours to write and at the end my head was starting to loose the plot, I'm still so sorry. I soooooooooo so understand the why of it though because as Mary kindly mentioned the fact that many of us have had to do the psychological assessments merry-go-round, I just happen to be one from that club lol so i really do understand.
Anyway, I just wanted to let you know I really appreciate your understanding!
Cheers............JJ
Everythings sweet here too, we're all adults so any misunderstanding are easily worked out, new or old cyber friendships should be totally unaffected, so please forget about it.
I am truely sorry because i didn't mean to upset you, it took me hours to write and at the end my head was starting to loose the plot, I'm still so sorry. I soooooooooo so understand the why of it though because as Mary kindly mentioned the fact that many of us have had to do the psychological assessments merry-go-round, I just happen to be one from that club lol so i really do understand.
Anyway, I just wanted to let you know I really appreciate your understanding!
Cheers............JJ
Thank you for your reply and your thoughts. It was hard for me to think of everything I needed to include so as a result I couldn't address everything.
1-yes, I'm aware of the baroreeceptor failure and agree it sounds applicable, in fact it probably just is. I've certainly been looking more and more into how autonomic dysfunction can connect to my other probs and it's been very hard to find much to point me in another direction, but I certainly plan to learn more. I really just want to know WTH is going on.
2-I have had a full work up on my kidneys and adrenals. This is for 2 reasons 1-b/c another one of my symptoms is an aching, nagging pain and tightness that goes from my back and wraps around my right rib cage (which also comes and goes) and 2-to rule out adrenal abnormalities given the ANS progression. Had renal MRA, ultrasound, 24 hour urine for vma & catecholamines, aldosterone & renin, blood work, etc. So there's one thing I can be happy about, no probs there :)
Luckily I haven't gotten to that point and I don't plan to. However, when you learn that some people are told no and later dx'd, it results in my desire to consult with a specialist in the area to truly provide me with the confidence I would like to move on. Your awareness of the reality of this world further supports my comment in an earlier post-bless any and all of you who have had to have such experiences!
Thanks!! :-) ~Sara
1-yes, I'm aware of the baroreeceptor failure and agree it sounds applicable, in fact it probably just is. I've certainly been looking more and more into how autonomic dysfunction can connect to my other probs and it's been very hard to find much to point me in another direction, but I certainly plan to learn more. I really just want to know WTH is going on.
2-I have had a full work up on my kidneys and adrenals. This is for 2 reasons 1-b/c another one of my symptoms is an aching, nagging pain and tightness that goes from my back and wraps around my right rib cage (which also comes and goes) and 2-to rule out adrenal abnormalities given the ANS progression. Had renal MRA, ultrasound, 24 hour urine for vma & catecholamines, aldosterone & renin, blood work, etc. So there's one thing I can be happy about, no probs there :)
Luckily I haven't gotten to that point and I don't plan to. However, when you learn that some people are told no and later dx'd, it results in my desire to consult with a specialist in the area to truly provide me with the confidence I would like to move on. Your awareness of the reality of this world further supports my comment in an earlier post-bless any and all of you who have had to have such experiences!
Thanks!! :-) ~Sara
Glad you and JJ got things talked out while I was composing my unnecessary reply. lol
Now that you mention Syracuse......
If you decide to pursue the ANS/adrenal route, you might want to look at Cleveland Clinic Foundation in Cleveland, Ohio. They are one of (I think) only a very few places with centers devoted to the study, diagnosis and treatment of dysautonomias.
Again, good luck in your search for answers.
Mary
Now that you mention Syracuse......
If you decide to pursue the ANS/adrenal route, you might want to look at Cleveland Clinic Foundation in Cleveland, Ohio. They are one of (I think) only a very few places with centers devoted to the study, diagnosis and treatment of dysautonomias.
Again, good luck in your search for answers.
Mary
I agree that a MS diagnosis is going to be hard to come by with no sign of lesions on MRI. I do wonder if your POTS diagnosis isn't the more significant part of the history you share. You might find your answers by further investigation into the ANS as dysfunction there has a wide range of symptomatology.
You probably already know that one feature of POTS can be baroreceptor failure. That could contribute to the wide fluctuations in your BP. Have your docs ever considered adrenal dysfunction (maybe even adrenal fatigue) as a factor?
In that setting, reactive responses can tie into ANS dysfunction. There is a state I have heard referred to as 'wired-and-tired' that describes really well the chaos it would feel like to have poorly controlled adrenal function.
I don't know that this would explain ALL your symptoms. You might not even find it works to explain a majority. I do think it would be worth some basic research time though before you dive too deeply into the MS experience.
MS always seems likely because it is capable of causing such a wide variety of symptoms. Unfortunately, there isn't always a lot to go on to differentiate MS from the many other diseases with similar presentations.
Please try not to be overly offended by the psychogenic suggestion. Most all of us here have had to face that possibility at one point or another along the diagnostic journey. If you pursue a MS diagnosis without radiographic evidence the issue is sure to surface again. You might as well be prepared.
