Aa
What is my neuro on?
Hey fellow limbolanders
I need some input and support here!
I had a chat with my young GP today. She's a good guy I think, but doesn't seem to be very clued up. However, she is the doctor who literally put her fingers on the problem and gave it it's very first official name, 'cervical spondylosis' - just by manual exam and LISTENING to the sx. When the xrays came back there was much more. So, kudos to her. A referral to neuro was immediately recommended by the radiologist.
My GP said today that she'd had a letter from neuro to say that he couldn't see what could be causing my sx....
GIVE ME STRENGTH!!
Let's look at the facts:
- he gave me the fastest neuro exam in history - all of 7mins.
- he hasn't seen the xrays - in fact, he dismissed their validity even...
- the MRI/MRA hasn't been done yet
- visual field tests not bacl
YET he's writing formally to say that he 'can't understand what could be causing the problems'. Plus didn't mention that he'd ordered MR images.
What are these people on?
Logically he cannot make any assessment until MRI/MRAs and VF test have been interpreted. But it seems to me that writing to my GP in such a way introduces or perpetuates large doubts and not only undermines my credibility (and health) but also undermines my GP's judgement and accurate diagnosis so far (as shown by the xrays).
It also thoroughly demoralises me and mine - it shows us just how far we have to go in getting an accurate diagnosis and proper treatment.
I say again, what the hell are these neurologists on? Do they just hate women?
This has been the story throughout. 'Oh yes, we see a bit of this and that (e.g. face drop, pronator drift, distractibility/lack of concentration, cerebral oedema, optical disc skewed, no reflexes there, jumpy leg here, sleep apnoea, oxygen depletion, the type of blood that clogs vessels and causes occlusions, loss of consciousness, neck bones out of alignment, girt big bits of bone growing out of them in the wrong places, funny stuff going on in them there EEGs, numb bits, and who knows what else) but it's nothing. Bog off!'
Meanwhile, I cannot sit in an upright chair now for more than 30mins without getting numb face, arm, foot, headache/neckache, blurry eyesight and stuff. I have to lie a certain way to sleep otherwise something sticks in my throat and impedes breathing. I have to recline all the time if I want to feel normal - even then I have to be careful because half-an-inch that way and the mice in my leg start racing around, half-an-inch that way and the buzzing in my ear is beyond distracting. A few millimeters in THAT direction and my top neck bone goes out of joint and I have LOADS of fun (not) wrigging and coaxing it back into place before the crashing headache starts. You all know the panoply of variegated signs and symptoms...
I've actually been 'doing a Mrs A' (!) - minimising my attention to all sx and concentrating on lots of other things. And then I move suddenly, for instance, I get the familiar sensation of an icy knife going up my neck into my head or across my shoulders or down my thoracic spine...or mice going mad in my leg, or pee myself or flashes of light at the sides of my vision...
Is it time to go and see a private someone? Who is it that deals with bones? Would that be better than a clueless neuro?
Whoever, whatever, I am so tired of this...I have come to loathe doctors...I am terrified of them - they're so care less..they just don't care.
sniff......blubbb
sammxx
I need some input and support here!
I had a chat with my young GP today. She's a good guy I think, but doesn't seem to be very clued up. However, she is the doctor who literally put her fingers on the problem and gave it it's very first official name, 'cervical spondylosis' - just by manual exam and LISTENING to the sx. When the xrays came back there was much more. So, kudos to her. A referral to neuro was immediately recommended by the radiologist.
My GP said today that she'd had a letter from neuro to say that he couldn't see what could be causing my sx....
GIVE ME STRENGTH!!
Let's look at the facts:
- he gave me the fastest neuro exam in history - all of 7mins.
- he hasn't seen the xrays - in fact, he dismissed their validity even...
- the MRI/MRA hasn't been done yet
- visual field tests not bacl
YET he's writing formally to say that he 'can't understand what could be causing the problems'. Plus didn't mention that he'd ordered MR images.
What are these people on?
