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MS? Does this sound like it? Info/support....help!
Likely to be 2 posts to get all info in !
Hi there - I'm Lynne, age 54 & in the UK. Up until December 2010, I was healthy, active, working 12 hour shifts, full time - in a pattern giving me 2 weeks off every 3 weeks, I remarried last year, spent our honeymoon touring New England kayaking and horseback riding. That’s just to set a brief picture of me pre-this.
I’ve spent a couple of weeks on here reading posts, looking up medical terms, symptoms and realise there are a lot of you out there undiagnosed with similar symptoms. Having an answer or a name would allow you to know what not to do that makes things worse & also what can be done to improve how you are. I’ve just read a response to someone’s info that said to post as a separate question, so that’s what I’m doing. Please bear with me. I just want to know if this is likely MS or if anyone else has experienced similar sudden onset with lasting effects?
Dec 20th driving home at night after a wedding, had to swap with my husband as I couldn't see properly. At home realised it was due to sudden onset of double vision on the right. At the wedding I'd felt a bit unbalanced a couple of times (not due to drink though!) Next morning I went to the GP, he took my BP 240/150 & checked this 3 times as it was so high – sent straight to hospital. Tests for aneurism, stroke etc .,negative. Admitted for more neurological tests, MRI, CT scans, chest xray, EMG, ECG plus more I can't remember. Vision problems were Internuclear Opthalmoplegia. All tests came back normal except 2 blood tests that were sent away. I'd been put on pyridostigmine & a steroid as this possibly was optical myasthenia, discharged 31 Dec.
10 January readmitted as my speech had started slurring alarmingly, in A&E I had violent spasms one of which lasted nearly 3hrs, further MRI done with contrast – normal. Previous blood tests - normal. My balance had gone & I couldn’t walk unaided, my feet were very unco-ordinated – like I was drunk. I also had severe neck ache, pins & needles down left arm into my hand, pain in upper left arm and was unable to grip anything - like a fork to cut up food. I had severe chest pain one day, and fast pulse, a further recurrence not as severe where it showed my BP was raised. 24hr ECG monitor done, not given results. Speech had deteriorated to the point that I sounded completely foreign, and a work colleague who I phoned thought it was an Indian call centre, the accent was that bad and speech so disjointed!
Neurologist told me this was psychological - called it Functional Neurological Disorder and prescribed amytriptyline for nerve pain and to help me sleep, plus co-codamol and ibuprofen to control pain, I asked for 2nd opinion – saw another neurologist (from same hospital) who after conferring with 1st neuro says it’s psychological also or possibly migraine effect (never had one in my life) and referred me to psychologist. I know myself and my history, and I KNOW this isn’t a psychological something in the way they are inferring. My eyes by the time of this 2nd admission had almost gone back to normal tracking although focusing wasn’t back to pre December levels. Pyridostigmine and steroids were stopped, and I was left just with the amitryptyline and pain relief meds to control things. Discharged on 31 Jan.
In April the Psychologist session was pointless, he didn’t have anything to offer – seemed doubtful as to whether he wanted to see me again. (This was at the end of the session, though I did make an appointment which I later cancelled). This is significant as he later wrote a report for my employer’s Occ Health that lied about what happened at the session. I’ll return to that later.
May - nerve conduction tests done, checking for carpal tunnel syndrome I think.
Physical Physiotherapy and Speech therapy had been organised and was ongoing from April onwards. The physios noted during some performance tests on my arm function, and my balance that it indicated a problem with a disc in my neck.
June - eventual referral to another consultant - neurosurgeon - resulted in an immediate MRI scan on my neck. The spinal cord looked clear, but the C6 disc was bulging and compressing the nerve root – which explained some of the left arm symptoms and disproved the psychological theory - for that anyway! My speech had improved from the foreign accent and I sounded more like ‘me’, but deteriorated rapidly when tired. My balance was still rubbish, and I’d had to resort to using a walking frame, as the shaking I get causes me to have a left side lean, and I would fall if nothing to hold onto.