I'll warn you now - mighty protests often translate into increased doubts for physicians. Shouldn't. Just does. Many here have submitted to neuropsych exams to assure themselves and their physicians that mental and emotional health are intact. Docs don't always turn into believers. I understand your reaction and believe you know when your body isn't behaving itself. I'm just sayin' what happens out there in MS MD world.
Hope you find your answers and keep sharing with us here as you do.
Mary
You probably already know that one feature of POTS can be baroreceptor failure. That could contribute to the wide fluctuations in your BP. Have your docs ever considered adrenal dysfunction (maybe even adrenal fatigue) as a factor?
In that setting, reactive responses can tie into ANS dysfunction. There is a state I have heard referred to as 'wired-and-tired' that describes really well the chaos it would feel like to have poorly controlled adrenal function.
I don't know that this would explain ALL your symptoms. You might not even find it works to explain a majority. I do think it would be worth some basic research time though before you dive too deeply into the MS experience.
MS always seems likely because it is capable of causing such a wide variety of symptoms. Unfortunately, there isn't always a lot to go on to differentiate MS from the many other diseases with similar presentations.
Please try not to be overly offended by the psychogenic suggestion. Most all of us here have had to face that possibility at one point or another along the diagnostic journey. If you pursue a MS diagnosis without radiographic evidence the issue is sure to surface again. You might as well be prepared.
I'll warn you now - mighty protests often translate into increased doubts for physicians. Shouldn't. Just does. Many here have submitted to neuropsych exams to assure themselves and their physicians that mental and emotional health are intact. Docs don't always turn into believers. I understand your reaction and believe you know when your body isn't behaving itself. I'm just sayin' what happens out there in MS MD world.
Hope you find your answers and keep sharing with us here as you do.
Mary
I am more than happy to sincerely apologize for my rash reaction now that you have clarified your position... I am sorry. I honestly just didn't know else one would be suggesting by linking such a thing, especially when you put that it "may or may not be an additional factor to consider" after the link. Now that you've clarified, and I'm sorry that you had to-but I do think your wording made it somewhat understandable for me to have had my initial impression, I understand better I think.
It has certainly become a very sensitive issue. I had family members suggest that there can't possible be anything actually going on if all test are negative, couple that w/ a cardio who told me he didn't buy that I was tachy all the time just b/c I was fine in his office (despite every other doc knowing it's happening) and combine the 2 and you get the state I've reached now. I honestly have to admire many of the people on here for not going crazy while trying to be dx'd.
I found a guy in Syracuse (an hr and change from where I am currently) who specializes in MS and I am thinking about going to him. I think such a specialist may help me for 2 reasons; 1-once he says MS is an absolute no, I can honestly feel a bit better rather than unsure and 2-perhaps he may have an idea of what else could be going on in seeing someone with such symptoms and seeing more patients with such, etc.
I thank you for clarifying your position & I apologize again...I hope this won't affect any interaction we may have in the future!
It has certainly become a very sensitive issue. I had family members suggest that there can't possible be anything actually going on if all test are negative, couple that w/ a cardio who told me he didn't buy that I was tachy all the time just b/c I was fine in his office (despite every other doc knowing it's happening) and combine the 2 and you get the state I've reached now. I honestly have to admire many of the people on here for not going crazy while trying to be dx'd.
I found a guy in Syracuse (an hr and change from where I am currently) who specializes in MS and I am thinking about going to him. I think such a specialist may help me for 2 reasons; 1-once he says MS is an absolute no, I can honestly feel a bit better rather than unsure and 2-perhaps he may have an idea of what else could be going on in seeing someone with such symptoms and seeing more patients with such, etc.
I thank you for clarifying your position & I apologize again...I hope this won't affect any interaction we may have in the future!
COMMUNITY LEADER
WHOOOOW slow down a bit please!
There was never any intent to give offense or even imply your sx were psychological! I would of thought everything else I said would of given you some idea of my concern and attempt to be helpful.
My 'exact' motive was simply that as a med student, I thought you'd find it interesting, NOT that I thought it was your problem. If you knew my history you'd REALLY understand that what your suggesting I meant, is incorrect.
I promise you, I was NOT making a judgement call that you had a psychological issue, sorry but you are totally mistaken! I still, whole heartedly appologise because the wording could of been a lot better, more clear. I really didn't expect your reaction, in hindsight I can only assume its a sensitive subject, I can almost feel how annoyed you've become, for that I am truely regrettful!
Please take a step back for a moment, ask your self, what the likelyhood is of someone spending hours writing their reply, with the intent of offending and upsetting you? I imagine there are people out there that would but I AM NOT ONE OF THEM!
Peace..............JJ
There was never any intent to give offense or even imply your sx were psychological! I would of thought everything else I said would of given you some idea of my concern and attempt to be helpful.
My 'exact' motive was simply that as a med student, I thought you'd find it interesting, NOT that I thought it was your problem. If you knew my history you'd REALLY understand that what your suggesting I meant, is incorrect.