Logically he cannot make any assessment until MRI/MRAs and VF test have been interpreted. But it seems to me that writing to my GP in such a way introduces or perpetuates large doubts and not only undermines my credibility (and health) but also undermines my GP's judgement and accurate diagnosis so far (as shown by the xrays).
It also thoroughly demoralises me and mine - it shows us just how far we have to go in getting an accurate diagnosis and proper treatment.
I say again, what the hell are these neurologists on? Do they just hate women?
This has been the story throughout. 'Oh yes, we see a bit of this and that (e.g. face drop, pronator drift, distractibility/lack of concentration, cerebral oedema, optical disc skewed, no reflexes there, jumpy leg here, sleep apnoea, oxygen depletion, the type of blood that clogs vessels and causes occlusions, loss of consciousness, neck bones out of alignment, girt big bits of bone growing out of them in the wrong places, funny stuff going on in them there EEGs, numb bits, and who knows what else) but it's nothing. Bog off!'
Meanwhile, I cannot sit in an upright chair now for more than 30mins without getting numb face, arm, foot, headache/neckache, blurry eyesight and stuff. I have to lie a certain way to sleep otherwise something sticks in my throat and impedes breathing. I have to recline all the time if I want to feel normal - even then I have to be careful because half-an-inch that way and the mice in my leg start racing around, half-an-inch that way and the buzzing in my ear is beyond distracting. A few millimeters in THAT direction and my top neck bone goes out of joint and I have LOADS of fun (not) wrigging and coaxing it back into place before the crashing headache starts. You all know the panoply of variegated signs and symptoms...
I've actually been 'doing a Mrs A' (!) - minimising my attention to all sx and concentrating on lots of other things. And then I move suddenly, for instance, I get the familiar sensation of an icy knife going up my neck into my head or across my shoulders or down my thoracic spine...or mice going mad in my leg, or pee myself or flashes of light at the sides of my vision...
Is it time to go and see a private someone? Who is it that deals with bones? Would that be better than a clueless neuro?
Whoever, whatever, I am so tired of this...I have come to loathe doctors...I am terrified of them - they're so care less..they just don't care.
sniff......blubbb
sammxx
Hi guys
Some good news...my missing scans magically turned up. (I'm sure it was nothing at all to do with the potential for the Information Commissioner investigating their data security arrangements...)
Also had my latest scans.The whole lot together paint a sorry picture of 'Omigod! How did you ever miss that!!!? Never mind, I'm sure they'll all get a chance to explain.
I believe that we've found the reasons for the stroke-type attack. YAAAY. Now all the neuro needs to do is agree with me (and preferably avoid the 's' word - urrgh, surgery).
It comes to something when you have to investigate and diagnose yourself as well as actually having to have the blinking disease! Tch.
But, like Maria so rightly describes above, this is how it works over here. 'Two X chromosomes? There's the door to the self-service DIY section! Byeeeee!!'
Some good news...my missing scans magically turned up. (I'm sure it was nothing at all to do with the potential for the Information Commissioner investigating their data security arrangements...)
Also had my latest scans.The whole lot together paint a sorry picture of 'Omigod! How did you ever miss that!!!? Never mind, I'm sure they'll all get a chance to explain.
I believe that we've found the reasons for the stroke-type attack. YAAAY. Now all the neuro needs to do is agree with me (and preferably avoid the 's' word - urrgh, surgery).
It comes to something when you have to investigate and diagnose yourself as well as actually having to have the blinking disease! Tch.
But, like Maria so rightly describes above, this is how it works over here. 'Two X chromosomes? There's the door to the self-service DIY section! Byeeeee!!'
I voted for the Shrooms..
Because they dont make you totally incoherent..But alter enough to still make you stupid...
I plead the 5th on how I know.....LOL
XXXXXTheresa
Because they dont make you totally incoherent..But alter enough to still make you stupid...
I plead the 5th on how I know.....LOL
XXXXXTheresa
Hi bins well IF you have classic MS stuff going on and you are about 30ish then even in the UK you get diagnosed quickly even on the NHS.