At this stage my employer Occ Health wanted to recommend me for ill-health retirement as they could see that any recovery was extremely slow, and they had no end timeline for recovery and return to work. I received notice from 1 June, to be extended whilst Pensions dept did their investigations via independent health company.
part 2 to follow
Hi there - I'm Lynne, age 54 & in the UK. Up until December 2010, I was healthy, active, working 12 hour shifts, full time - in a pattern giving me 2 weeks off every 3 weeks, I remarried last year, spent our honeymoon touring New England kayaking and horseback riding. That’s just to set a brief picture of me pre-this.
I’ve spent a couple of weeks on here reading posts, looking up medical terms, symptoms and realise there are a lot of you out there undiagnosed with similar symptoms. Having an answer or a name would allow you to know what not to do that makes things worse & also what can be done to improve how you are. I’ve just read a response to someone’s info that said to post as a separate question, so that’s what I’m doing. Please bear with me. I just want to know if this is likely MS or if anyone else has experienced similar sudden onset with lasting effects?
Dec 20th driving home at night after a wedding, had to swap with my husband as I couldn't see properly. At home realised it was due to sudden onset of double vision on the right. At the wedding I'd felt a bit unbalanced a couple of times (not due to drink though!) Next morning I went to the GP, he took my BP 240/150 & checked this 3 times as it was so high – sent straight to hospital. Tests for aneurism, stroke etc .,negative. Admitted for more neurological tests, MRI, CT scans, chest xray, EMG, ECG plus more I can't remember. Vision problems were Internuclear Opthalmoplegia. All tests came back normal except 2 blood tests that were sent away. I'd been put on pyridostigmine & a steroid as this possibly was optical myasthenia, discharged 31 Dec.
10 January readmitted as my speech had started slurring alarmingly, in A&E I had violent spasms one of which lasted nearly 3hrs, further MRI done with contrast – normal. Previous blood tests - normal. My balance had gone & I couldn’t walk unaided, my feet were very unco-ordinated – like I was drunk. I also had severe neck ache, pins & needles down left arm into my hand, pain in upper left arm and was unable to grip anything - like a fork to cut up food. I had severe chest pain one day, and fast pulse, a further recurrence not as severe where it showed my BP was raised. 24hr ECG monitor done, not given results. Speech had deteriorated to the point that I sounded completely foreign, and a work colleague who I phoned thought it was an Indian call centre, the accent was that bad and speech so disjointed!
Neurologist told me this was psychological - called it Functional Neurological Disorder and prescribed amytriptyline for nerve pain and to help me sleep, plus co-codamol and ibuprofen to control pain, I asked for 2nd opinion – saw another neurologist (from same hospital) who after conferring with 1st neuro says it’s psychological also or possibly migraine effect (never had one in my life) and referred me to psychologist. I know myself and my history, and I KNOW this isn’t a psychological something in the way they are inferring. My eyes by the time of this 2nd admission had almost gone back to normal tracking although focusing wasn’t back to pre December levels. Pyridostigmine and steroids were stopped, and I was left just with the amitryptyline and pain relief meds to control things. Discharged on 31 Jan.
In April the Psychologist session was pointless, he didn’t have anything to offer – seemed doubtful as to whether he wanted to see me again. (This was at the end of the session, though I did make an appointment which I later cancelled). This is significant as he later wrote a report for my employer’s Occ Health that lied about what happened at the session. I’ll return to that later.
May - nerve conduction tests done, checking for carpal tunnel syndrome I think.
Physical Physiotherapy and Speech therapy had been organised and was ongoing from April onwards. The physios noted during some performance tests on my arm function, and my balance that it indicated a problem with a disc in my neck.
June - eventual referral to another consultant - neurosurgeon - resulted in an immediate MRI scan on my neck. The spinal cord looked clear, but the C6 disc was bulging and compressing the nerve root – which explained some of the left arm symptoms and disproved the psychological theory - for that anyway! My speech had improved from the foreign accent and I sounded more like ‘me’, but deteriorated rapidly when tired. My balance was still rubbish, and I’d had to resort to using a walking frame, as the shaking I get causes me to have a left side lean, and I would fall if nothing to hold onto.
At this stage my employer Occ Health wanted to recommend me for ill-health retirement as they could see that any recovery was extremely slow, and they had no end timeline for recovery and return to work. I received notice from 1 June, to be extended whilst Pensions dept did their investigations via independent health company.
part 2 to follow
THANK YOU all for answering, sorry the post was so long Sumanadevii - so much seemed to happen in a relatively short time. I thought it would help putting it all down. Doing that in itself has.
