Aa
MS or not MS?
Hi everyone, I am new to these forums and just decided to post after ANOTHER incredibly frustrating and useless neuro visit. I am a 47 year old woman and started getting symptoms (parashesiae) feet then hands 4 years ago. In retrospect I have had similar but less severe symptoms for a good 25 years. I don't have an RR course, rather symptoms are gradually becoming worse and recently I have got some bladder and bowel symptoms. I have a lot of sensory symptoms and the fatigue is unbelievable, especially in hot weather. I also get sick in cold weather - I am unable to maintain body temp when the ambient temp is less than 20 c. I once got so cold (bt= 34) that I was hospitalised for clinical hypothermia and had cold diuresis etc. My MRI is positive for white matter hyper intense lesions though none have ever enhanced, and I have had a lot of MRI's. They don,t exactly follow the McDonald criteria but how accurate is that meant to be these days?There are some para ventricular, some deep cortical in
temporal and frontal lobes.There are none in the Corpus callosum. My sensory cortex is practically all white. The first neuroradiologist said I have MS. Since then I have had others say there,s no way its MS. I have even had the SAME neuro radiologist, months apart, reporting on essentially the same MRI, saying yes MS and no its not ! There has been one new lesion develop in 4 years. I have had 3 LP,s , showing either no or 1 OCB. I have had tests for all possible other differentials, and even the Mayo couldn't diagnose me, except with their standard rubbish anxiety/ somatosization BS. VER, AER, SSEP negative, and I could not tolerate the motor evoked potentials, it felt as though I was being electrocuted. Needless to say I am desperate for a diagnosis and some closure. I have had to resign my job but because I have no diagnosis, I can,t get any pension or insurance help. My neurologist will not diagnose MS but he has not offered an alternative explanation to why my life now is essentially ruined. I don,t want to be a neurologist basher, as I believe they have chosen the most difficult and unsatisfying specialty, but I don't think there is ever any excuse for calling someone (me) a waste of resources, drug addict, and malingerer, as I have been called by some. I would appreciate any medical professional's comment on this if there is anyone on this forum who is a neuro or general practitioner.
temporal and frontal lobes.There are none in the Corpus callosum. My sensory cortex is practically all white. The first neuroradiologist said I have MS. Since then I have had others say there,s no way its MS. I have even had the SAME neuro radiologist, months apart, reporting on essentially the same MRI, saying yes MS and no its not ! There has been one new lesion develop in 4 years. I have had 3 LP,s , showing either no or 1 OCB. I have had tests for all possible other differentials, and even the Mayo couldn't diagnose me, except with their standard rubbish anxiety/ somatosization BS. VER, AER, SSEP negative, and I could not tolerate the motor evoked potentials, it felt as though I was being electrocuted. Needless to say I am desperate for a diagnosis and some closure. I have had to resign my job but because I have no diagnosis, I can,t get any pension or insurance help. My neurologist will not diagnose MS but he has not offered an alternative explanation to why my life now is essentially ruined. I don,t want to be a neurologist basher, as I believe they have chosen the most difficult and unsatisfying specialty, but I don't think there is ever any excuse for calling someone (me) a waste of resources, drug addict, and malingerer, as I have been called by some. I would appreciate any medical professional's comment on this if there is anyone on this forum who is a neuro or general practitioner.
Best Answer
Hi JJ , sorry for my late reply. I started one the other night then lost it all since I had not logged in (or something like that!) Yes, I am sure my symptoms are related to those spots- you can't have as much brain as mine whited out and not feel sick all the time. Thanks yeah, I'll look at the search function.
I did get my MRI looked at my the head of physiology at a major university here. He does brain research. He looked at the MRI, and before I told him my symptoms, he said, I bet you have this, this and this. And he was dead right. He understood that the white spots cause the symptoms and could match the location of the spots with the symptoms. Not a single neurologist ever validated my symptoms or agreed the spots could be causing my problems. Do they not learn about regions of the brain and what they do? Arggggh.
I did get my MRI looked at my the head of physiology at a major university here. He does brain research. He looked at the MRI, and before I told him my symptoms, he said, I bet you have this, this and this. And he was dead right. He understood that the white spots cause the symptoms and could match the location of the spots with the symptoms. Not a single neurologist ever validated my symptoms or agreed the spots could be causing my problems. Do they not learn about regions of the brain and what they do? Arggggh.
COMMUNITY LEADER
rofl that should read "You'll find we are not 'only' good with hugs and support....."
Hi JJ - yeah sorry for the monologue- I wasn't sure if I could break it up in this reply box. My first MRI was the most detailed and the neuroradiologist described them as plaques. I was in some shock so I had to call him back and I asked "Do you mean like the plaques in MS? ? and he said "Yes".