I promise you, I was NOT making a judgement call that you had a psychological issue, sorry but you are totally mistaken! I still, whole heartedly appologise because the wording could of been a lot better, more clear. I really didn't expect your reaction, in hindsight I can only assume its a sensitive subject, I can almost feel how annoyed you've become, for that I am truely regrettful!
Please take a step back for a moment, ask your self, what the likelyhood is of someone spending hours writing their reply, with the intent of offending and upsetting you? I imagine there are people out there that would but I AM NOT ONE OF THEM!
Peace..............JJ
EEG has ruled out any new seizure activity concurrent with new symptoms. My neurologist is migraine/headache specialist but I don't suffer from migraines-they're bad headaches from the craniotomies. Nothing about them are migraine-like and my neuro has stated this in the past. Current neuro, neurosurgeon and oncologist who monitors MRIs all agree it is not related to surgery because of the fact that symptoms occur on both side of brain...and the last two deal with peds brain tumor patients into adulthood.
Not sure how to not take your last comment the wrong way. I'm not a medical student. Nor have I learned anything about any of this to suddenly make me think I have it.It's not like I read about it and suddenly developed symptoms. My coursework tends to be molecular-based only. MS was brought up as a possibility/first mentioned by the neuro himself, then said once there are no lesions, they'll never show up so MS cannot be had in a case where none are found on first scanning.
I do appreciate your feedback of course and will certainly look into some of what you have said. I still, however find your last suggestion offensive, as it essentially suggest a possibility of being a hypochondriac. I've certainly had enough real situations to not want to believe I have any sort of long-term problem, but I get fearful like anyone else with undiagnosed problems. Almost makes me regret sharing anything about my education choice in fear of it being used in a judgement call in a reply. Thanks though.
Not sure how to not take your last comment the wrong way. I'm not a medical student. Nor have I learned anything about any of this to suddenly make me think I have it.It's not like I read about it and suddenly developed symptoms. My coursework tends to be molecular-based only. MS was brought up as a possibility/first mentioned by the neuro himself, then said once there are no lesions, they'll never show up so MS cannot be had in a case where none are found on first scanning.
I do appreciate your feedback of course and will certainly look into some of what you have said. I still, however find your last suggestion offensive, as it essentially suggest a possibility of being a hypochondriac. I've certainly had enough real situations to not want to believe I have any sort of long-term problem, but I get fearful like anyone else with undiagnosed problems. Almost makes me regret sharing anything about my education choice in fear of it being used in a judgement call in a reply. Thanks though.
COMMUNITY LEADER
Hi and welcome to our little corner of the web, you might like to look at our health pages for information too. You'll notice at the right of your screen a box called 'most viewed health pages', click on 'how can a person with MS have a negative MRI' to get a comprehensive view on this.
I noticed a few things, you actually have a very complicated neuro history, which would make getting an MS dx without any brain and or spinal lesions, next to impossible. To be honest, the odds of it being MS without any lesions or clinical signs and your neuro history, makes it a bit unlikely.
I would think the brain sugery is still a major player in what you are experiencing. I'm not sure if I missed it but if you've had "complex partial-like seizures" in the past and still experience "migraines", it makes me wonder if epilepsy was fully investigated.
Autonomatic dysfunction is something i'd recommend you fully research and medhelp has a dedicated forum you might like to join too.
http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266
Personally i'd be getting a second opinion, preferably with a neuro who specialises in brain tumors. My thinking is that everything related to post surgery sx and long term side affects, would be something they deal with everyday and they'd be better equiped to handle your current situation.
Your doing pre-med neuroscience, please dont take this the wrong way but its not uncommon for med students in the early years, to experience a psychological reaction. Its called 'medical student syndrome' for a simple explanation see:
http://psychology.wikia.com/wiki/Medical_student_syndrome
It may or may not be an additional factor to consider whilst your trying to find answers, at the very least i'm sure you'll find it interesting. :-)
Cheers..........JJ
I noticed a few things, you actually have a very complicated neuro history, which would make getting an MS dx without any brain and or spinal lesions, next to impossible. To be honest, the odds of it being MS without any lesions or clinical signs and your neuro history, makes it a bit unlikely.
I would think the brain sugery is still a major player in what you are experiencing. I'm not sure if I missed it but if you've had "complex partial-like seizures" in the past and still experience "migraines", it makes me wonder if epilepsy was fully investigated.
Autonomatic dysfunction is something i'd recommend you fully research and medhelp has a dedicated forum you might like to join too.
http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266
Personally i'd be getting a second opinion, preferably with a neuro who specialises in brain tumors. My thinking is that everything related to post surgery sx and long term side affects, would be something they deal with everyday and they'd be better equiped to handle your current situation.
Your doing pre-med neuroscience, please dont take this the wrong way but its not uncommon for med students in the early years, to experience a psychological reaction. Its called 'medical student syndrome' for a simple explanation see:
http://psychology.wikia.com/wiki/Medical_student_syndrome
It may or may not be an additional factor to consider whilst your trying to find answers, at the very least i'm sure you'll find it interesting. :-)
Cheers..........JJ
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