As I said, I've been reading a lot on here & will continue to do so. I don't have any choice on the type of scanner used in the UK. They don't tell you. I will have problems getting to another neuro too, Udkas, though I think I'm going to try.
I've seen 3 so far, they all work at the nearest NHS hospital & discuss their cases with each other. I thought I was having an independent 2nd opinion back in February, only to find I wasn't as he told me he wanted to read my notes & talk to the others first. That was when I was initially sent the psychological route, though 8 months later he seems to have discarded that idea; & does seem more interested in treating some symptoms now a neck scan has actually shown a physical cause.
It seems strange to have so many residual problems remaining, I thought if it was a relapse remitting type, that any current symptoms would've got better? I guess I may have some considerable waiting before getting anywhere with this going by your experiences, Tammy, and I won't stop trying to get an answer.
Vision seems to be the only thing thats nearly back to where it was. I'm going to get my eyes tested soon as my current glasses are now not good enough. I was waiting till my vision settled down a bit. The neuro did say that my retina looked very pale. Something I've not mentioned to him is that I keep getting bright flashes in my left eye, on the far left as if something is sticking, then lifts suddenly when I'm blinking. I've had retinal tears so I know that needs checking.
I'll be back if I get anywhere and if I've any more questions or more developments.
As I said, I've been reading a lot on here & will continue to do so. I don't have any choice on the type of scanner used in the UK. They don't tell you. I will have problems getting to another neuro too, Udkas, though I think I'm going to try.
I've seen 3 so far, they all work at the nearest NHS hospital & discuss their cases with each other. I thought I was having an independent 2nd opinion back in February, only to find I wasn't as he told me he wanted to read my notes & talk to the others first. That was when I was initially sent the psychological route, though 8 months later he seems to have discarded that idea; & does seem more interested in treating some symptoms now a neck scan has actually shown a physical cause.
It seems strange to have so many residual problems remaining, I thought if it was a relapse remitting type, that any current symptoms would've got better? I guess I may have some considerable waiting before getting anywhere with this going by your experiences, Tammy, and I won't stop trying to get an answer.
Vision seems to be the only thing thats nearly back to where it was. I'm going to get my eyes tested soon as my current glasses are now not good enough. I was waiting till my vision settled down a bit. The neuro did say that my retina looked very pale. Something I've not mentioned to him is that I keep getting bright flashes in my left eye, on the far left as if something is sticking, then lifts suddenly when I'm blinking. I've had retinal tears so I know that needs checking.
I'll be back if I get anywhere and if I've any more questions or more developments.
Your post was too long for me to read but I am an old woman so think nothing of it. I just want to say I hope the MRI especially of your cervical spine was done on a 3tMRI. The 1.5t just isn't strong enough to pick up most lesions in such a confined space.
In answer to your questions, "Does this sound like it?" Whatever really does sound like "it"? My complaint and still remainds my main symtom is a horrid lower backache. If someone asked a neuro does it sound like "it", they would have a good laugh. Of course it doesn't sound like MS.
We are all different. Some on this board have waited years for a dx while damage was being done to their bodies. Others were lucky in finding neuro's that listened and went outside the box. My advice to you? Don't give up until a dx makes total sense to you.
Oh yeah, and remember most on this board have been told it was anxiety, stress, depression or converstion disorder. Just know that ain't a doctor ya wanna stick with. I sure was depressed. I was depressed because I knew I was losing the use of my body and no one could tell me why. Give me an answer, I told the stupid neuro, and the depression will lift.
In answer to your questions, "Does this sound like it?" Whatever really does sound like "it"? My complaint and still remainds my main symtom is a horrid lower backache. If someone asked a neuro does it sound like "it", they would have a good laugh. Of course it doesn't sound like MS.
We are all different. Some on this board have waited years for a dx while damage was being done to their bodies. Others were lucky in finding neuro's that listened and went outside the box. My advice to you? Don't give up until a dx makes total sense to you.
Oh yeah, and remember most on this board have been told it was anxiety, stress, depression or converstion disorder. Just know that ain't a doctor ya wanna stick with. I sure was depressed. I was depressed because I knew I was losing the use of my body and no one could tell me why. Give me an answer, I told the stupid neuro, and the depression will lift.