The report read "multiple focal T2 hyperintensities particularly involving the deep and to a lesser degree the subcortical white matter of the frontal and parietal lobes and to a lesser degree the posterior temporal lobes bilaterally.
"There is a focal small lesion in the periventricular WM of the left frontoparietal region as well as the right occipital lobe"
There is a cluster of at least 3 focal hyperintensities in the right cerebellar hemisphere, each measuring 1-2 mm"
I'm glad you made me revisit this JJ, since I had forgotten about the posterior fossa (cerebellar) lesions - reported only once in many MRI's but present from the first. I just had another MRI so I will call the radiologist and get them to recheck the cerebellar lesions for changes, since I am way dizzy lately.
The new lesion I got between April and December 2010 was periventricular.
So I think I have satisfied Mr MacDonald with 2 of 4.
The thing is, I could care less about the spots, if only I didn't feel so rotten all the time,
I think you have hit it right on about that neuro- he was unbelievable. Unfortunately (or fortunately for other patients!) he has disappeared, or I would take some action.
Thanks for caring JJ :)
Teddy
The report read "multiple focal T2 hyperintensities particularly involving the deep and to a lesser degree the subcortical white matter of the frontal and parietal lobes and to a lesser degree the posterior temporal lobes bilaterally.
"There is a focal small lesion in the periventricular WM of the left frontoparietal region as well as the right occipital lobe"
There is a cluster of at least 3 focal hyperintensities in the right cerebellar hemisphere, each measuring 1-2 mm"
I'm glad you made me revisit this JJ, since I had forgotten about the posterior fossa (cerebellar) lesions - reported only once in many MRI's but present from the first. I just had another MRI so I will call the radiologist and get them to recheck the cerebellar lesions for changes, since I am way dizzy lately.
The new lesion I got between April and December 2010 was periventricular.
So I think I have satisfied Mr MacDonald with 2 of 4.
The thing is, I could care less about the spots, if only I didn't feel so rotten all the time,
I think you have hit it right on about that neuro- he was unbelievable. Unfortunately (or fortunately for other patients!) he has disappeared, or I would take some action.
Thanks for caring JJ :)
Teddy
COMMUNITY LEADER
Can you please brake up your posts into smaller blocks of text, a lot of us have visual and or cognitive issues, that makes reading the larger blocks really difficult and it will limit the number of responses you'll get too. ta
Well you must of done something to really p!ss that neuro off, to have him gunning for you like that, though some have ego's bigger than tassie and just asking an intelligent question can be enough if they have a God complex. Actually being annoyed or irritated by your patient 'use to be' the factor for mental health causation instead of neurological, that's not that the neuro has a mental health issue (lol should be) but the patient has MH issues just because they are annoying..... sheeesh what Neanderthal bully's!
I personally would be more confident in a young neuroimmunologist, who specializes in all neuro diseases and researcher to work out causation, than just about anyone else. As an unanswered puzzle your interesting, and interesting will having him looking outside the boxes because what's been said isn't relevant or important to him........factual hard evidence is what he'll focus in on because that doesn't lie or have an ego.
Going back to basics, hard evidence isn't opinion based like clinical can be, so you have 30 UBO's (unidentified bright objects) showing up on your MRI, confused about them being UBO's and not lesions. UBO's are commonly not anything but ????? (can't remember the words) something to do with the MRI itself......an echo I'm thinking but generally there's the odd few not 30, hence my confusion? If the neuroimmunologist is calling them lesions then i'd call them lesions.
Where they are located is important for meeting the Mcdonald criteria, and its suppose to help with dx not hinder :o) it been revised and revised and now you only need lesions in at least 2 of the 4 specific areas (periventricular, juxtacortical, infratentorial, spinal cord) for more on the latest Mcdonald see http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full
You know i think for your age group, gander, sx's history, evidence etc MS would probably be the most common neurological condition in the world but there are the MS mimics. None neurological causes are usually more common but it you do just look at the evidence, if it is something other than MS, id of thought there was very few left that could cause the lesions, sx's, history etc etc that you've got...but what that is I think is something that maybe needs to be asked.
Sorry i've lost the plot lol but what i'm thinking is that the alternatives would have to be limited, less common than MS and where those lesions are is going to be one of the defining factors. Do you know where they are?
Cheers...........JJ
Well you must of done something to really p!ss that neuro off, to have him gunning for you like that, though some have ego's bigger than tassie and just asking an intelligent question can be enough if they have a God complex. Actually being annoyed or irritated by your patient 'use to be' the factor for mental health causation instead of neurological, that's not that the neuro has a mental health issue (lol should be) but the patient has MH issues just because they are annoying..... sheeesh what Neanderthal bully's!
