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Clear MRI scans for years, memory problems and Diabetes Insipidus
Hello I just found this forum after googling for 'MS not shown on MRI' and so many of the things I read in that thread seem to apply to me.
Could MS possibly cause all these symptoms, but still not show up any lesions in my brain on 3 MRI scans done (on different machines in different hospitals under different consultants) over a ten year period?
Shortly after my youngest daughter was born in 1992 I experienced tingling and numbness in my arm, face, hands and feet. I was dropping things, slurring and forgetting words for things, stumbling and feeling dizzy and off balance. Over the next 5 years I saw various neurologists, had 2 lumber punctures, a myelogram, a couple of MRI scans, cat scans, blood tests, reflex tests and a test I don'y know the name of where they glued electrodes on my scalp and measured my brain response to physical, visual and audio stimulation. Everything came back clear except that they could see what they said was a 'significant delay in my brain's response to stimulation and an abnormal reflex when they scrape the bottom of my feet (My toes spread out and go 'up' and lock instead of curling down and 'under' my foot.) When I went for this result (more than 15 years ago) the neurologist I saw told me that I definitely had a neurological illness, that he didn't think it was MS but something else that would have a name in about 5 or 10 years time. Another neurologist on an earlier occasion said he thought that, because of my family history and given my symptoms, I probably did have MS, but it was too early for lesions to show. (My mother has and her Aunt had MS.)
My MRI scans were about 5 years apart and the neurologist at the second one said that if it was MS, lesions would definitely show up after that much time had passed, even if not in the first one.
I just went home and got on with it managing my symptoms as best as I could with rest, pacing and taking all the help I could get...
In 1999 I very suddenly became extremely thirsty. I was drinking several litres of water a day and passing vast amounts of urine. Even when I didn't drink anything at all for hours (ignoring my thirst) the passing of urine carried on - emptying a full to bursting bladder every 15-20 minutes, 24 hours a day. Tests for sugar diabetes were negative but after 14 months I was sent to an endocrinologist who made me do a water deprivation test. The outcome was that I was diagnosed with Neurogenic (Central) Diabetes Insipidus. This happens when the Pituitary gland does not produce enough - or any - Anti Diuretic Hormone and the body cannot retain water. I had another MRI scan in early 2001 to look for a cause but once again, the scan was completely clear and I was told my CDI was idiopathic (no known cause).
My memory and ability to concentrate are very impaired - and although I can think things through, plan, write letters, type notes and answer emails very well when I am lying (or sitting) down, providing there are no distractions, when I stand up and start moving around I feel like I've got senile dementia. I can't remember words for things, I can't take anything from one room to the next, not even a thought. For example I realise I need to top up the loo rolls in the bathroom - take 10 steps to my bedroom and have absolutely no idea what I'm there for. Still need to go to the loo, so go back to the bathroom to take care of that first and realise there is no loo paper. Go back to my bedroom and the only thing I remember is that I need to go to the loo, so back I go to the bathroom STILL without the loo paper. I also forget the names of my pets and children - not always, but when I do, it can take hours for them to come back to me. This has even happened when I am talking to my mum about them and I've used their name 10 times in the same call. I want to say it again and it's completely gone... I have actually had to scroll down the contacts list in my mobile because I recognise them when I see them, but I can't even remember what letter they begin with. It feels as if every conversation starts in the middle with someone saying something like "ok I'll see you tomorrow then". Even though we have just made an arrangement (and I've already addded it to my mobile scheduler) I have absolutely no idea what we will be doing, where we are going, what time or anything at all. Just as well my friends are patient!
I go out without my keys, water, purse, mobile, glasses - anything I really need is likely to be forgotten. I have walked out of the house in my pyjamas, realised in a shop I'm still wearing my slippers, at the check-out I have no money on me, can't remember my PIN number at the crucual moment (when there is a huge queue behind me and a trolley full of shopping I can't pay for blocking my hasty exit) been locked out for hours (resulting in bad dehydration has taken me weeks to bring back under control) come home after a day out to find I left the front door wide open, left the keys hanging in the lock when I get in, put dinner in the oven and forgotten to switch it on, taken it out and forgotten to switch it off...
Could MS possibly cause all these symptoms, but still not show up any lesions in my brain on 3 MRI scans done (on different machines in different hospitals under different consultants) over a ten year period? Are there any medications to help with memory and concentration prescribed to MS patients that might help me even if I don't have it? And do anti-depressants / anti-anxiety medications tend to make things better or worse. I truly don't believe I am depressed but my GP wants to start treating me for it because I told him how I avoid making appointments because I get panic attacks (having an appointment means I can't wait until I feel well enough to go out, bladder under control etc.) As soon as I feel under pressure I fall apart and an appointment is pressure!
I'm really sorry for making such a long first post - if you are still reading this then thank you for bearing with me :-) I'm happy to answer any questions and would welcome any feedback or advice you can give me!
Could MS possibly cause all these symptoms, but still not show up any lesions in my brain on 3 MRI scans done (on different machines in different hospitals under different consultants) over a ten year period?
Shortly after my youngest daughter was born in 1992 I experienced tingling and numbness in my arm, face, hands and feet. I was dropping things, slurring and forgetting words for things, stumbling and feeling dizzy and off balance. Over the next 5 years I saw various neurologists, had 2 lumber punctures, a myelogram, a couple of MRI scans, cat scans, blood tests, reflex tests and a test I don'y know the name of where they glued electrodes on my scalp and measured my brain response to physical, visual and audio stimulation. Everything came back clear except that they could see what they said was a 'significant delay in my brain's response to stimulation and an abnormal reflex when they scrape the bottom of my feet (My toes spread out and go 'up' and lock instead of curling down and 'under' my foot.) When I went for this result (more than 15 years ago) the neurologist I saw told me that I definitely had a neurological illness, that he didn't think it was MS but something else that would have a name in about 5 or 10 years time. Another neurologist on an earlier occasion said he thought that, because of my family history and given my symptoms, I probably did have MS, but it was too early for lesions to show. (My mother has and her Aunt had MS.)
My MRI scans were about 5 years apart and the neurologist at the second one said that if it was MS, lesions would definitely show up after that much time had passed, even if not in the first one.
I just went home and got on with it managing my symptoms as best as I could with rest, pacing and taking all the help I could get...
In 1999 I very suddenly became extremely thirsty. I was drinking several litres of water a day and passing vast amounts of urine. Even when I didn't drink anything at all for hours (ignoring my thirst) the passing of urine carried on - emptying a full to bursting bladder every 15-20 minutes, 24 hours a day. Tests for sugar diabetes were negative but after 14 months I was sent to an endocrinologist who made me do a water deprivation test. The outcome was that I was diagnosed with Neurogenic (Central) Diabetes Insipidus. This happens when the Pituitary gland does not produce enough - or any - Anti Diuretic Hormone and the body cannot retain water. I had another MRI scan in early 2001 to look for a cause but once again, the scan was completely clear and I was told my CDI was idiopathic (no known cause).
My memory and ability to concentrate are very impaired - and although I can think things through, plan, write letters, type notes and answer emails very well when I am lying (or sitting) down, providing there are no distractions, when I stand up and start moving around I feel like I've got senile dementia. I can't remember words for things, I can't take anything from one room to the next, not even a thought. For example I realise I need to top up the loo rolls in the bathroom - take 10 steps to my bedroom and have absolutely no idea what I'm there for. Still need to go to the loo, so go back to the bathroom to take care of that first and realise there is no loo paper. Go back to my bedroom and the only thing I remember is that I need to go to the loo, so back I go to the bathroom STILL without the loo paper. I also forget the names of my pets and children - not always, but when I do, it can take hours for them to come back to me. This has even happened when I am talking to my mum about them and I've used their name 10 times in the same call. I want to say it again and it's completely gone... I have actually had to scroll down the contacts list in my mobile because I recognise them when I see them, but I can't even remember what letter they begin with. It feels as if every conversation starts in the middle with someone saying something like "ok I'll see you tomorrow then". Even though we have just made an arrangement (and I've already addded it to my mobile scheduler) I have absolutely no idea what we will be doing, where we are going, what time or anything at all. Just as well my friends are patient!
I go out without my keys, water, purse, mobile, glasses - anything I really need is likely to be forgotten. I have walked out of the house in my pyjamas, realised in a shop I'm still wearing my slippers, at the check-out I have no money on me, can't remember my PIN number at the crucual moment (when there is a huge queue behind me and a trolley full of shopping I can't pay for blocking my hasty exit) been locked out for hours (resulting in bad dehydration has taken me weeks to bring back under control) come home after a day out to find I left the front door wide open, left the keys hanging in the lock when I get in, put dinner in the oven and forgotten to switch it on, taken it out and forgotten to switch it off...
Could MS possibly cause all these symptoms, but still not show up any lesions in my brain on 3 MRI scans done (on different machines in different hospitals under different consultants) over a ten year period? Are there any medications to help with memory and concentration prescribed to MS patients that might help me even if I don't have it? And do anti-depressants / anti-anxiety medications tend to make things better or worse. I truly don't believe I am depressed but my GP wants to start treating me for it because I told him how I avoid making appointments because I get panic attacks (having an appointment means I can't wait until I feel well enough to go out, bladder under control etc.) As soon as I feel under pressure I fall apart and an appointment is pressure!
I'm really sorry for making such a long first post - if you are still reading this then thank you for bearing with me :-) I'm happy to answer any questions and would welcome any feedback or advice you can give me!
Hi Kyle, Yes they wanted to rule out the DI being caused by a bleed in the brain or a pituitary tumour. I haven't had another MRI scan since 2001. I haven't seen a neurologist for at least 15 years, and I haven't asked my GP to refer me.
I was surprised he wanted to start me on anti-depressants because I can usually manage my panic attacks with rescue remedy and Quiet Life (both herbal remedies) and by avoiding situations that I know are going to make me anxious. Appointments, locations where access to a toilet is going to be difficult, events where there might be a queue, that kind of thing.
I didn't know that there were neurologists that specialise in MS - and I don't think I can just pick and choose who I want... (I am in the UK and an NHS patient.) I've never been told that, it just seems that you are told - go to this hospital and see this consultant at this time. Then you are under them until they close your file. We have the right to demand a second opinion if we feel the diagnosis or treatment is wrong, but I don't think even then we can say who we want to do the second opinion. I'll have to look into it - it honestly never occurred to me to ask.
The Babinski's sign doesn't have anything to do with always having icy cold feet on even a hot summer's day does it?
Thank you for your reply because it does give me something to add to my list of questions for my doctor when I see him - and the reassurance that going back to a neurologist won't be a waste of time and resources as there is a chance that with better equipment a firm diagnosis might now be possible...
I was surprised he wanted to start me on anti-depressants because I can usually manage my panic attacks with rescue remedy and Quiet Life (both herbal remedies) and by avoiding situations that I know are going to make me anxious. Appointments, locations where access to a toilet is going to be difficult, events where there might be a queue, that kind of thing.
I didn't know that there were neurologists that specialise in MS - and I don't think I can just pick and choose who I want... (I am in the UK and an NHS patient.) I've never been told that, it just seems that you are told - go to this hospital and see this consultant at this time. Then you are under them until they close your file. We have the right to demand a second opinion if we feel the diagnosis or treatment is wrong, but I don't think even then we can say who we want to do the second opinion. I'll have to look into it - it honestly never occurred to me to ask.
The Babinski's sign doesn't have anything to do with always having icy cold feet on even a hot summer's day does it?
Thank you for your reply because it does give me something to add to my list of questions for my doctor when I see him - and the reassurance that going back to a neurologist won't be a waste of time and resources as there is a chance that with better equipment a firm diagnosis might now be possible...
Hi Jordana- Welcome to our little group.
Some of what you describe can be related to MS. The foot thing is called Babinski's sign, and is often seen in MS patients. There are also many people with MS that have some cognative issues.
I'm not sure I read this right, but was your last MRI done in 2001? That a long time ago and MRI's are much more sophisticated.
I would suggest that you find a neurologist that specializes in MS. MS can be a tricky diagnosis and they are best suited for the job.
I would also avoid getting anti-depressants and or anti-anxiety meds frm a GP. In my opinion they are not qualified to prescribe them.
Kyle
Some of what you describe can be related to MS. The foot thing is called Babinski's sign, and is often seen in MS patients. There are also many people with MS that have some cognative issues.
I'm not sure I read this right, but was your last MRI done in 2001? That a long time ago and MRI's are much more sophisticated.
I would suggest that you find a neurologist that specializes in MS. MS can be a tricky diagnosis and they are best suited for the job.
I would also avoid getting anti-depressants and or anti-anxiety meds frm a GP. In my opinion they are not qualified to prescribe them.
Kyle
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