Aa
Can I really exclude MS?
I had another brain MRI, this time on a 3T and it came back completely normal. I, however, reacted to the results by breaking down in tears. Utterly frustrated. How can all my test results me absolutely normal when my symptoms correlate so well with a MS diagnosis?
To recap: May 2014, I stood up and completely collapsed-no feeling in my legs. Immediately after that , I experienced dizziness, and have been dealing with that every day ever since. Diagnosed with a 25% vestibular deficit -no one can tell me what assaulted my vestibular system and has left me with permanent chronic damage.
These are the symptoms I've been dealing with intermittently for the past 17 months, some more constant than others: Left leg weakness, spasticity, left eye pain, left eye blurriness, trouble finding words, mixing up words, extreme fatigue, weakness, feet go numb after walking for an extended period of time, exercise intolerance (used to be a runner, can't barely manage 15 minutes on treadmill, left hand finger tremor (only 2xs), stiff neck and pain/feels hot, overall slow down of system (feel like I'm going in slow motion), dizziness, and I'm sure I'm forgetting things.
Findings: hyper reflex on the left side-leg, 25% vestibular deficit, elevated TPO antibodies, positive ELISA (negative Western Blot), MTHFR mutation, low b12 and low iron (have since been corrected)
Tests: Normal EMG, Normal Somatosensory Evoked Potential, 2 Normal Spine MRIs, 2 Normal Brain MRIs, Normal bloodwork ruling EVERYTHING else out.
Seen by 3 MS specialists, a movement disorder specialist, a general neurologist, PT, Chiropractor, Functional Nutritionist, Internal Medicine Doctor, Endocronologist, Infectious Disease.
SO...where does that leave me? Forever in limbo? What are the chances that 1 year, 3 years, 5 years down the line I will be back at this site with a confirmed diagnosis? I'm exhausted, frustrated and without a diagnosis of anything to rally around and fight "it" with a game plan on how to get better, to return to my "old" self.
Can I really say it is not MS? Have others been in the same situation and then later been diagnosed?
Feel like I'm losing my mind, but have proof (on a 3t machine none the less) that I do indeed have a brain!
Thoughts and opinions welcomed!
Thank you as always,
Karen
To recap: May 2014, I stood up and completely collapsed-no feeling in my legs. Immediately after that , I experienced dizziness, and have been dealing with that every day ever since. Diagnosed with a 25% vestibular deficit -no one can tell me what assaulted my vestibular system and has left me with permanent chronic damage.
These are the symptoms I've been dealing with intermittently for the past 17 months, some more constant than others: Left leg weakness, spasticity, left eye pain, left eye blurriness, trouble finding words, mixing up words, extreme fatigue, weakness, feet go numb after walking for an extended period of time, exercise intolerance (used to be a runner, can't barely manage 15 minutes on treadmill, left hand finger tremor (only 2xs), stiff neck and pain/feels hot, overall slow down of system (feel like I'm going in slow motion), dizziness, and I'm sure I'm forgetting things.
Findings: hyper reflex on the left side-leg, 25% vestibular deficit, elevated TPO antibodies, positive ELISA (negative Western Blot), MTHFR mutation, low b12 and low iron (have since been corrected)
Tests: Normal EMG, Normal Somatosensory Evoked Potential, 2 Normal Spine MRIs, 2 Normal Brain MRIs, Normal bloodwork ruling EVERYTHING else out.
Seen by 3 MS specialists, a movement disorder specialist, a general neurologist, PT, Chiropractor, Functional Nutritionist, Internal Medicine Doctor, Endocronologist, Infectious Disease.
SO...where does that leave me? Forever in limbo? What are the chances that 1 year, 3 years, 5 years down the line I will be back at this site with a confirmed diagnosis? I'm exhausted, frustrated and without a diagnosis of anything to rally around and fight "it" with a game plan on how to get better, to return to my "old" self.
Can I really say it is not MS? Have others been in the same situation and then later been diagnosed?
Feel like I'm losing my mind, but have proof (on a 3t machine none the less) that I do indeed have a brain!
Thoughts and opinions welcomed!
Thank you as always,
Karen
COMMUNITY LEADER
"I have to just take one day at a time" Babe, I've never known any other way :D
I also know no matter what comes my way, the 'easiest' way to travel through it, is to not look back but to make the best of it and keep moving forward....
Hugs.......JJ
I also know no matter what comes my way, the 'easiest' way to travel through it, is to not look back but to make the best of it and keep moving forward....
Hugs.......JJ
1 Comments
Very true.........
Ditto above. Challenging to have such exactitude of stark neuro symptoms yet no answers. I live that more often now and my symptoms seem to worsen with new ones to accompany.
It is perplexing to not have any visible signs on MRIS yet disabling symptoms ..... That in itself is tough to swallow.
We are here for you ..... We understand ....and undeniably empathize with you on this teeter totter of limbo land ......
It is perplexing to not have any visible signs on MRIS yet disabling symptoms ..... That in itself is tough to swallow.
We are here for you ..... We understand ....and undeniably empathize with you on this teeter totter of limbo land ......
1 Comments
Thank you!
