Aa
Advice on where to go next.
About a year ago I woke up one morning feeling dizzy with a subjective feeling of weakness and slight numbness on my left hand side... the numbness faded (things still seem sharper on my right side, but my left is not really numb anymore) over time the feeling of weakness has slowly manifested it's self accross onto the right side of my body, along with increased pain and discomfort with movement (i get like a muscle strain in my hands arms and legs, as if I had been doing heavy activity... I am also getting frequent cramp like sensations in my big leg muscles - sometimes it's painful, and sometimes it's just like my muscles are fighting me while walking leading to tendon strain pain - a couple of times I have been woken by painful cramps in my calf muscles).
The slight dizzy feeling has never gone away.
More recently the weakness has progressed to a measurable level in my right hand, and I have visible wasting/atrophy of the muscles of my right hand.
I struggle opening packets or tightly fastened jars (have to get my wife to do it - the opposite of the way it used to be)
I have seen a neurologist (Nerve & Muscle Specialty) and He has run various tests...
On neuro-exam I have hyper-reflexia on the right hand side, and some slight possible memory issues, my EMG & NCV are normal. MRI and CAT scan of brain are normal (except for a minor probable cyst and signs of infection in the sphenoid) - BP is normal, as is all my blood work (except for very slight elevated liver enzyme) - WBC count is good - toward the top of the normal range, negative for Lupus.
I've had tests of my circulation, heart and lungs (all normal - except for minor astma) - and have also been tested for arthritis - which too was negative.
I'm having an MRI of the cervical spine today (my request - have a family history of stenosis so wanted to be sure thats not a factor) - but the Neurologist suggested I should find a different neurologist with more of a speciality in the Central Nervous System.
What can I look for that's going to help me get to the right doctor? Are there any particular possible conditions that spring to mind, which perhaps I could look for in the list of things that a particular doctor specialises in?
What questions should I be asking when I find the right doctor?
Are there specific tests that I should be pushing for? - I've had MRI and CAT scan of the brain, EMG & NCV, multiple blood tests, and am now today going to have an MRI of the cervical spine - not much else though.
Anybody else out there that's experienced this sort of thing?
I've had different possible suggestions from well meaning friends - ALS it clearly is not (knew that before the EMG/NCV - I don't have the twitching, and also from what I've read, it wouldnt fit with the sudden onset of dizzyness etc)... MS - the MRI of my brain is clear - wouldnt it have to show up there to be MS? also would something in the brain cause hyper-reflexia? I know the stuff with my hand and the hyperflexia could be stenosis - but then does that fit with the dizzyness etc?
I just dont know where to go from here - want to make sure I'm going down the most logical path so as not to waste time seeing the "wrong" doctor - I need to get well... or at least, know what to expect so that I can plan accordingly.
Thankfully I have a physically unchallenging job (computer programmer) - but still, with my hand like this its becoming increasingly harder to work... I'm scared about what might happen if I become unable to work and still dont know whats wrong.
Regards,
Jamie
The slight dizzy feeling has never gone away.
More recently the weakness has progressed to a measurable level in my right hand, and I have visible wasting/atrophy of the muscles of my right hand.
I struggle opening packets or tightly fastened jars (have to get my wife to do it - the opposite of the way it used to be)
I have seen a neurologist (Nerve & Muscle Specialty) and He has run various tests...
On neuro-exam I have hyper-reflexia on the right hand side, and some slight possible memory issues, my EMG & NCV are normal. MRI and CAT scan of brain are normal (except for a minor probable cyst and signs of infection in the sphenoid) - BP is normal, as is all my blood work (except for very slight elevated liver enzyme) - WBC count is good - toward the top of the normal range, negative for Lupus.
I've had tests of my circulation, heart and lungs (all normal - except for minor astma) - and have also been tested for arthritis - which too was negative.
I'm having an MRI of the cervical spine today (my request - have a family history of stenosis so wanted to be sure thats not a factor) - but the Neurologist suggested I should find a different neurologist with more of a speciality in the Central Nervous System.
What can I look for that's going to help me get to the right doctor? Are there any particular possible conditions that spring to mind, which perhaps I could look for in the list of things that a particular doctor specialises in?
What questions should I be asking when I find the right doctor?
Are there specific tests that I should be pushing for? - I've had MRI and CAT scan of the brain, EMG & NCV, multiple blood tests, and am now today going to have an MRI of the cervical spine - not much else though.
Anybody else out there that's experienced this sort of thing?