I personally would be more confident in a young neuroimmunologist, who specializes in all neuro diseases and researcher to work out causation, than just about anyone else. As an unanswered puzzle your interesting, and interesting will having him looking outside the boxes because what's been said isn't relevant or important to him........factual hard evidence is what he'll focus in on because that doesn't lie or have an ego.
Going back to basics, hard evidence isn't opinion based like clinical can be, so you have 30 UBO's (unidentified bright objects) showing up on your MRI, confused about them being UBO's and not lesions. UBO's are commonly not anything but ????? (can't remember the words) something to do with the MRI itself......an echo I'm thinking but generally there's the odd few not 30, hence my confusion? If the neuroimmunologist is calling them lesions then i'd call them lesions.
Where they are located is important for meeting the Mcdonald criteria, and its suppose to help with dx not hinder :o) it been revised and revised and now you only need lesions in at least 2 of the 4 specific areas (periventricular, juxtacortical, infratentorial, spinal cord) for more on the latest Mcdonald see http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full
You know i think for your age group, gander, sx's history, evidence etc MS would probably be the most common neurological condition in the world but there are the MS mimics. None neurological causes are usually more common but it you do just look at the evidence, if it is something other than MS, id of thought there was very few left that could cause the lesions, sx's, history etc etc that you've got...but what that is I think is something that maybe needs to be asked.
Sorry i've lost the plot lol but what i'm thinking is that the alternatives would have to be limited, less common than MS and where those lesions are is going to be one of the defining factors. Do you know where they are?
Cheers...........JJ
Hi and thanks to immisceo, Kyle and Pastor Dan, and JJ. You have all certainly made me feel welcome and supported. Kyle- my neurologist is a neuroimmunologist, so he specializes in all neuro diseases caused by an immune process (a vast list!) He is young, and research is his primary interest. I think takes a very academic look at diagnosing MS, and because immunology is his "thing" he wants to see OCB's before he will diagnose me. I know from my own experience that relatively common diseases occur "relatively commonly" and that younger graduates rule them out too readily, and they don't understand the limitations of testing. I feel if I walked into an MS specialist's office in the US, that I would be diagnosed straight off. There are too many stories on these forums of people not being diagnosed for years, and then its SPMS (Kyle I think that was you?).
JJ -thanks so much for staying up late and writing such a good reply. You make a good point in reminding us that MS is still a clinical diagnosis. Yesterday at the neuro visit I had planned to get him to do a full neuro exam on me since he hasn't done one for years!! Of course he was too busy talking about his research, then we ran out of time!! I have had some "hard" neuro exam findings - and these have been reported by different neurologists. I can't believe the different exam findings between these guys! The best exam was actually the ER resident when I first presented there with the numb and tingling feet. He found sustained clonus (longer on the L), and hyperreflexia. I have seen a neuroophthalmologist who has diagnosed R sided ocular numbness- I have no corneal or palpebral reflex on the R. At least that's measurable- but they still have to believe you when you say "My right eye IS NUMB!!" And I have a R sided horners (I have noticed the ptosis for years). On the mental stuff- I had an assessment that was totally normal by a psychiatrist after an obnoxious neurologist threatened (by phone and e mail) to commit me. He was the same one who called me a waste of resources and a drug addict. I just don't want to be put in the mental health box for a pension- you can't get rid of that tag. It may get in the way of a proper diagnosis. There really have only been 2 (out of a lot) of neuros (the guy above and the Mayo) who have mentioned that - and from what I have heard the Mayo are famous for it. I took the meds the Mayo prescribed for about a year which of course did nothing for my symptoms except make me more tired. I actually would love it to be a mental health issue - then its treatable! But as one neuro said to me - "Now, lets look at these white spots..... Your'e not making THOSE up!!" ARGGHHH. I have about 30 UBO's, but I can't get a dx, whereas someone else on this forum has 1 x 3 mm UBO and has a Dx!! How so? JJ- I don't take any meds except Vitamin B1 and Ca supplement. Thanks all, should get to my other stuff. Teddy :)
JJ -thanks so much for staying up late and writing such a good reply. You make a good point in reminding us that MS is still a clinical diagnosis. Yesterday at the neuro visit I had planned to get him to do a full neuro exam on me since he hasn't done one for years!! Of course he was too busy talking about his research, then we ran out of time!! I have had some "hard" neuro exam findings - and these have been reported by different neurologists. I can't believe the different exam findings between these guys! The best exam was actually the ER resident when I first presented there with the numb and tingling feet. He found sustained clonus (longer on the L), and hyperreflexia. I have seen a neuroophthalmologist who has diagnosed R sided ocular numbness- I have no corneal or palpebral reflex on the R. At least that's measurable- but they still have to believe you when you say "My right eye IS NUMB!!" And I have a R sided horners (I have noticed the ptosis for years). On the mental stuff- I had an assessment that was totally normal by a psychiatrist after an obnoxious neurologist threatened (by phone and e mail) to commit me. He was the same one who called me a waste of resources and a drug addict. I just don't want to be put in the mental health box for a pension- you can't get rid of that tag. It may get in the way of a proper diagnosis. There really have only been 2 (out of a lot) of neuros (the guy above and the Mayo) who have mentioned that - and from what I have heard the Mayo are famous for it. I took the meds the Mayo prescribed for about a year which of course did nothing for my symptoms except make me more tired. I actually would love it to be a mental health issue - then its treatable! But as one neuro said to me - "Now, lets look at these white spots..... Your'e not making THOSE up!!" ARGGHHH. I have about 30 UBO's, but I can't get a dx, whereas someone else on this forum has 1 x 3 mm UBO and has a Dx!! How so? JJ- I don't take any meds except Vitamin B1 and Ca supplement. Thanks all, should get to my other stuff. Teddy :)
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Hey fellow Ozzie, welcome to our little MS community!