Karen, this is all causing a lot of anguish - I understand - I don't have anything particularly intelligent to say but I know how it feels to worry and lack answers. I think the 3T being clear - assuming it was completely clear has to be good if frustrating. I understand your feelings if my own situation is a bit different. You have lots of bad stuff going on. Your mris are clear. I have relatively minimal stuff but mris show something - not yet sure what that something is. I will admit to thinking about it way too much. It is hard not to. Take care, hugs. Hug your gnomes. Gnomes know. xoxoxox
1 Comments
Thanks! I hope you can get answers soon on what is showing up on your mris and that your symptoms continue to stay minimal!!
I don't know what I'd do without my gnomes, they are true blessings! =-)
I don't know what I'd do without my gnomes, they are true blessings! =-)
Yes, I was taking the fact that no lesions have been found yet and that my symptoms have been getting worse (especially my ability to walk for any period of time) to add up to the fact that I could fall into a PPMS diagnosis. But, there really should have been something found in the brain because, although I was convinced a 3t would help find lesions on the spine, where I thought they might be hiding out due to the gait problem, hyper reflex and that I collapsed as the first "symptom"...there is still plenty of "activity" that should be explained away with brain lesions, and none were found. I should breathe easy with the fact that it has been done on a 3t machine.
I guess as this point, I have to just take one day at a time and it will all remain a mystery until one day...it is no longer a mystery and the doctors can diagnosis me. ..with whatever "this" is.
I truly want to thank each and every one who has let me ask questions, vent and commiserate. Your responses , empathy and knowledge really have made a difference during this very unsettling time.
I'm right there with you JJ, crying "uncle"...wowsers!
I guess as this point, I have to just take one day at a time and it will all remain a mystery until one day...it is no longer a mystery and the doctors can diagnosis me. ..with whatever "this" is.
I truly want to thank each and every one who has let me ask questions, vent and commiserate. Your responses , empathy and knowledge really have made a difference during this very unsettling time.
I'm right there with you JJ, crying "uncle"...wowsers!
COMMUNITY LEADER
Karen,
"To think that I could possibly be the 5% that don't ever show lesions AND have the worst, in terms of no treatment, form of MS...well, that is just downright depressing!"
I was actually left scratching my head trying to work out how you could of interpreted what i wrote as confirmation, and turn it into a negative.....be very careful babe, your headspace is 'possibly' focusing on to one rarity after another, trying to fit your missing diagnostic evidence into the possibility of it still being MS.
Remember for most of this year, you've strongly believed the reason you didn't have the MS suggestive/consistent diagnostic evidence, was because you hadn't had a 3T MRI. Thinking of the unlikely 5% idea would be the rarity that could keep MS in your headspace and make it even harder to start focusing on recovering from the dx's you know to be true by your objective evidence. The alternative idea would be 95% of MSers do have lesions, so there is a statistical higher probability that you won't have MS when there isn't.
[btw i'm pretty sure that 5% was originally based on 1.5T MRI like the Mcdonald MS criteria is, and only relating to the MSers MRI diagnostic evidence, so theoretically if a 3T is suppose to show approx 25% more lesions than the 1.5T, the reasonable assumption would be that 5% would be even lower with the 3T's now]
Still thinking about MS statistics, PPMS (10%) is technically more rare in comparison to RRMS (80%) but whilst PPMS does typically take longer to dx, there is a PPMS criteria...
"Unlike relapsing forms of MS, primary-progressive MS (PPMS) is characterized by a fairly steady, gradual change in functional ability over time — most often related to walking — without any relapses. Due to this basic difference in the disease course, different criteria are used to make an accurate diagnosis of PPMS. The criteria for a diagnosis of PPMS are:
One year of disease progression (worsening of neurological function without remission), AND
Two of the following:
A type of lesion in the brain that is recognized by experts in as being typical of MS
Two or more lesions of a similar type in the spinal cord
Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system
Meeting these criteria can sometimes take a fairly long time, particularly if the person has only recently begun to experience neurologic symptoms. Several studies have suggested that the PPMS may take two to three years longer to diagnose than relapsing-remitting MS."
http://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS/Diagnosing-Primary-Progressive-MS
"darn it, I was really hoping you would come back at me and say absolutely without a doubt I do not, nor ever could, have MS.".....truthfully, like imm i don't think you do have a neurological condition like MS, your diagnostic evidence has been consistently suggesting that MS is very unlikely but if you truly need absolutes about MS, sorry no one can ever give you or anyone that life time guarantee!
HUGS.......JJ
ps after my stupido computer crashing for the second time i've crying uncle on your list sorry!
"To think that I could possibly be the 5% that don't ever show lesions AND have the worst, in terms of no treatment, form of MS...well, that is just downright depressing!"
I was actually left scratching my head trying to work out how you could of interpreted what i wrote as confirmation, and turn it into a negative.....be very careful babe, your headspace is 'possibly' focusing on to one rarity after another, trying to fit your missing diagnostic evidence into the possibility of it still being MS.
Remember for most of this year, you've strongly believed the reason you didn't have the MS suggestive/consistent diagnostic evidence, was because you hadn't had a 3T MRI. Thinking of the unlikely 5% idea would be the rarity that could keep MS in your headspace and make it even harder to start focusing on recovering from the dx's you know to be true by your objective evidence. The alternative idea would be 95% of MSers do have lesions, so there is a statistical higher probability that you won't have MS when there isn't.
