Functional symptoms?? I don't buy it!!
17 Oct 2013 at 6:54PM
Hello,
Firstly a massive thankyou to the ms society helpline. I was in a right state on Monday and the lady on the phone listened and was very compassionate.
I won't bore you with all my history but I'm another unfortunate person who has had their life turned upside down coping with neuro symptoms. My symptoms kicked off 2 1/2 yrs ago and I've experience all sorts of symptoms - vertigo, tingling, numbness, not feeling right, feeling like I've hit my funny nerve which leaves my legs and arms feeling bizarre, jaw/toungue tightening up, strange tightness below my ribcage....the list goes on. The worst is that my body doesn't like exhertion and I'm not only really able to do 20 mins walking a day. My body feels super strained when walking.
I've been seen by so many different specialists over the years (Endo, Tropical Disease Hospital (I used to work in Borneo), Neurology) and have had soooo many tests. I've had the usual battle of getting referrals and have worked my way through 4 gps:-) Sound familiar!?
I've had the feeling it's been ms throughout the whole period and have been seen by 2 ms specialists at St Marys and by a top Prof at the National. 2 of them said it's not ms (but failed to tell me what else it could be) and the other guy is saying there is no evidence of ms but agrees it sometimes takes yrs to show in scans. To date I've had 5 mris (brain and spine) and have actually been in a 3T scanner. Nerve conductions done in the summer 2012 were negative. So far all the specialists do not want me to have a LP for obvious reasons.
Naturally I've been through periods of extreme distress and have been popped on anxiety tablets. I've tried out soooo many holistic treatments/eating super healthily but it doesn't seem to take away the symptoms. After recent panic attacks the National have popped me in the 'unexplained symptoms / functional' category. Hmmm I just don't buy it. I feel like I'm being brainwashed - I know my body. I used to be super sporty. I really don't buy that subconsciously I'm frightened of sports I used to do hence it sets off symptoms. Its like trying to tell someone whose broken their leg that its in their head!! Clearly I accept the body and mind are very closely linked.
I'm not sure really what to do. Yes I'm going back to my neuro in a month and no doubt will have another scan. Can anyone recommend the best ms consultant out there and let me know if they have any experience of genetic testing to get a diagnosis. Obviously i don''t want ms but if I have it I know its best to get treatment asap!
Any advice would be appreciated!!
Firstly a massive thankyou to the ms society helpline. I was in a right state on Monday and the lady on the phone listened and was very compassionate.
I won't bore you with all my history but I'm another unfortunate person who has had their life turned upside down coping with neuro symptoms. My symptoms kicked off 2 1/2 yrs ago and I've experience all sorts of symptoms - vertigo, tingling, numbness, not feeling right, feeling like I've hit my funny nerve which leaves my legs and arms feeling bizarre, jaw/toungue tightening up, strange tightness below my ribcage....the list goes on. The worst is that my body doesn't like exhertion and I'm not only really able to do 20 mins walking a day. My body feels super strained when walking.
I've been seen by so many different specialists over the years (Endo, Tropical Disease Hospital (I used to work in Borneo), Neurology) and have had soooo many tests. I've had the usual battle of getting referrals and have worked my way through 4 gps:-) Sound familiar!?
I've had the feeling it's been ms throughout the whole period and have been seen by 2 ms specialists at St Marys and by a top Prof at the National. 2 of them said it's not ms (but failed to tell me what else it could be) and the other guy is saying there is no evidence of ms but agrees it sometimes takes yrs to show in scans. To date I've had 5 mris (brain and spine) and have actually been in a 3T scanner. Nerve conductions done in the summer 2012 were negative. So far all the specialists do not want me to have a LP for obvious reasons.
Naturally I've been through periods of extreme distress and have been popped on anxiety tablets. I've tried out soooo many holistic treatments/eating super healthily but it doesn't seem to take away the symptoms. After recent panic attacks the National have popped me in the 'unexplained symptoms / functional' category. Hmmm I just don't buy it. I feel like I'm being brainwashed - I know my body. I used to be super sporty. I really don't buy that subconsciously I'm frightened of sports I used to do hence it sets off symptoms. Its like trying to tell someone whose broken their leg that its in their head!! Clearly I accept the body and mind are very closely linked.