I'm not going to neuro bash either but one thing i've learnt is that we do things differently than other countries and 'some' of our neuro's don't know enough about MS to dx, well unless its text book perfect and MS unfortunately hasn't read the book. lol
I can't say if you do have MS or not, not having lesions in the Corpus callosum is a common enough explanation i've read given to Ozzies for why they were initially told they don't have MS, the other common one is no 0bands. MS is still suppose to be a 'clinical' dx and the test results supporting evidence leaning towards the dx but for some odd reason the clinical isn't always seen as important evidence by some neuro's.
I would suggest you create a list of what clinical signs you have, which are the abnormal neuro tests, some point harder to neurological causation than others eg unilateral clonus, nystagmus etc. Add to your list the individual abnormal/normal test results eg MRI, blood, LP etc, and any unexplained or dxed medical history. Its also a good idea to look at any medications you take, sometimes there are side effects involved that you didn't expect, drugs .com is good to give you an idea if there is a possibility going on there.
If you have been told its psychological then it is in your best interest to get your mental health assessed! I am not saying it is, just that you need to know one way or the other, if it is there's your answer and solution but if its not, then you get that important piece of paper that rules it out and shuts that turkey down. Get it done by a trained psychologist or psychiatrist and not a GP.
And on that note, you are entitled to a disability pension with a dx mental health condition and there is NO shame in getting help or taking that loop hole, if mental health (at this time) is what the neuro's are putting down (in writing) as the cause...........take it! Your GP can get you 6 weeks of benefits, for depression or anxiety and also 6 free appointments with a psychologist of your choosing, so speak to your GP about the help that's available short term and if they will help you get a disability pension for long term, you wont know until you ask.
Its very late and i must go to bed lol but i wanted to respond despite the time, anyhoo i'm happy to try and help in any way I can :o)
Cheers...........JJ
I'm not going to neuro bash either but one thing i've learnt is that we do things differently than other countries and 'some' of our neuro's don't know enough about MS to dx, well unless its text book perfect and MS unfortunately hasn't read the book. lol
I can't say if you do have MS or not, not having lesions in the Corpus callosum is a common enough explanation i've read given to Ozzies for why they were initially told they don't have MS, the other common one is no 0bands. MS is still suppose to be a 'clinical' dx and the test results supporting evidence leaning towards the dx but for some odd reason the clinical isn't always seen as important evidence by some neuro's.
I would suggest you create a list of what clinical signs you have, which are the abnormal neuro tests, some point harder to neurological causation than others eg unilateral clonus, nystagmus etc. Add to your list the individual abnormal/normal test results eg MRI, blood, LP etc, and any unexplained or dxed medical history. Its also a good idea to look at any medications you take, sometimes there are side effects involved that you didn't expect, drugs .com is good to give you an idea if there is a possibility going on there.
If you have been told its psychological then it is in your best interest to get your mental health assessed! I am not saying it is, just that you need to know one way or the other, if it is there's your answer and solution but if its not, then you get that important piece of paper that rules it out and shuts that turkey down. Get it done by a trained psychologist or psychiatrist and not a GP.