[btw i'm pretty sure that 5% was originally based on 1.5T MRI like the Mcdonald MS criteria is, and only relating to the MSers MRI diagnostic evidence, so theoretically if a 3T is suppose to show approx 25% more lesions than the 1.5T, the reasonable assumption would be that 5% would be even lower with the 3T's now]
Still thinking about MS statistics, PPMS (10%) is technically more rare in comparison to RRMS (80%) but whilst PPMS does typically take longer to dx, there is a PPMS criteria...
"Unlike relapsing forms of MS, primary-progressive MS (PPMS) is characterized by a fairly steady, gradual change in functional ability over time — most often related to walking — without any relapses. Due to this basic difference in the disease course, different criteria are used to make an accurate diagnosis of PPMS. The criteria for a diagnosis of PPMS are:
One year of disease progression (worsening of neurological function without remission), AND
Two of the following:
A type of lesion in the brain that is recognized by experts in as being typical of MS
Two or more lesions of a similar type in the spinal cord
Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system
Meeting these criteria can sometimes take a fairly long time, particularly if the person has only recently begun to experience neurologic symptoms. Several studies have suggested that the PPMS may take two to three years longer to diagnose than relapsing-remitting MS."
http://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS/Diagnosing-Primary-Progressive-MS
"darn it, I was really hoping you would come back at me and say absolutely without a doubt I do not, nor ever could, have MS.".....truthfully, like imm i don't think you do have a neurological condition like MS, your diagnostic evidence has been consistently suggesting that MS is very unlikely but if you truly need absolutes about MS, sorry no one can ever give you or anyone that life time guarantee!
HUGS.......JJ
ps after my stupido computer crashing for the second time i've crying uncle on your list sorry!
Been off here for a few days, keep strong Karen xx I know your little gnomes will bring a smile to your face even on the hardest days.
As SC says you've got some fab peeps on here who have loads of experience and good advice, sometimes it's good just to have a grumble or rant on here - can save doing it at home maybe? Just start each new day and take it as it comes, try not to be so hard on yourself, no one knows *exactly* what you're feeling mentally or physically, we'll have similar comparisons though to share.
Sending you two little fishing rods for each side of your potential smile and reeling like crazy x
:-D
Nx
As SC says you've got some fab peeps on here who have loads of experience and good advice, sometimes it's good just to have a grumble or rant on here - can save doing it at home maybe? Just start each new day and take it as it comes, try not to be so hard on yourself, no one knows *exactly* what you're feeling mentally or physically, we'll have similar comparisons though to share.
Sending you two little fishing rods for each side of your potential smile and reeling like crazy x
:-D
Nx
1 Comments
Thanks, I love the way you phrase things, I think I feel a "tug" ;-)
Karen, the only time I feel sick is when I have UTI's or kidney infections. Otherwise, it's more of a "broken" thing in episodes. Currently my leg is broken. last summer my vision. But I didn't feel "sick" during these times.
1 Comments
Thanks, no UTI so must be "something" else.
Just another note: does anyone feel sick too, is that a symptom of MS? I feel ishy sick like more than not- maybe it's stress, maybe it's a "clue" or maybe it's just part of the unknown?!
2 Comments
You aren't the only one. I've had that sick feeling also. More often than not now when performing activities that in past I was always able to achieve. Now ... I tire easier and remain exhausted for a day or two after. This is with light activity not anything strenuous. Part of the limbo of unknown ....
So strange that you have that feeling too!
Happy Birthday to your son! I hope he gets the placement at the university he most desires, exciting times!
But darn it, I was really hoping you would come back at me and say absolutely without a doubt I do not, nor ever could, have MS. To think that I could possibly be the 5% that don't ever show lesions AND have the worst, in terms of no treatment, form of MS...well, that is just downright depressing!
As always though, good advice on trying to work with what I have and strive for what I want...I will try harder, but I'm not going to lie...it's hard. Very difficult to go from completely healthy, to absolutely "unhealthy" and yet try to work back to a healthy I don't even know can be possible, because I don't know what I'm fighting against.
We actually just had a young Mom in my community pass away from MS...diagnosed at 27 and just passed away at 30. Devastating, this disease...they need to find a cure already!
But darn it, I was really hoping you would come back at me and say absolutely without a doubt I do not, nor ever could, have MS. To think that I could possibly be the 5% that don't ever show lesions AND have the worst, in terms of no treatment, form of MS...well, that is just downright depressing!
As always though, good advice on trying to work with what I have and strive for what I want...I will try harder, but I'm not going to lie...it's hard. Very difficult to go from completely healthy, to absolutely "unhealthy" and yet try to work back to a healthy I don't even know can be possible, because I don't know what I'm fighting against.
We actually just had a young Mom in my community pass away from MS...diagnosed at 27 and just passed away at 30. Devastating, this disease...they need to find a cure already!
COMMUNITY LEADER
I'm still working up with your diagnostic evidence list, my computer crashed so i'm having to starting again lol I will get back to you with it when i can.....
Something for you to consider: Lets say for arguments sake that theoretically despite the absence of MS diagnostic evidence, that your right and you do have MS, from everything you've mentioned since this began in May last year, the symptom pattern is of a continued development. A continual slow progression would be more consistent with Primary Progressive, a rapid progression is as rare as hens teeth so 'extremely' unlikely but still one of the rarest progressive types of MS.........unfortunately there isn't any disease modifying drugs for the secondary or primary progressive types of MS!