The problem starts when your symptoms are classic but your tests are not. The neurologists are NOT allowed to give you a diagnosis unless it is fully confirmed by the McDonald criteria (which at first i thought was the name for take away food lol). The NHS is very strict in this. My neurologist even told me he gets FRUSTRATED by the confines. I think that is why he keeps going with me as he knows what it is he just cant say.
Let me explain to you the difference between private and NHS.
Well when I started my journey I was told i needed to see the neurologist. OK fine. The appointment was 6 months ahead.......As i was working at the time I thought what the heck I cant possibly wait that long i wanted to get better and get back to work (silly me).
So I rang the hospital where the appointment was and spoke to the bookings office and they said that the best way was to pay privately to see the same neurologist. So this was on the Thursday. They gave me his number I rang spoke to his secretary and had an appointment by the MONDAY. I kid you not and it cost me 80.00 for 25 mins..
So off i go and see him. He said I needed MRI which i could have on the NHS as they were expensive otherwise.
I got the appointment for four months away. WHAT. So I did some research and found a place who did them really cheap 190.00 each. I had to have 3 sections. I rang the neuro secretary and she organised it for me. AGAIN I HAD TO WAIT THREE WHOLE DAYS instead of four months. NOW if i had waited on the NHS I would have waited 10 months to just get as far as the MRI. It took my daughter SIX months to get her results.
Then the failure as I just didnt have anymore money to pay for tests as then i needed loads more and they were just too much. Overall i think i have waited about 2 years for tests to come back.
Now my brother got sick he went private with a neurologist and he got diagnosed 3 days later with dysautomia. I know people still waiting after years for this diagnosis.
This country is nuts.
IF you can pay you get seen immediately and the sad thing is it is by the same specialist you would see on our NHS.
IF I had the proper health insurance I would have been seen and all the tests done in a week and that is the saddest thing for me.
The problem starts when your symptoms are classic but your tests are not. The neurologists are NOT allowed to give you a diagnosis unless it is fully confirmed by the McDonald criteria (which at first i thought was the name for take away food lol). The NHS is very strict in this. My neurologist even told me he gets FRUSTRATED by the confines. I think that is why he keeps going with me as he knows what it is he just cant say.
Let me explain to you the difference between private and NHS.
Well when I started my journey I was told i needed to see the neurologist. OK fine. The appointment was 6 months ahead.......As i was working at the time I thought what the heck I cant possibly wait that long i wanted to get better and get back to work (silly me).
So I rang the hospital where the appointment was and spoke to the bookings office and they said that the best way was to pay privately to see the same neurologist. So this was on the Thursday. They gave me his number I rang spoke to his secretary and had an appointment by the MONDAY. I kid you not and it cost me 80.00 for 25 mins..
So off i go and see him. He said I needed MRI which i could have on the NHS as they were expensive otherwise.
I got the appointment for four months away. WHAT. So I did some research and found a place who did them really cheap 190.00 each. I had to have 3 sections. I rang the neuro secretary and she organised it for me. AGAIN I HAD TO WAIT THREE WHOLE DAYS instead of four months. NOW if i had waited on the NHS I would have waited 10 months to just get as far as the MRI. It took my daughter SIX months to get her results.
Then the failure as I just didnt have anymore money to pay for tests as then i needed loads more and they were just too much. Overall i think i have waited about 2 years for tests to come back.
Now my brother got sick he went private with a neurologist and he got diagnosed 3 days later with dysautomia. I know people still waiting after years for this diagnosis.
This country is nuts.
IF you can pay you get seen immediately and the sad thing is it is by the same specialist you would see on our NHS.
IF I had the proper health insurance I would have been seen and all the tests done in a week and that is the saddest thing for me.
Hi all you lovely people!
Thanks so much for. your thoughts and kind wishes. I'm not sure you know how much you're helping...xx
I'm stratospheric with anxiety, fear and very cross today. Yet more nonsensical stuff has come out and it's like we're running around trying to herd cats here now. (When I say 'nonsensical', it could mean anything along a line from 'sheer ADHD/didn't listen/didn't care' to 'total incompetence' to 'blatant refusal to acknowledge the clinical facts'.