I've had different possible suggestions from well meaning friends - ALS it clearly is not (knew that before the EMG/NCV - I don't have the twitching, and also from what I've read, it wouldnt fit with the sudden onset of dizzyness etc)... MS - the MRI of my brain is clear - wouldnt it have to show up there to be MS? also would something in the brain cause hyper-reflexia? I know the stuff with my hand and the hyperflexia could be stenosis - but then does that fit with the dizzyness etc?
I just dont know where to go from here - want to make sure I'm going down the most logical path so as not to waste time seeing the "wrong" doctor - I need to get well... or at least, know what to expect so that I can plan accordingly.
Thankfully I have a physically unchallenging job (computer programmer) - but still, with my hand like this its becoming increasingly harder to work... I'm scared about what might happen if I become unable to work and still dont know whats wrong.
Regards,
Jamie
You may want to look up Syringomyelia. It could explain many of your symptoms.
It has been 16 years since I was diagnosed with this, and I have had varying symptoms (including dizziness, shortness of breath, chest, abdominal, leg, arm and shoulder pain, hand and arm weakness, etc...).
You should have an MRI done WITH contract - this could provide more insight into the "bright spots" on your original MRI, and show definitively if this is in fact what you have.
The problem is finding a doctor that knows anything about this condition. I have been to MANY doctors for it and have only found two who knew what they were talking about. All others would just tell me that they doubted that the cyst in my spine was the cause of my problems. The two that knew anything about it were at the Lahey Clinic in Burlington, Mass.
You will probably be better off sticking with a university setting where they tend to see these rare disorders more often. And, most times if you go on their websites, you can get info on each specialist to see what specific disorders they specialize in.
Best of luck.
It has been 16 years since I was diagnosed with this, and I have had varying symptoms (including dizziness, shortness of breath, chest, abdominal, leg, arm and shoulder pain, hand and arm weakness, etc...).
You should have an MRI done WITH contract - this could provide more insight into the "bright spots" on your original MRI, and show definitively if this is in fact what you have.
The problem is finding a doctor that knows anything about this condition. I have been to MANY doctors for it and have only found two who knew what they were talking about. All others would just tell me that they doubted that the cyst in my spine was the cause of my problems. The two that knew anything about it were at the Lahey Clinic in Burlington, Mass.
You will probably be better off sticking with a university setting where they tend to see these rare disorders more often. And, most times if you go on their websites, you can get info on each specialist to see what specific disorders they specialize in.
Best of luck.
Oh I am sorry.....I misunderstood what u were asking.....
where do u live?......what about a CINE MRI...it checks the flow, no needles tho?......
I do have a list of neurologists and neurosurgeons....from a conference I attended this July.........depending on where u live, maybe one of the drs is close to u....I heard all of them speak..so I know a little about them and that the ASAP recommends them!
I know what u mean about wasting time on the wrong drs....been there done that too many times, plus I still have a co-pay and a out of pocket expense along with my deductibile.....
check out the ***@**** I hope they can help u.
"selma"
where do u live?......what about a CINE MRI...it checks the flow, no needles tho?......
I do have a list of neurologists and neurosurgeons....from a conference I attended this July.........depending on where u live, maybe one of the drs is close to u....I heard all of them speak..so I know a little about them and that the ASAP recommends them!
I know what u mean about wasting time on the wrong drs....been there done that too many times, plus I still have a co-pay and a out of pocket expense along with my deductibile.....
check out the ***@**** I hope they can help u.
"selma"
I knew what CNS means - It just doesnt help me in that beyond talking to the Dr, how am I supposed to know which type of Neurologist is specialised ENOUGH on the CNS - my current neurologist wants me to see someone MORE specialised on the CNS - I don't know what to look for to find one of those! How do I quantify that without wasting time seeing the wrong doc?
Yes I've been checked for Lymes and Lupus etc by blood test - I haven't had any CSF tests - given I've heard that spinal taps hurt a lot I'm not unhappy about that lol.
No bulging discs in my c-spine, so that at least is not the cause of my hand issues... will have to read about the other conditions before i can have an opinion on those.
Yes I've been checked for Lymes and Lupus etc by blood test - I haven't had any CSF tests - given I've heard that spinal taps hurt a lot I'm not unhappy about that lol.
No bulging discs in my c-spine, so that at least is not the cause of my hand issues... will have to read about the other conditions before i can have an opinion on those.