So theoretically even if you had official confirmation of a progressive form of MS to validate your way of thinking, it would 'not' actually give you a dx that's fixable, curable, temporary, or something to do that will change it's course or reversal of what's already happened, the treatments options are symptom based, physio and often additional counselling to assist with acceptance, build coping skills etc etc.
Please don't make the mistake of thinking labels have more importance than working on recovery or improvements, with the majority of conditions that cause physical disabilities, the hard work actually begins way before the diagnostic confirmation......you absolutely do not need a label that ties your issues altogether to have hope of better tomorrows, to shift your energy into doing what ever it takes to physically and mentally get the best out of you that is possible, to consciously shift your mindset, to only focus on what you absolutely know to be true and believe that if you do the work you'll reap the benefits and get beyond this moment in your life....
Tomorrow my youngest turns 18, he's just finished his final year of school exams and is awaiting his results and uni placement options.........if I believed his label was his future, he wouldn't of achieved half of what he has or be who his truly is!
If you believe you can find a way to better your tomorrows babe, believe me it can truly happen, just don't close that alternative door....
Hugs.......JJ
Something for you to consider: Lets say for arguments sake that theoretically despite the absence of MS diagnostic evidence, that your right and you do have MS, from everything you've mentioned since this began in May last year, the symptom pattern is of a continued development. A continual slow progression would be more consistent with Primary Progressive, a rapid progression is as rare as hens teeth so 'extremely' unlikely but still one of the rarest progressive types of MS.........unfortunately there isn't any disease modifying drugs for the secondary or primary progressive types of MS!
So theoretically even if you had official confirmation of a progressive form of MS to validate your way of thinking, it would 'not' actually give you a dx that's fixable, curable, temporary, or something to do that will change it's course or reversal of what's already happened, the treatments options are symptom based, physio and often additional counselling to assist with acceptance, build coping skills etc etc.
Please don't make the mistake of thinking labels have more importance than working on recovery or improvements, with the majority of conditions that cause physical disabilities, the hard work actually begins way before the diagnostic confirmation......you absolutely do not need a label that ties your issues altogether to have hope of better tomorrows, to shift your energy into doing what ever it takes to physically and mentally get the best out of you that is possible, to consciously shift your mindset, to only focus on what you absolutely know to be true and believe that if you do the work you'll reap the benefits and get beyond this moment in your life....
Tomorrow my youngest turns 18, he's just finished his final year of school exams and is awaiting his results and uni placement options.........if I believed his label was his future, he wouldn't of achieved half of what he has or be who his truly is!
If you believe you can find a way to better your tomorrows babe, believe me it can truly happen, just don't close that alternative door....
Hugs.......JJ
1 Comments
Happy Birthday to your son JJ.
From the thread thus far.......,you can understand why I stated brilliant minds are here on this forum with ongoing support providing varying ponders. When I review a thread with others chimming in with deep thought and understanding it emerges a smile to know others care. You are linked so to speak! ;-)
I can't find any tests or blood work that specifically were ordered to rule out ataxia. I would have thought the movement disorder neurologist would have been thinking along those lines, but perhaps not. Looks like maybe some blood work for genetics could be done and I will certainly ask about that at my next appointment. I do appear to have a lot more going on that doesn't necessarily fit into that arena?
I am having an endoscopy done in December for some unexplained stomach pain, nausea, and burping I have intermittently upon waking, maybe that will yield some results? I'm gluten free about 75% of the time, but understand that if I have a true problem with gluten...I would need to be off it it 100%, they will be checking for that in the endoscopy. Thanks for the suggestions, open to anything inside or outside the box that can hopefully diagnosis!
I am having an endoscopy done in December for some unexplained stomach pain, nausea, and burping I have intermittently upon waking, maybe that will yield some results? I'm gluten free about 75% of the time, but understand that if I have a true problem with gluten...I would need to be off it it 100%, they will be checking for that in the endoscopy. Thanks for the suggestions, open to anything inside or outside the box that can hopefully diagnosis!
Have the doctors ruled out any form of ataxia? Unfortunately it's often not looked into by doctors and hence diagnosis can take quite sometime.
Sometimes it's a genetic thing that just 'crops up', other times there is no apparent explanation and then slightly more rarely it's a manifestation of either Celiac or Non Celiac gluten sensitivity. It can manifest almost exactly like MS, but without the brain lesions in some cases.
Maybe something to think about since you're currently at a lose end.
Best wishes
Poppy
Sometimes it's a genetic thing that just 'crops up', other times there is no apparent explanation and then slightly more rarely it's a manifestation of either Celiac or Non Celiac gluten sensitivity. It can manifest almost exactly like MS, but without the brain lesions in some cases.
Maybe something to think about since you're currently at a lose end.
Best wishes
Poppy
I know how you feel. It's so frustrating and infuriaying to not feel like yourself... To know that something is not right... But everything comes back normal.
I too used to be big into running. Inhad hip surgery due to a congenital defect abyear ago (a year after some of my symptoms started to present)... And just have not been able to get back into it. I feel weak like I can't pick up my legs when I run and despite attempts to start slow and build up... I just can't do it.
I hbe had a couple of docs say "are we looking at MS" and if i read my symptoms on a board exam... MS would be the answer, but MRIs have been negative... All i have is some slight abnormalities on EMG.
But believe me I am not asking to be diagnosed with MS. In fact when I experience something that I feel is "off" I try to explain it away with some other explanation... Because MS is not likely. But I keep it in the navk of my mind.
So... To you I say... I share your frustrations... But don't sell yourself a diagnosis that you don't hve. I'm notnsuggesting that you give up the search for an answer... Just suggesting that you keep an open mind.
Good luck to you!
I too used to be big into running. Inhad hip surgery due to a congenital defect abyear ago (a year after some of my symptoms started to present)... And just have not been able to get back into it. I feel weak like I can't pick up my legs when I run and despite attempts to start slow and build up... I just can't do it.
I hbe had a couple of docs say "are we looking at MS" and if i read my symptoms on a board exam... MS would be the answer, but MRIs have been negative... All i have is some slight abnormalities on EMG.
But believe me I am not asking to be diagnosed with MS. In fact when I experience something that I feel is "off" I try to explain it away with some other explanation... Because MS is not likely. But I keep it in the navk of my mind.
So... To you I say... I share your frustrations... But don't sell yourself a diagnosis that you don't hve. I'm notnsuggesting that you give up the search for an answer... Just suggesting that you keep an open mind.
Good luck to you!
1 Comments
Thank you! Hip surgery sounds pretty major, I hope you are able to regain your strength as you continue to work on it. I am trying to remain open to any other possibilities and will gladly do more testing to rule something in or out, problem is...running short on what else to look at for the reason for all this. I will keep plodding along and wish you good luck as well to getting back to normal and getting answers!
Thank you immisceo, I can understand how my previous posts would allude to the fact that I'm 100% convinced I have MS. The longer this goes on, the more I've become convinced. I actually welcome a different explanation for my symptoms that are unilateral in nature and mimic a diagnosis of MS. My concern is that MS is a disease of exclusion, and I've been tested for all the mimics, there is nothing left on the table to explain what is going on. The vestibular deficit diagnosis only explains the dizziness. Would not explain any of the other symptoms. And how in the world did I get this damage?
The first GP I saw after the initial fall said this sounds like MS, but I'm not a neurologist...let's get you a referral. The MS specialist I saw after that said you have MS after taking history and exam, but wait..we need to do some more imaging. Clean MRIs, nope...you don't have it. I went in to the doctor with most of the symptoms before a MS diagnosis was even on my radar. After every blood test that came back to rule this thing or that thing out came back normal, MS was seeming to be the more logical explanation. The MRIs aren't supporting that. I do have to find peace that at this time, I remain undiagnosed. That I have these symptoms that are disrupting, at best,to my daily life and that doctors are willing to prescribe gabapentin for a pain they have no idea where it is originating from. It's all very perplexing. You go to the doctor with a broken arm, they do an x-ray, and there you go...we see the problem, let's fix it up. I've been going to the doctors for 17 months with problems and leave with no answers, and the same problems.
That old saying, when you hear hoofprints, don't think zebras....all the "zebras" have been dismissed.
The first GP I saw after the initial fall said this sounds like MS, but I'm not a neurologist...let's get you a referral. The MS specialist I saw after that said you have MS after taking history and exam, but wait..we need to do some more imaging. Clean MRIs, nope...you don't have it. I went in to the doctor with most of the symptoms before a MS diagnosis was even on my radar. After every blood test that came back to rule this thing or that thing out came back normal, MS was seeming to be the more logical explanation. The MRIs aren't supporting that. I do have to find peace that at this time, I remain undiagnosed. That I have these symptoms that are disrupting, at best,to my daily life and that doctors are willing to prescribe gabapentin for a pain they have no idea where it is originating from. It's all very perplexing. You go to the doctor with a broken arm, they do an x-ray, and there you go...we see the problem, let's fix it up. I've been going to the doctors for 17 months with problems and leave with no answers, and the same problems.
That old saying, when you hear hoofprints, don't think zebras....all the "zebras" have been dismissed.
I've just gone over all of your posting history. I think, at this time, you have far more objective evidence pointing away from MS as a possibility than towards. You have seen many neurologists and had a lot of imaging. There's not really been anything inconsistent with the diagnoses you already have such as vestibular deficit.
From your earliest posts, you seemed convinced of MS as the diagnosis. This is dangerous ground to tread. To assume a conclusion prior to proof can cause a kind of relationship to develop with an illness you may not have. Open minds serve the patient better in the early stages.
"But, in my gut and from everything I've read...I feel like this is MS."
"So, still in limbo and honestly just waiting for the doctors to validate what I feel is the certain diagnosis of MS."
"If I had a "DR." in front of my name, I swear I would diagnosis me with MS!!"
"To me, this all screams MS, especially after reading everyone else's experiences. "
"I might be trying to make a "square peg fit into a round hole" in order to make sense of all that is going on with me!"
"I feel like I'm a walking talking MS time bomb and until something catastrophic happens or something bigger/newer different happens"
"There is the 99% of me that still believes this is MS, but if it is...why is it getting so bad so quickly and yet they can't find anything on the MRI's."
"this is mind boggling to me what I'm dealing with and I just know this is MS."