One of the least additions to the nonsense is we've discovered that not only has another scan gone missing but they've overcharged us massively for those that they are burning onto CD for us. There's a national tariff , and this lot here have increased their bill to me by up to about 600% or even more above that.
Whatever can one think about all this?
I'm sorry, Maria...don't want to get you started! (Oh, ok then, let it rip! You know you'll feel better!! ) But I guess that another good reason to write about these things is that other people can read it and know that it's not just happening to them, and they're not going round the bend.
The GP's dx was a partial but accurate one (kudos!). There's a lot more on the plain film xrays. Yet the neuro, who wasn't interested/hasn't seen the xrays and has no test results to go on, says he sees nothing. This is what makes me think he's on something or other. This is just not rational.
Haha suzsibs, aliens have invaded indeed...my friend and I were talking about exactly this earlier on. He's a retired Dr and he is appalled at what he sees going on now in the organisation he devoted his life to. He actually said he wondered at which point did all these health 'care' folks sell their souls and become 'the living dead' without souls.
Aciiiiiiid!!!! Yes, jibby, maybe they're all mostly at the meds cabinet...? Stranger things etc. (There was an NHS prof of pharmacology, a gov adviser, got sent to jail for 3yrs yesterday. The police raided his secret pad in London and found it filled with all sorts of licit and illicit drugs and exotic equipment. He'd defrauded the NHS of £150K to pay for it all and his poor wife and family knew nothing at all about his unsavoury secret life...perhaps there are many more where he came from? Who knows.?)
Wonder if my Mr Nice Guy neuro may have just been nice because he was off his face..E anyone?!
Nice find, binx. I bet you wondered what the blazes us Brit limbolanders were maundering on about...until you got to the punch line! Going private in the UK: hugely expensive if a batch of MRIs and other tests are needed (maybe £1500-2000 for me for the first round). NHS docs do not have to accept the opinion of a private specialist if you need to go NHS for ongoing meds/treatment. So they often make you join the back of the queue again. This is crazy, but this is how it is. I got a private opinion at one stage, NHS docs not only refused to look at it for a year but later distorted it to make it back them up. They simply ignored me when I pointed out they'd got it wrong. They rule.
It is very frightening. The lady with MS who got a superquick dx was fortunate that her NHS people accepted the dx (or I'm assuming they did.)
But my son said today that we're going to have to go private in the future. As I look around it seems that all my friends are now. So much for socialised healthcare and equality etc.
Now I am worn out after today's revelations and sorting out the work we're going to have to do to address all the mess. It means so much that you good people are so supportive and here...thank you xxxxsamm
Thanks so much for. your thoughts and kind wishes. I'm not sure you know how much you're helping...xx
I'm stratospheric with anxiety, fear and very cross today. Yet more nonsensical stuff has come out and it's like we're running around trying to herd cats here now. (When I say 'nonsensical', it could mean anything along a line from 'sheer ADHD/didn't listen/didn't care' to 'total incompetence' to 'blatant refusal to acknowledge the clinical facts'.
One of the least additions to the nonsense is we've discovered that not only has another scan gone missing but they've overcharged us massively for those that they are burning onto CD for us. There's a national tariff , and this lot here have increased their bill to me by up to about 600% or even more above that.
Whatever can one think about all this?
I'm sorry, Maria...don't want to get you started! (Oh, ok then, let it rip! You know you'll feel better!! ) But I guess that another good reason to write about these things is that other people can read it and know that it's not just happening to them, and they're not going round the bend.
The GP's dx was a partial but accurate one (kudos!). There's a lot more on the plain film xrays. Yet the neuro, who wasn't interested/hasn't seen the xrays and has no test results to go on, says he sees nothing. This is what makes me think he's on something or other. This is just not rational.
Haha suzsibs, aliens have invaded indeed...my friend and I were talking about exactly this earlier on. He's a retired Dr and he is appalled at what he sees going on now in the organisation he devoted his life to. He actually said he wondered at which point did all these health 'care' folks sell their souls and become 'the living dead' without souls.
Aciiiiiiid!!!! Yes, jibby, maybe they're all mostly at the meds cabinet...? