New symptoms...

New diagnosis and before diagnosis
1

Hi all,

I have been in limbo for what seems like a lifetime.

My spine spasms, loss of sensation in my legs with severe shaking spasm pain that leaves me laid up in bed for 2/3 weeks needed full personal care etc is becoming more frequent. I have just had another MRI contrast scan and go to see neurologist in May for results and next step forward. The previous scan in January states bulging disks, scoliosis to the left side, and root nerve damage (or words to that effect)

latest symptoms that I have noticed the past few days is my finger tips feel really tender; my thumb is painful on the tip, and have intermittent pins and needles in it. It is sore to touch, and doesn’t feel like my thumb (if that makes sense).

I have had similar loss of sensation in all my toes and mid way up my feet for several years now, and it kind of feels like it is going to it all my fingers any time soon…it has already started in the thumb.

I wanted to see if anyone else has a similar problem.

Thanks

Bx

2

ps - also noticed while reading some posts on here that I am on most of the medication that you guys are, and still no relief from symptoms, which makes me wonder if I am at a much later stage of this condition, and without dx I am potentially going to get worse because not one neurologist appears to take my symptoms seriously - they merely only see what my previous medical history is/was and state ‘no it can’t be ms’. I always convince myself it can’t be ms but my relapses are getting more frequent, and very often leave me unable to walk, sit, stand, lie down - I am literally paralysed and unable to weight bare because I can’t feel my legs. I can’t touch my nose when I am like this because the moverment sends spasms right down through my body and in to my spine; I am left in this state needing personal care etc for 2/3 weeks.

So, after I have convinced myyself it’s not ms and it’s all in my head, I then have another symptom or relapse etc. I am the most positive person, and have to be because of all the other illness and previous dx of a serious life threatening illness, but I feel trapped and in a corner, with so much hesitation - almost like ms is a naughty word that cannot be spoen when I go to see neuro’s!

3

ps - also noticed while reading some posts on here that I am on most of the medication that you guys are, and still no relief from symptoms, which makes me wonder if I am at a much later stage of this condition, and without dx I am potentially going to get worse because not one neurologist appears to take my symptoms seriously - they merely only see what my previous medical history is/was and state ‘no it can’t be ms’. I always convince myself it can’t be ms but my relapses are getting more frequent, and very often leave me unable to walk, sit, stand, lie down - I am literally paralysed and unable to weight bare because I can’t feel my legs. I can’t touch my nose when I am like this because the moverment sends spasms right down through my body and in to my spine; I am left in this state needing personal care etc for 2/3 weeks.

So, after I have convinced myyself it’s not ms and it’s all in my head, I then have another symptom or relapse etc. I am the most positive person, and have to be because of all the other illness and previous dx of a serious life threatening illness, but I feel trapped and in a corner, with so much hesitation - almost like ms is a naughty word that cannot be spoen when I go to see neuro’s!

4

hi bee

you’re in a very difficult position

ok so they dont think its ms but what is it?

poll (boudicca) thought she had ms but it turns out she has some other condition which basically means that the neuro doesnt know!

you need answers.

see your gp and explain how difficult life is for you, maybe he/she can speak to your neuro

see your neuro and push for answers

meanwhile (((((((hugs)))))))

carole x

5

If whatever is causing your symptoms is causing nerve root damage then it’s not MS, but it’s absolutely not in your head either. The 2/3-week-long attacks of severe symptoms don’t sound very MS-like to me either as I would expect much more variability if it were MS. (But of course I don’t know for sure and I’m not a neuro.) Have you kept a diary to see if you can identify any triggers? And have you seen a neurosurgeon about your bulging discs? Are they fixable? As far as meds go, they may not be working because you have become tolerant to them, you are not on the right dose/med for you or they are not effective for your condition, whatever that is. The fact they aren’t working may in itself may be a useful clue as to what’s going on - what has your neuro suggested? (What meds are you on?) Sorry that I’ve asked questions rather than answered them! It’s good that your neuro is persevering in trying to find out what’s going on, but if this has been going on for years, perhaps it’s about time that he involved some other specialists too? I hope the latest scan gets you some answers in May. Karen x

6

Thanks Carole, and Karen.

To answer your questions: I have been pushing for many years now to find an answer to these symptoms. My previous history of arteriovenous malformation (AVM) in the brain (see profile) and have asked for the scans to determine if it could also now be a spinal AVM.

My GP ‘listens’ and then states “wait till you go back to see neuro”. I know his hands are tied, and he always states that he doesn’t want to question them because they know their job - so i’m kind of out there fighting for my own answers, and feeling like some hypocondriac in the process!

I was told the loss of sensation in feet/ toes etc is NOT AVM in my brain related…so what is it I have asked - their response “I don’t know”. I have been batted about from one neuro to another, and this next guy I see will probably get the brunt of the lot, and I am not leaving until I feel ‘heard’. I am going to ask for steroid injections, because I can’t do a thing with my spine problems, for example, I sat on a different chair yesterday, and in the night my back went in tio spasm again, leaving me waking up like I have done ten rounds with Tyson, and drank a litre of vodka (I don’t drink lol).

Rizzo - a friend of mine had very similar symptoms of being laid up for weeks, and it was MS. One time you would see her walking (sometimes) running to catch the kids from school, then the next week she would be using a stick and walking a snails pace in agony (that’s like me).

My symptoms do vary, and it is impossible to list them all (i’d be here all day) but they have been with me for many years, and i’ve been told not AVM related. Oh, I had a stroke and brain bleed back in 2005 - that’s how they discovered the AVM in my brain. I was told for years that it was a form of migraine, and to go and live my life. So again back then I felt like something wasn’t right and quite clearly there wasn’t. If they had listened to me and done a simple mRI they would have discovered it sooner, but it took a grand mal seizure behind the wheel of my car to get a scan, and because of it I am left with epilepsy.

My daughter is in her 3rd year at medical school, and currently doing neurology, so she has been a greatsupport for me, and I also know a fare bit about neuro because of all the ‘stuff’ I have been through.

I can’t wait for my appt in May. I am going to take someone with me, either that or I will ask his permission iof I can record the consultation. Either way I will know if it is spinal AVM or not, and if not then we need to move to the next step for ward for me.

Thanks for your replies, and for taking the time to read my dribble…

Much love

Bev

7

Thanks Carole, and Karen.

To answer your questions: I have been pushing for many years now to find an answer to these symptoms. My previous history of arteriovenous malformation (AVM) in the brain (see profile) and have asked for the scans to determine if it could also now be a spinal AVM.

My GP ‘listens’ and then states “wait till you go back to see neuro”. I know his hands are tied, and he always states that he doesn’t want to question them because they know their job - so i’m kind of out there fighting for my own answers, and feeling like some hypocondriac in the process!

I was told the loss of sensation in feet/ toes etc is NOT AVM in my brain related…so what is it I have asked - their response “I don’t know”. I have been batted about from one neuro to another, and this next guy I see will probably get the brunt of the lot, and I am not leaving until I feel ‘heard’. I am going to ask for steroid injections, because I can’t do a thing with my spine problems, for example, I sat on a different chair yesterday, and in the night my back went in tio spasm again, leaving me waking up like I have done ten rounds with Tyson, and drank a litre of vodka (I don’t drink lol).

Rizzo - a friend of mine had very similar symptoms of being laid up for weeks, and it was MS. One time you would see her walking (sometimes) running to catch the kids from school, then the next week she would be using a stick and walking a snails pace in agony (that’s like me).

My symptoms do vary, and it is impossible to list them all (i’d be here all day) but they have been with me for many years, and i’ve been told not AVM related. Oh, I had a stroke and brain bleed back in 2005 - that’s how they discovered the AVM in my brain. I was told for years that it was a form of migraine, and to go and live my life. So again back then I felt like something wasn’t right and quite clearly there wasn’t. If they had listened to me and done a simple mRI they would have discovered it sooner, but it took a grand mal seizure behind the wheel of my car to get a scan, and because of it I am left with epilepsy.

My daughter is in her 3rd year at medical school, and currently doing neurology, so she has been a greatsupport for me, and I also know a fare bit about neuro because of all the ‘stuff’ I have been through.

I can’t wait for my appt in May. I am going to take someone with me, either that or I will ask his permission iof I can record the consultation. Either way I will know if it is spinal AVM or not, and if not then we need to move to the next step for ward for me.

Thanks for your replies, and for taking the time to read my dribble…

Much love

Bev

8

Forgot to ask: Have either of you (or anyone else) had loss of sensation in your fingertips?

Bx

9

Forgot to ask: Have either of you (or anyone else) had loss of sensation in your fingertips?

Bx

10

I remember some of your history now you mention AVM. Sorry, my memory is sloooow sometimes! Yes, I’ve had loss of sensation in my fingertips. Numbness and changed sensation in fingers / hands is common in MS, but it does occur in lots of other things too. When I said that your 2/3-week attacks didn’t sound like MS, I meant that they didn’t sound like MS relapses which would normally be more variable (different durations, different symptoms). MS symptoms certainly fluctuate between relapses, but I think extreme fluctuation (e.g. from bedridden to able bodied) would be very unusual. Perhaps I’ve misunderstood how much your symptoms vary? Whatever’s going on, it sounds like you are long overdue some answers! I really hope this neuro can work it out. Kx

11

I hope so too!

One relapse, for example, has been a sudden onset of ‘lead legs’ - the only way I can describe it is if someone has injected anaesthetic and then placed heavy metal callipers on them. Very intense feeling, inability to feel any muscle; absaloutely no strength in my legs whatsoever.

I woke up this morning and my index finger has now lost sensation - making it a finger and thumb loss of sensation since last Friday…great!

Thanks for the reply. I will keep you updated once I see neuro.

Bev x

12

I hope so too!

One relapse, for example, has been a sudden onset of ‘lead legs’ - the only way I can describe it is if someone has injected anaesthetic and then placed heavy metal callipers on them. Very intense feeling, inability to feel any muscle; absaloutely no strength in my legs whatsoever.

I woke up this morning and my index finger has now lost sensation - making it a finger and thumb loss of sensation since last Friday…great!

Thanks for the reply. I will keep you updated once I see neuro.

Bev x