"all I had to do was google it to figure it out."
All of the above contradicts the evidence of the past year and a half. This is NOT to say that you're not dealing with physical issues. This is NOT to say your life hasn't been negatively impacted. This is NOT to say your frustrations are unwarranted. But I do not think MS is the answer to your questions. In your shoes, I would retrain my focus to treating the symptoms.
From your earliest posts, you seemed convinced of MS as the diagnosis. This is dangerous ground to tread. To assume a conclusion prior to proof can cause a kind of relationship to develop with an illness you may not have. Open minds serve the patient better in the early stages.
"But, in my gut and from everything I've read...I feel like this is MS."
"So, still in limbo and honestly just waiting for the doctors to validate what I feel is the certain diagnosis of MS."
"If I had a "DR." in front of my name, I swear I would diagnosis me with MS!!"
"To me, this all screams MS, especially after reading everyone else's experiences. "
"I might be trying to make a "square peg fit into a round hole" in order to make sense of all that is going on with me!"
"I feel like I'm a walking talking MS time bomb and until something catastrophic happens or something bigger/newer different happens"
"There is the 99% of me that still believes this is MS, but if it is...why is it getting so bad so quickly and yet they can't find anything on the MRI's."
"this is mind boggling to me what I'm dealing with and I just know this is MS."
"all I had to do was google it to figure it out."
All of the above contradicts the evidence of the past year and a half. This is NOT to say that you're not dealing with physical issues. This is NOT to say your life hasn't been negatively impacted. This is NOT to say your frustrations are unwarranted. But I do not think MS is the answer to your questions. In your shoes, I would retrain my focus to treating the symptoms.
COMMUNITY LEADER
Karen *Hugs*
I probably have a totally different perspective, so fair warning this may really challenge your thinking.....whilst i really understand your frustration, i actually think it's positively great news to hear your 3T brain MRI is normal!
Have you really truly considered the 'symptoms' you've been dealing with, don't actually correlate the same as the symptoms and clinical signs when caused by neurological conditions like MS?
I would suggest you consider altering your thoughts about MS for a moment and just focus on 'all' your normal and abnormal diagnostic evidence.......keeping in mind that when there is continually absent (consistent or suggestive) MS related diagnostic evidence, with the addition of increasing symptoms without the corresponding neurologically related clinical evidence, over a significant enough period of time, generally being the neurological red flags....
It makes a lot of sense to be seriously considering that your actual diagnostic evidence has been consistently suggesting that neurological conditions like MS, would not be your 'most likely' medical explanation.....theoretically then if diagnostically MS is realistically very low on your list of potentials, whilst it can't totally rule out neurological conditions like MS completely, it would definitely be suggesting MS as being an unlikely explanation and probably time to re-evaluate any other potential causation for the hard evidence you do actually have..
It's late over here so tomorrow I'll go back to the beginning and worked through your posting history to find what you've mentioned being diagnosed with and why it was changed, what abnormal evidence no matter what it was and come up with something, lol i'm sure you can come up with a better list but hopefully starting back from the beginning will 'help' find a clue or two lol or at least an alternative direction for you to consider.....
Hugs........JJ
I probably have a totally different perspective, so fair warning this may really challenge your thinking.....whilst i really understand your frustration, i actually think it's positively great news to hear your 3T brain MRI is normal!
Have you really truly considered the 'symptoms' you've been dealing with, don't actually correlate the same as the symptoms and clinical signs when caused by neurological conditions like MS?
I would suggest you consider altering your thoughts about MS for a moment and just focus on 'all' your normal and abnormal diagnostic evidence.......keeping in mind that when there is continually absent (consistent or suggestive) MS related diagnostic evidence, with the addition of increasing symptoms without the corresponding neurologically related clinical evidence, over a significant enough period of time, generally being the neurological red flags....
It makes a lot of sense to be seriously considering that your actual diagnostic evidence has been consistently suggesting that neurological conditions like MS, would not be your 'most likely' medical explanation.....theoretically then if diagnostically MS is realistically very low on your list of potentials, whilst it can't totally rule out neurological conditions like MS completely, it would definitely be suggesting MS as being an unlikely explanation and probably time to re-evaluate any other potential causation for the hard evidence you do actually have..
It's late over here so tomorrow I'll go back to the beginning and worked through your posting history to find what you've mentioned being diagnosed with and why it was changed, what abnormal evidence no matter what it was and come up with something, lol i'm sure you can come up with a better list but hopefully starting back from the beginning will 'help' find a clue or two lol or at least an alternative direction for you to consider.....
Hugs........JJ
2 Comments
Thank you, and yes...it really is great news that the mri is normal, really good news! I don't know what other condition could be causing symptoms on only one side of my body? Even Lyme, which is the great mimic to MS usually causes symptoms on both sides. That really is the only other thing I think it quite possibly could be. I'm on a wait list to see a LLMD to rule out co-infections...a waiting list a mile long. Thanks for offering to dig for another reason for all of this. I really have researched any other possibility and either it doesn't fit with my symptoms, or it has already been ruled out by the doctors. At a loss..permanent resident of "limbo land"
I know EXACTLY how you feel with limbo land.