I'm not sure really what to do. Yes I'm going back to my neuro in a month and no doubt will have another scan. Can anyone recommend the best ms consultant out there and let me know if they have any experience of genetic testing to get a diagnosis. Obviously i don''t want ms but if I have it I know its best to get treatment asap!
Any advice would be appreciated!!
18 Oct 2013 at 12:24PM
Hi Baligirl
I have recently had genetic testing for Ehlers Danlos, just like you, saw several neurologist over 5 year period, was originally thought MS, had 8 MRI scans showing non specific spots but never had any changes for diagnosis of MS and had LP clear,
My latest neuro noticed I had lax joints which I was born with (not one of the other neuros or consultants noticed and i never thought of myself as being bendy) so sent me to Sheffield Ehlers danlos diagnostic clinic where I was diagnosed.
I too have all the symptoms you describe and have done for the last 5 years and seen many different specialists and had way too many tests.
Just a thought but are you flexible look at the Beighton scale ( I suprisingly scored 9/9 ) check might be worth a thought for your new neuro if you turn out to be flexible also.
Good Luck
Noms
I have recently had genetic testing for Ehlers Danlos, just like you, saw several neurologist over 5 year period, was originally thought MS, had 8 MRI scans showing non specific spots but never had any changes for diagnosis of MS and had LP clear,
My latest neuro noticed I had lax joints which I was born with (not one of the other neuros or consultants noticed and i never thought of myself as being bendy) so sent me to Sheffield Ehlers danlos diagnostic clinic where I was diagnosed.
I too have all the symptoms you describe and have done for the last 5 years and seen many different specialists and had way too many tests.
Just a thought but are you flexible look at the Beighton scale ( I suprisingly scored 9/9 ) check might be worth a thought for your new neuro if you turn out to be flexible also.
Good Luck
Noms
18 Oct 2013 at 2:07PM
Hi Noms,
Thanks so much for your reply:-). I'm sorry to hear about your diagnosis but I can imagine it must be a relief actually having a name to it. It's so weird that my scans look totally clear - especially since the symptoms are so severe:-(. I'm not particulary flexi but v interesting what you said. I'm def going to mention genetic testing to my Neuro who thank goodness takes me seriously!
Have you started taking medication and is it helping? I do hope you are feeling better:-)
Thanks so much for your reply:-). I'm sorry to hear about your diagnosis but I can imagine it must be a relief actually having a name to it. It's so weird that my scans look totally clear - especially since the symptoms are so severe:-(. I'm not particulary flexi but v interesting what you said. I'm def going to mention genetic testing to my Neuro who thank goodness takes me seriously!
Have you started taking medication and is it helping? I do hope you are feeling better:-)
18 Oct 2013 at 6:01PM
hello again
unfortunately it appears i have a lot more going on and am due at the National for autonomic testing soon, I also had a nerve conduction and EMG recenly which showes muscle problems (even though my previous 3 with different neuro were normal) so need to have a muscle biopsy (not looking forward to that)
its been a long road but feel my latest neurologist just might sort this sorry mess out at last and i can start to get treatment to feel better, thanks for asking.
Glad you are happy with your neurologist that helps a lot, hope you get some results too and it doesnt take as long as me!
best wishes
noms
unfortunately it appears i have a lot more going on and am due at the National for autonomic testing soon, I also had a nerve conduction and EMG recenly which showes muscle problems (even though my previous 3 with different neuro were normal) so need to have a muscle biopsy (not looking forward to that)
its been a long road but feel my latest neurologist just might sort this sorry mess out at last and i can start to get treatment to feel better, thanks for asking.
Glad you are happy with your neurologist that helps a lot, hope you get some results too and it doesnt take as long as me!
best wishes
noms
19 Oct 2013 at 12:53PM
Sometimes I wonder if my symptoms are functional. Although I
do have spasticity and brisk reflexes and a positive babinski sign. Do
you have any features like that on a physical neuro exam Noms?
I had a spinal lesion/atrophy which has now resolved. Symptoms certainly have not though! LP is clear.
Moyna xxx
I had a spinal lesion/atrophy which has now resolved. Symptoms certainly have not though! LP is clear.
Moyna xxx
19 Oct 2013 at 1:19PM
Hi Moyna
Yes I have positive babinski started off with brisk reflexes and one sided weakness but have now lost most reflexes, plus lots of other neuro exam abnormalities, know what you mean about functional but if reflexes are abnormal there is something causing that which is not functional which is why i and my fantastic gp have not let my issues drop and are still looking for answers like most on here. TIME WILL TELL
good luck
Noms
Yes I have positive babinski started off with brisk reflexes and one sided weakness but have now lost most reflexes, plus lots of other neuro exam abnormalities, know what you mean about functional but if reflexes are abnormal there is something causing that which is not functional which is why i and my fantastic gp have not let my issues drop and are still looking for answers like most on here. TIME WILL TELL
good luck
Noms
19 Oct 2013 at 1:29PM
There is no genetic test for MS, for the simple reason
there's no MS gene. Although several dozen genes (I think it's probably
more by now) have been implicated as risk factors, none of them -
together, or in isolation - mean the person does have or certainly will
get MS. Having a high number of the "risky" genes still wouldn't prove
your health problem definitely was MS, and not something else.
So the only reason to have a genetic test would be to rule out genetically provable alternatives. It couldn't prove you've got MS.
Tina
So the only reason to have a genetic test would be to rule out genetically provable alternatives. It couldn't prove you've got MS.
Tina
20 Oct 2013 at 6:58PM
Noms you poor thing having to have a biopsy. I really hope
its not too painful. Interesting that it took quite a few goes before
the nerve conduction studies showed abnormalities. It sounds like you're
going to get your answers soon.
Thanks Tina re. the genetic testing. All v interesting. Awaiting my ms appointment in a month. no doubt will be popped back in the delightful mri again! I've had 5 mris already in 2 1/2 yrs. In disbelief its not showing anything! In a way i feel desperate to have an lp in the hope to get an answer. All the specialists are against it. I suppose its not worth having such an invasive test if it could unsettle things even more
Thanks Tina re. the genetic testing. All v interesting. Awaiting my ms appointment in a month. no doubt will be popped back in the delightful mri again! I've had 5 mris already in 2 1/2 yrs. In disbelief its not showing anything! In a way i feel desperate to have an lp in the hope to get an answer. All the specialists are against it. I suppose its not worth having such an invasive test if it could unsettle things even more
20 Oct 2013 at 6:59PM
Noms you poor thing having to have a biopsy. I really hope
its not too painful. Interesting that it took quite a few goes before
the nerve conduction studies showed abnormalities. It sounds like you're
going to get your answers soon.
Thanks Tina re. the genetic testing. All v interesting. Awaiting my ms appointment in a month. no doubt will be popped back in the delightful mri again! I've had 5 mris already in 2 1/2 yrs. In disbelief its not showing anything! In a way i feel desperate to have an lp in the hope to get an answer. All the specialists are against it. I suppose its not worth having such an invasive test if it could unsettle things even more
Thanks Tina re. the genetic testing. All v interesting. Awaiting my ms appointment in a month. no doubt will be popped back in the delightful mri again! I've had 5 mris already in 2 1/2 yrs. In disbelief its not showing anything! In a way i feel desperate to have an lp in the hope to get an answer. All the specialists are against it. I suppose its not worth having such an invasive test if it could unsettle things even more
20 Oct 2013 at 8:05PM
Hi Baligirl,
I to have had symptoms on and off now since 2006 with lots of things going on, and no diagnosis. I have had to change alot in my life from a financial prespective too as my work place finished me on ill health. I see my Nuero in Feb and was thinking seriously of going for Genetic testing before seeing him, just so i can share results. I was looking at using 23 and me in America, but I am just not sure. I have looked for something in this country but have not got anywhere. Its the expensive of it all.
I to have had symptoms on and off now since 2006 with lots of things going on, and no diagnosis. I have had to change alot in my life from a financial prespective too as my work place finished me on ill health. I see my Nuero in Feb and was thinking seriously of going for Genetic testing before seeing him, just so i can share results. I was looking at using 23 and me in America, but I am just not sure. I have looked for something in this country but have not got anywhere. Its the expensive of it all.
No comments:
Post a Comment