I feel your pain, as some people say... Your experience sounds a lot like my own. I had symptoms come and go for years, but my doctor's told they were "probably migraine symptoms". So, for a long time I just figured that was what it was. When I woke up with the room spinning, and my legs shaking violently, I was told I had an inner ear problem (in my doctor's defense, I never mentioned my shaking legs- I thought it was due to my being dizzy)- but no neurological exam was given. When I started to have bladder problems, my doctor told me to do kegels. When I couldn't twist around my torso, or lift my legs to climb stairs without actually picking them up with my hands, I told my doctor, and she told me I needed to exercise more. When my arms had extreme difficulty lifting up (even to wash my hair in the shower) I figured I'd get the same answer I got about my legs, so I never reported it. I just asked my husband to put everything I needed on the counter so I could reach it, and washed up from the bathroom sink. There were lots of other things that happened.
Then last year I had a exacerbation that caused my left arm to cramp and clench up into my chest. My GP gave me a med for spasticity, and finally sent me to see a neurologist. He had an mri done, and they found lesions in several places, including small dawson's fingers in my corpus calosum (probably spelling that wrong). But he still told me to see a psychologist, and that I had a somatoform/conversion disorder. Then all he wanted to talk about was how unpleasant I was to look at because I am overweight.
I did finally get a diagnosis of Secondary Progressive Multiple Sclerosis, but not until over a year after that. All in all, it has taken over 10 years, 3 GP's, two neurologists to finally get a diagnosis. If you have MS, you will get a diagnosis eventually. Just try to be patient. There is something else I would like to share with you... Even though I felt completely vindicated when I finally got my dx- it wasn't a conversion disorder, and I wasn't making anything up-- I have to say, that the reality of having this diagnosis has been overwhelming too. At first I was so upset that my doctor's took so long to add things up; I wondered if some of the permanent damage could have been avoided if I had been able to start treatment earlier... But now, I am glad I didn't know before. Before my diagnosis, I didn't have a disease hanging over my head. I was able to live a full and active life- like you did.
The good news is this: If you have MS, you may have a relapsing and remitting form. Enjoy the time you have in between. Good luck with your situation. I know it is frustrating beyond words.
Tammy
Then last year I had a exacerbation that caused my left arm to cramp and clench up into my chest. My GP gave me a med for spasticity, and finally sent me to see a neurologist. He had an mri done, and they found lesions in several places, including small dawson's fingers in my corpus calosum (probably spelling that wrong). But he still told me to see a psychologist, and that I had a somatoform/conversion disorder. Then all he wanted to talk about was how unpleasant I was to look at because I am overweight.
I did finally get a diagnosis of Secondary Progressive Multiple Sclerosis, but not until over a year after that. All in all, it has taken over 10 years, 3 GP's, two neurologists to finally get a diagnosis. If you have MS, you will get a diagnosis eventually. Just try to be patient. There is something else I would like to share with you... Even though I felt completely vindicated when I finally got my dx- it wasn't a conversion disorder, and I wasn't making anything up-- I have to say, that the reality of having this diagnosis has been overwhelming too. At first I was so upset that my doctor's took so long to add things up; I wondered if some of the permanent damage could have been avoided if I had been able to start treatment earlier... But now, I am glad I didn't know before. Before my diagnosis, I didn't have a disease hanging over my head. I was able to live a full and active life- like you did.
The good news is this: If you have MS, you may have a relapsing and remitting form. Enjoy the time you have in between. Good luck with your situation. I know it is frustrating beyond words.
Tammy
Hi Linnty
And welcome to the MS forum. There is a box on the right hand side that contains articles in relation to MS. It's called health pages. They are great reading and might answer some of your questions in relation to MRI.
Yes you can have MS and have a normal MRI. Sometimes the doctors have to wait until you have had subsequent attacks for the plaques to be visible on MRI. MS can be a long difficult process to diagnosis. Doctors usually use both a clinical examination and MRI to help them diagnose or even a Lumbar Puncture can sometimes be the thing that they need for diagnosis. Also it can depend on the machine that you have had your MRI done on.