And on that note, you are entitled to a disability pension with a dx mental health condition and there is NO shame in getting help or taking that loop hole, if mental health (at this time) is what the neuro's are putting down (in writing) as the cause...........take it! Your GP can get you 6 weeks of benefits, for depression or anxiety and also 6 free appointments with a psychologist of your choosing, so speak to your GP about the help that's available short term and if they will help you get a disability pension for long term, you wont know until you ask.
Its very late and i must go to bed lol but i wanted to respond despite the time, anyhoo i'm happy to try and help in any way I can :o)
Cheers...........JJ
Hi Teddy- Sorry you seem to be stuck in Limboland. As PD and Immisceo have mentioned, there are no medical doctors on this forum.
It seems to my non-medical school educated brain that your lack of enhancing lesions and your "negative" LP results agree with each other. O-Bands are an indication of inflammation in the CSF. Enhancing lesions are a source of inflammation in the CSF. That said, I'm not certain that o-bands ever go away. Meaning that if you have o-bands associated with an active lesion, and the lesion becomes "inactive", do the associated o-bands go away? Maybe someone else can answer.
I don't know whether you can go to a different neurologist. JJ, aka Supermum_ms, is one of the forum monitors here and is also from Australia. Perhaps she can help. If you can, I would look for a neurologist that specializes in MS. Non MS neuros don;t always understand the disease and can be dismissive when the topic comes up.
Keep us posted.
Kyle
It seems to my non-medical school educated brain that your lack of enhancing lesions and your "negative" LP results agree with each other. O-Bands are an indication of inflammation in the CSF. Enhancing lesions are a source of inflammation in the CSF. That said, I'm not certain that o-bands ever go away. Meaning that if you have o-bands associated with an active lesion, and the lesion becomes "inactive", do the associated o-bands go away? Maybe someone else can answer.
I don't know whether you can go to a different neurologist. JJ, aka Supermum_ms, is one of the forum monitors here and is also from Australia. Perhaps she can help. If you can, I would look for a neurologist that specializes in MS. Non MS neuros don;t always understand the disease and can be dismissive when the topic comes up.
Keep us posted.
Kyle
Welcome, Teddy. Looks like immesceo has given you the basics. I don't know where the post is for which you are looking, but I did want to say we hope you find our non-professional input to be as pleasant as any, but even more, more helpful than most. We've been hre quite a while, and the collective wisdom accumulated is quite well worth the time it might take to absorb, IMHO. Ask anything. Someone will share their perspective.
Thanks immisceo :) I've had a look at the health pages. The one on OCB was v helpful. I'm having another LP soon so will make sure it's all done properly . I am looking for a post I read on this forum from someone who had late appearing OCB 's , but can't re find it . Can you ( or anyone else ) help ? Thanks , Teddy
Hi Teddy.
That certainly does sound like you're at an understandably frustrating place. We're just a forum of non-professional folks with MS or those like yourself in the process of figuring what's going on with our health. (We have had those on the forum with medical backgrounds who have added immeasurably to the information on offer in our little corner of the web, however).
As you're brand new here, I'd like to direct you to our health pages. These may or may not directly relate to your own case, but there is truly a wealth of information there that can help you make sense out several things (MacDonald criteria, MRI results, etc.). http://www.medhelp.org/health_pages/list?cid=36
Also, I'd like to add that a few of our forum members are from Australia too and can perhaps add their personal experiences with the diagnostic process as it is there (these things seem to vary a good bit by location).
Neurologist and testing run-around is also something that many of us can relate to, so whilst you may not find precise medical advice here, you can most certainly find plenty of empathetic people who've been there.
That certainly does sound like you're at an understandably frustrating place. We're just a forum of non-professional folks with MS or those like yourself in the process of figuring what's going on with our health. (We have had those on the forum with medical backgrounds who have added immeasurably to the information on offer in our little corner of the web, however).
As you're brand new here, I'd like to direct you to our health pages. These may or may not directly relate to your own case, but there is truly a wealth of information there that can help you make sense out several things (MacDonald criteria, MRI results, etc.). http://www.medhelp.org/health_pages/list?cid=36
Also, I'd like to add that a few of our forum members are from Australia too and can perhaps add their personal experiences with the diagnostic process as it is there (these things seem to vary a good bit by location).
Neurologist and testing run-around is also something that many of us can relate to, so whilst you may not find precise medical advice here, you can most certainly find plenty of empathetic people who've been there.
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You know those blastedly inconvenient "spots", could if MS is the right answer to your puzzle, actually be the reason why you feel so rotten all the time. Why don't you 'search this community' found at the top of your screen, and have a look at the posts on 'vertigo' and some of your other sx's. You'll find we are not all good with hugs and support but we often have a few tips and ticks up our sleeves, that you might find handy to know and try out :o)
Cheers..........JJ