CNS= central nervous system.......maybe that is a good move!!
the only thing I can think of are issues I have......I had a MRI of my brain as well., how long ago was urs?.....I would not rule it out....also the rest of ur spine....there r so many other conditions that can cause the symptoms....bulging disks,....tethered cord, syringomyelia with a syrinx....with out the tests u can imagine almost nething, but it will not get u closer to a dx.
were u checked for lymes, and lupus?
And it appears the medical profession's mascot should be a snail!!!!.......
keep me posted
Godspeed
"selma"
the only thing I can think of are issues I have......I had a MRI of my brain as well., how long ago was urs?.....I would not rule it out....also the rest of ur spine....there r so many other conditions that can cause the symptoms....bulging disks,....tethered cord, syringomyelia with a syrinx....with out the tests u can imagine almost nething, but it will not get u closer to a dx.
were u checked for lymes, and lupus?
And it appears the medical profession's mascot should be a snail!!!!.......
keep me posted
Godspeed
"selma"
MRI was of cervical spine only - since main new symptom was hand wasting.
Doc was originally going to get me to see a different specialist - a neurologist with more of a CNS specialty - whatever that means, no idea what he was thinking...
But I specifically asked why we hadn't looked at possible spinal problems, given family history - and so he agreed to arrange a cervical MRI (on the basis that hand weakness and wasting related to the spine would show up there)
I'm really looking for ideas of where to go next - I really can't wait until I cant use my hand at all before getting some kind of progress on this... I'm starting to notice the muscle strain/tiredness/weakness in my left hand too now, and the small muscles near the base of my left pinky and the finger next to it have shrunk such that there are grooves below them where they used to be none.
I'm quite scared, any ideas/sugestions would be appreciated - at least I know it's not ALS - what with 2 normal EMGs/NCVs under my belt - but at the same time perhaps not knowing what to expect next is worse?
Doc was originally going to get me to see a different specialist - a neurologist with more of a CNS specialty - whatever that means, no idea what he was thinking...
But I specifically asked why we hadn't looked at possible spinal problems, given family history - and so he agreed to arrange a cervical MRI (on the basis that hand weakness and wasting related to the spine would show up there)
I'm really looking for ideas of where to go next - I really can't wait until I cant use my hand at all before getting some kind of progress on this... I'm starting to notice the muscle strain/tiredness/weakness in my left hand too now, and the small muscles near the base of my left pinky and the finger next to it have shrunk such that there are grooves below them where they used to be none.
I'm quite scared, any ideas/sugestions would be appreciated - at least I know it's not ALS - what with 2 normal EMGs/NCVs under my belt - but at the same time perhaps not knowing what to expect next is worse?
Jamie,
was the MRI of ur cervical spine only??......u have symptoms, I just wonder what ur dr is considering?....did u have ur consultation after the MRI?.......
so sorry this didn't get u closer to getting relief.
let me know if u find ne thing else .
Good luck
Godspeed
"selma"
was the MRI of ur cervical spine only??......u have symptoms, I just wonder what ur dr is considering?....did u have ur consultation after the MRI?.......
so sorry this didn't get u closer to getting relief.
let me know if u find ne thing else .
Good luck
Godspeed
"selma"
Well the MRI didnt really show much - no stenosis - there was loss of signal on ALL my disks in the scan, but no bulging - the report mentions some straightening of the cervical spine... doesnt mention much else - in the images i do see some bright spots on/in the spinal cord but these are not mentioned in the report - so for all i know those might be normal...
So, again, back to the drawing board trying to figure out what's causing this Wasting, weakness, dizzyness and fatigue...
If anyone has any ideas or sugggestions I'd appreciate it.
So, again, back to the drawing board trying to figure out what's causing this Wasting, weakness, dizzyness and fatigue...
If anyone has any ideas or sugggestions I'd appreciate it.
That's a new one to me...I was told they are moving toward using CD's.....maybe the film is cheaper....not sure!
let me know what u find out!!
Good luck
"selma"
let me know what u find out!!
Good luck
"selma"
Not gotten my report yet, but, Well, per your advice Selma I phoned up to request a copy of my MRI on CD from the scanning place - and I got a rather odd reaction...
The lady on the phone looked at my file and said "actually, it looks like you'll need them on films instead - you're taking it to a particular specialist?" - I explained I hadn't seen the report yet, and didn't know what was happening yet, but that I wanted a copy of my scan for a personal copy... she then responded again that I'd probably need it as a film, and that she'd order a copy printed for me, that they'd be ready in 24-48 hours, and she'd call me when they were ready...