In answer to your question some things would indicate spinal lesions over brain lesions etc., usually the neuro's can have some idea by talking to you and by examining you. I have hyper reflexia and bladder issues and I think that often indicates spinal cord. Sometimes they can find a lesion on MRI that you are showing no symptoms for, so it varies.
I am not an expert on MS and someone else on here might answer your questions better.
If you are not happy I would get another opinion. It never hurts.
Cheers,
Udkas.
And welcome to the MS forum. There is a box on the right hand side that contains articles in relation to MS. It's called health pages. They are great reading and might answer some of your questions in relation to MRI.
Yes you can have MS and have a normal MRI. Sometimes the doctors have to wait until you have had subsequent attacks for the plaques to be visible on MRI. MS can be a long difficult process to diagnosis. Doctors usually use both a clinical examination and MRI to help them diagnose or even a Lumbar Puncture can sometimes be the thing that they need for diagnosis. Also it can depend on the machine that you have had your MRI done on.
In answer to your question some things would indicate spinal lesions over brain lesions etc., usually the neuro's can have some idea by talking to you and by examining you. I have hyper reflexia and bladder issues and I think that often indicates spinal cord. Sometimes they can find a lesion on MRI that you are showing no symptoms for, so it varies.
I am not an expert on MS and someone else on here might answer your questions better.
If you are not happy I would get another opinion. It never hurts.
Cheers,
Udkas.
Sept - Returned for follow up with 1st neuro. He is updated regarding the neck scan MRI result, and now appears very interested in symptoms:- physical strength tests show I am weak on left side in my arm (as expected) but also my legs & I’m very unco-ordinated – finger to nose test, heel down shin test; my eyes still have some residual tracking issues, & I cannot stand alone with my eyes shut. He called my shaking, intention tremors. He is not interested in the previous psychological reasons proposed and organised a further MRI brain scan. This is interesting as the neuro is now NOT going down the psychological cause route - in light of the report from psychologist sent to my Occ Health rep as I wrote earlier. He’d stated he’d explained his findings to me (he didn’t) said it was Somatoform (hadn’t a clue what that meant on reading my copy of this report) and/or Conversion Disorder (again I had no idea what this meant), that he’d proposed pharmacological treatment (he hadn’t) and that I’d declined further therapy (it was never offered for me to refuse it!).
I looked this up, and was angry, upset, and even more at a loss at this point, as it seems that confirms his summary, and the more I protest there’s a physical cause the more I confirm his diagnosis that it’s psychological. So damned if I do pursue trying to find out what’s wrong with me, and damned if I don’t as then I won’t get treatment either. The only consolation I had at this point was knowing that he was wrong as the neck scan DID show a physical cause and the neuro’s had agreed that the double vision was due to a physical cause even though they didn’t know what.
The report this Psychologist wrote had the effect of putting in doubt the ill-health retirement at this point, and even though Occ Health knew me and knew I was genuinely ill from a physical cause in their mind, the independent Health assessors would not be swayed by that. His conclusion was that it could take months of psychological therapy – even years for recovery, so at the moment I wouldn’t be able to return to any type of work, however there was a chance I would recover, however on basis of probabilities he recommended I should get an award of partial incapacity, and he covered himself further by stating that however there is sometimes an underlying neurological cause eventually found.
The report went to Pensions Trustees as it was, as I was advised to leave it as challenging it at this point may not have changed the recommendation but would just delay things further and it was already over 3 months since being given notice which had been extended a month. If I had actually been told any of his summary, and that he thought I should talk to him further I probably would have kept that 2nd appointment as I would’ve pursued all paths, just to discount them!
September’s MRI results again showed clear (it wasn’t done with contrast though as the one in January was) – the neuro was keen to point out clear gray where he said speech areas of the brain were controlled etc. I have no idea if anyone looked at the Cervical spine scan for lesions or just looked for the disc damage – from what I’ve read on here, the thoracic spine should have been scanned and checked. Does having lesions in a particular area, have a corresponding set of symptoms?
He wants to see me in 3 months, has written to my GP to prescribe something to help reduce the tremors – clonazepam, then something else if that is not successful. I’ve looked that up and I don’t like the side effects it can have – plus i’m not depressed, anxious or suicidal and I DON’T want something that might make me feel that way!! Has anyone any advice on that? My thinking processes are slowed up from what they were anyhow, and word finding is sometimes a problem and I don’t need anything that will make that worse, or to start depending on something that can mask what I already have, and cause further issues in trying to get a diagnosis.