Thank you! Acceptance of the unknown is so very hard as you know. My mom keeps suggesting that perhaps it is a "virus", you know...the standard response you get when you bring your little ones into the doctor with this or that ailment during certain times of the year and they can't pinpoint the reason for why they feel so awful. "It's just a virus" But, those viruses pass...this is hanging on for dear life and dragging me down with it. I'm so glad you have had success in a pool, and perhaps I will have to look into that just to get the endorphins of "working out" or doing something proactive that doesn't involve a painful face plant. I'm sure I could muster up a pretty good belly flop quite accidentally though! ;-)
Truly I think the MS neurologists wouldn't be so agreeable to repeat visits and numerous tests for such a diagnosis if they didn't really feel it is a possibility? But, without solid evidence, I have both them, and me...stumped!
Waiting to see a nautropathic doctor, although the lab work I had done thru Spectra Labs was very extensive. But, maybe they have something up their sleeves that can direct the search for answers.
I say we all ditch the "boat" we are paddling upstream with one paddle and book a cruise...much more enjoyable to let someone else do the "driving" to get us to our destination! ;-)
Truly I think the MS neurologists wouldn't be so agreeable to repeat visits and numerous tests for such a diagnosis if they didn't really feel it is a possibility? But, without solid evidence, I have both them, and me...stumped!
Waiting to see a nautropathic doctor, although the lab work I had done thru Spectra Labs was very extensive. But, maybe they have something up their sleeves that can direct the search for answers.
I say we all ditch the "boat" we are paddling upstream with one paddle and book a cruise...much more enjoyable to let someone else do the "driving" to get us to our destination! ;-)
5 Comments
That's the spirit!!! A cruise it is!!
We could give new meaning to "Club Med"..those seeing medical help and relief! ;-)
"seeking" not seeing
Lol lol lol ------- luv that idea!!!!!
Count me in girls xx
Well, you know I can't really comment, Karen, as I'm in the same-ish boat. Just know you can vent to me ANY time ...
After a year of symptoms, it seems that not finding lesions even with a 3T machine would strongly suggest not ms. Will your current neurologist still follow you? Has he made suggestions of other avenues to consider? What about a visit to a naturopathic doctor -- strictly because because they can test for a whole lot more nutritional deficiencies other than the standard D, B12 and magnesium and my feeling is if you've been low in one or two things, chances are there are other imbalances.
My counselor has urged me for ... well ... months that I have to come to acceptance of the "whatever", even without a diagnosis. I didn't think it was possible, however I'm attending a course right now that is helping me a lot in this area.
Meanwhile, as HVAC said, do what you can toward wellness. Exercise in a pool might be a really positive thing for you as it has been for me -- falling in a pool is way more fun ;). It is also good for my mental health AND fitness because I am WAY more able in a pool than I am on land. A physiotherapist or aquatherapist can give you balance exercises to work on in the pool. I can now actually walk heel to toe in the pool with my eye closed ... sculling with only an occasional fall. I can't even stand heel to toe on land.
HVAC, sometimes I think MRIs make it more difficult. According to my neurologist and neuro-opth, I've had lesions in my brain stem and corticospinal tract based on signs. My ms neuro has been unable to see them via MRI, therefore he says that they are not there. My mris have always been done way after the fact, and I often wonder whether I'm just an efficient remyelinator (does that happen? LOL).
Anyway, all this to say ... I'm glad there are others in the same boat here to support you and the rest of us as we sit in limbo. (((hugs)))
After a year of symptoms, it seems that not finding lesions even with a 3T machine would strongly suggest not ms. Will your current neurologist still follow you? Has he made suggestions of other avenues to consider? What about a visit to a naturopathic doctor -- strictly because because they can test for a whole lot more nutritional deficiencies other than the standard D, B12 and magnesium and my feeling is if you've been low in one or two things, chances are there are other imbalances.
My counselor has urged me for ... well ... months that I have to come to acceptance of the "whatever", even without a diagnosis. I didn't think it was possible, however I'm attending a course right now that is helping me a lot in this area.
Meanwhile, as HVAC said, do what you can toward wellness. Exercise in a pool might be a really positive thing for you as it has been for me -- falling in a pool is way more fun ;). It is also good for my mental health AND fitness because I am WAY more able in a pool than I am on land. A physiotherapist or aquatherapist can give you balance exercises to work on in the pool. I can now actually walk heel to toe in the pool with my eye closed ... sculling with only an occasional fall. I can't even stand heel to toe on land.
HVAC, sometimes I think MRIs make it more difficult. According to my neurologist and neuro-opth, I've had lesions in my brain stem and corticospinal tract based on signs. My ms neuro has been unable to see them via MRI, therefore he says that they are not there. My mris have always been done way after the fact, and I often wonder whether I'm just an efficient remyelinator (does that happen? LOL).
Anyway, all this to say ... I'm glad there are others in the same boat here to support you and the rest of us as we sit in limbo. (((hugs)))
1 Comments
I have had lesions go away. It can happen. My MRIs all look the same year after year. MS is a very individual disease. I had the classic MS MRIs with Dawson's fingers from the beginning. My first neurologist had three neurologists look at my first MRI which was not MS protocol and they all said it was MS. The next neurologist I saw because he left town said it was not MS. It took two more years. I did not have relapses so they could not figure it out. All the tests including LP showed MS but nothing symptom wise changed. Finally when it could not be anything else it had to be MS. It turned out I had had it over 40 years as a child. My changes happened in childhood. They even sent me to the Mayo when I was two.