I'm not sure why they would think I need the films rather than the CD - not sure if that means the scan showed nothing.... or that it showed something lol
Has anyone else had the experience of being told that they will need the films instead of the CD?
I guess I'll find out for sure when I am able to see the report or hear from my Neuro.
Regards,
Jamie
The lady on the phone looked at my file and said "actually, it looks like you'll need them on films instead - you're taking it to a particular specialist?" - I explained I hadn't seen the report yet, and didn't know what was happening yet, but that I wanted a copy of my scan for a personal copy... she then responded again that I'd probably need it as a film, and that she'd order a copy printed for me, that they'd be ready in 24-48 hours, and she'd call me when they were ready...
I'm not sure why they would think I need the films rather than the CD - not sure if that means the scan showed nothing.... or that it showed something lol
Has anyone else had the experience of being told that they will need the films instead of the CD?
I guess I'll find out for sure when I am able to see the report or hear from my Neuro.
Regards,
Jamie
been stuck deteriorating at step 1 for what seems like forever... lol
Hopefully the MRI shows something...
Hopefully the MRI shows something...
No contrast.
I know even with a diagnosis there will be further steps - but at least i could plan for those - right now i'm stuck at step 1.
I know even with a diagnosis there will be further steps - but at least i could plan for those - right now i'm stuck at step 1.
was it w/wo contrast??...I was told while inside...to lay still they were calling my dr and would get back to me ASAP...lol....sure take ur time I'm comfortable....lol.....but the radiologist was on hand an saw the herniation.....
and I am still waiting....but not inside the MRI machine...lol
"selma"
and I am still waiting....but not inside the MRI machine...lol
"selma"
Thanks... and I will as soon as I hear something... or nothing lol
It just struck me as odd that they told me it would be 15 minutes, but then it was more than double what they said... made me wonder...
Also the fact that she specificly said that I would be the next to be analysed lol.... made me think either:
1) She saw nothing on the scan and so knew it would be a quick report... or
2) She saw something on the scan and so was bumping up the priority
lol
Meh - I just want SOMETHING - I NEED some kind of diagnosis - for the sake of my sanity... even if it were not something treatable - at least I could build some expectations and begin to deal with it...
I'm sure everyone here can sympathise.
It just struck me as odd that they told me it would be 15 minutes, but then it was more than double what they said... made me wonder...
Also the fact that she specificly said that I would be the next to be analysed lol.... made me think either:
1) She saw nothing on the scan and so knew it would be a quick report... or
2) She saw something on the scan and so was bumping up the priority
lol
Meh - I just want SOMETHING - I NEED some kind of diagnosis - for the sake of my sanity... even if it were not something treatable - at least I could build some expectations and begin to deal with it...
I'm sure everyone here can sympathise.
...yeah time frame is about right...same that I was in neway....the radiologist reads the MRI anad will send report to ur dr....make sure and ask for a disk copy...keep for ur files.
Keep me posted!
Good luck
"selma"
Keep me posted!
Good luck
"selma"
Thanks... Both my mother and grandfather had Stenosis with DDD, and later developped spondylosis too.
So it would make sense to me - albeit that the neuro took a bit of convincing to order the test...
I just got back from the MRI - it was supposed to take 10-15 minutes (so the lady said when I went in) but then it ended up taking 35-40 minutes... just for my cervical spine... is that normal? She said my doc should have the results in 24 hours, and that my scan was going to be the very next one to go infront of the Dr who produces the reports (dont know if that's a good thing or a bad thing lol) - all in all seems like its going to be rather quick... I probably won't hear anything until next week though.
So it would make sense to me - albeit that the neuro took a bit of convincing to order the test...
I just got back from the MRI - it was supposed to take 10-15 minutes (so the lady said when I went in) but then it ended up taking 35-40 minutes... just for my cervical spine... is that normal? She said my doc should have the results in 24 hours, and that my scan was going to be the very next one to go infront of the Dr who produces the reports (dont know if that's a good thing or a bad thing lol) - all in all seems like its going to be rather quick... I probably won't hear anything until next week though.
.....I also have stinosis, cervical, and I get occasional dizziness.....have had bouts that fit vertigo...lasted 2 weeks....I loose balance, my gait is off,....I do have other conditions so the line is blurred ans well as my vision.....as to which symptom is from which condition.....but if u have stinosis, u could also have DDD, or bulding disks and even a herniated disk which could be the root of ur issues.
Good luck
Godspeed
"selma"
Good luck
Godspeed
"selma"
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