So in 10 months, I’ve gone from a normal healthy and active 54 year old, to an unco-ordinated, weak and wobbly person who can’t speak clearly, shakes when not at rest and has wheeled zimmer frame to support a knackered body! Sort of the after effects of too much alcohol without any of the pleasures of the before! I DO have a good sense of humour and laugh at some of the things that happen, although it’s not particularly apparent from this that I do!
The good news today, was that Pensions have awarded me the partial incapacity pension with a review in 5 years. HR have also explained further that if something significant changes for the worse I can request a review earlier, where it could go to full ill-health pension, which was very reassuring. I would hope not, but good to know that’s there if needed.
Would MS start so suddenly, leaving the residual problems that I still have? Does it sound like MS? Would MRIs not show lesions, with the sort of physical evidence I am experiencing?
So many questions and nobody able so far to answer. Its very frustrating, and I am having to learn the hard way to go slow!
Thanks for reading if you got this far :)
I looked this up, and was angry, upset, and even more at a loss at this point, as it seems that confirms his summary, and the more I protest there’s a physical cause the more I confirm his diagnosis that it’s psychological. So damned if I do pursue trying to find out what’s wrong with me, and damned if I don’t as then I won’t get treatment either. The only consolation I had at this point was knowing that he was wrong as the neck scan DID show a physical cause and the neuro’s had agreed that the double vision was due to a physical cause even though they didn’t know what.
The report this Psychologist wrote had the effect of putting in doubt the ill-health retirement at this point, and even though Occ Health knew me and knew I was genuinely ill from a physical cause in their mind, the independent Health assessors would not be swayed by that. His conclusion was that it could take months of psychological therapy – even years for recovery, so at the moment I wouldn’t be able to return to any type of work, however there was a chance I would recover, however on basis of probabilities he recommended I should get an award of partial incapacity, and he covered himself further by stating that however there is sometimes an underlying neurological cause eventually found.
The report went to Pensions Trustees as it was, as I was advised to leave it as challenging it at this point may not have changed the recommendation but would just delay things further and it was already over 3 months since being given notice which had been extended a month. If I had actually been told any of his summary, and that he thought I should talk to him further I probably would have kept that 2nd appointment as I would’ve pursued all paths, just to discount them!
September’s MRI results again showed clear (it wasn’t done with contrast though as the one in January was) – the neuro was keen to point out clear gray where he said speech areas of the brain were controlled etc. I have no idea if anyone looked at the Cervical spine scan for lesions or just looked for the disc damage – from what I’ve read on here, the thoracic spine should have been scanned and checked. Does having lesions in a particular area, have a corresponding set of symptoms?
He wants to see me in 3 months, has written to my GP to prescribe something to help reduce the tremors – clonazepam, then something else if that is not successful. I’ve looked that up and I don’t like the side effects it can have – plus i’m not depressed, anxious or suicidal and I DON’T want something that might make me feel that way!! Has anyone any advice on that? My thinking processes are slowed up from what they were anyhow, and word finding is sometimes a problem and I don’t need anything that will make that worse, or to start depending on something that can mask what I already have, and cause further issues in trying to get a diagnosis.
So in 10 months, I’ve gone from a normal healthy and active 54 year old, to an unco-ordinated, weak and wobbly person who can’t speak clearly, shakes when not at rest and has wheeled zimmer frame to support a knackered body! Sort of the after effects of too much alcohol without any of the pleasures of the before! I DO have a good sense of humour and laugh at some of the things that happen, although it’s not particularly apparent from this that I do!
The good news today, was that Pensions have awarded me the partial incapacity pension with a review in 5 years. HR have also explained further that if something significant changes for the worse I can request a review earlier, where it could go to full ill-health pension, which was very reassuring. I would hope not, but good to know that’s there if needed.
Would MS start so suddenly, leaving the residual problems that I still have? Does it sound like MS? Would MRIs not show lesions, with the sort of physical evidence I am experiencing?
So many questions and nobody able so far to answer. Its very frustrating, and I am having to learn the hard way to go slow!
Thanks for reading if you got this far :)
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