Alex
Alex
Thanks Alex, that's the kicker...all MRIs, LP, SSEP, Nerve conduction tests are normal. The only clinical suggestive "evidence" is the hyper reflex response on my left leg and the 25% vestibular deficit of the left side. Not enough to diagnosis me of course, but abnormal results none the less.
I just tried to initiate running, like tried to take a jog/run down the hallway in my house...could not do it. It was awkward and "off", I looked ridiculous and somehow have forgotten how to run! Something I did every day prior to all this. So then I tried running in place and it was slow stepping at best. What in the world?
I just tried to initiate running, like tried to take a jog/run down the hallway in my house...could not do it. It was awkward and "off", I looked ridiculous and somehow have forgotten how to run! Something I did every day prior to all this. So then I tried running in place and it was slow stepping at best. What in the world?
1 Comments
That is no doubt frustrating.
What are your neurological exams showing? That is the key test. Before MRIs that is how they diagnosed MS. Mine were abnormal starting in 1965. They can tell where you have neurological damage from that. The insurance companies want MRIs. I was not finally diagnosed until 2009 with MS. All my tests starting in 2007 MRI and all showed MS but no neurologist would diagnose MS. 4 neurologists looked at my brain MRI in 2007 and said it has to be MS. They all said the same thing you will be diagnosed with MS but no one would actually diagnose it. I finally went to two MS Specialists. It took 11 months to get an appointment. The first one diagnosed me with MS and I went to the other as a second opinion. The first one followed me for a year and a half. If my LP had not been positive for MS I would not have been diagnosed.
I wish I had known to have symptoms cared for. I thought I needed a diagnosis. When you are diagnosed they mostly just treat symptoms. I waited to have symptoms treated. I suffered needlessly. I go to a pain clinic and to PT. My neurologist sent me. Most of your MS gets treated by other doctors. A lot of MS is not treated by a neurologist. You go to urologists, pain clinics, pts, and various other doctors. My neurologist just follows my progression.
Alex
I wish I had known to have symptoms cared for. I thought I needed a diagnosis. When you are diagnosed they mostly just treat symptoms. I waited to have symptoms treated. I suffered needlessly. I go to a pain clinic and to PT. My neurologist sent me. Most of your MS gets treated by other doctors. A lot of MS is not treated by a neurologist. You go to urologists, pain clinics, pts, and various other doctors. My neurologist just follows my progression.
Alex
4happygnomes- Agreed, this site is wonderful and a saving grace through it all. It's no secret my admiration for those here who endure this journey. One thing to keep in mind and as was pointed out to me by another amazing member, always keep an open mind to the ailment as something else looming. From your comments shared, no doubt you have already been down that road and still appear open minded to other possibilities. I get that as I've progressed that path also. Physicians of whom I've reached out such as endocrinology, oncology, internal medicine ...you name it still refer me back to neurology based on symptoms and zero findings. That in itself poses a frustration when those of the same caliber but different specialties point you back to the specialty who remains as perplexed as the patient is no easy feat to challenge.
In that end however, and knowing there is undeniably something wrong with our bodies, not functioning properly and literally disabling us at times........we must embrace the ongoing strategy in navigating forward in search of explanations. At the very least ...... maintain strength mentally and physically to keep our chines UP! I certainly can admit my darkest moments and a droopy chin with this limbo land of not knowing ........but a few sensational, cerebral and inspirational peeps here are what pull me through in those dark moments.
Lastly ... I know the words above are easier conveyed than done! Conversely, it's far more healthy to navigate this ocean of turbulent waters in the same ship than solo in a canoe with one paddle :-)
Hugs
In that end however, and knowing there is undeniably something wrong with our bodies, not functioning properly and literally disabling us at times........we must embrace the ongoing strategy in navigating forward in search of explanations. At the very least ...... maintain strength mentally and physically to keep our chines UP! I certainly can admit my darkest moments and a droopy chin with this limbo land of not knowing ........but a few sensational, cerebral and inspirational peeps here are what pull me through in those dark moments.
Lastly ... I know the words above are easier conveyed than done! Conversely, it's far more healthy to navigate this ocean of turbulent waters in the same ship than solo in a canoe with one paddle :-)
Hugs
Thank you so much for your response! Do you have any MRI abnormalities? It is truly maddening and you are so right in that no one else can truly understand the nightmare of limbo land unless you've spent time there. And wouldn't it be magical if for lack of "proof" of ms, or anything else, that all symptoms would disappear and you could return to life before this choas? That is what is hard for others to understand- doctors say I don't have it, so I must be "fine". Unfortunately, I'm not...and even feel worse than "fine" because they can't tell me what is wrong!
This site has been so wonderful to me since I first posted last July, I can't thank the members enough for the support and providing a sounding board for all this craziness!
I hope you can get answers soon, and that the diagnosis is fixable, curable, temporary. I actually pray for that for all members on this site.
This site has been so wonderful to me since I first posted last July, I can't thank the members enough for the support and providing a sounding board for all this craziness!
I hope you can get answers soon, and that the diagnosis is fixable, curable, temporary. I actually pray for that for all members on this site.
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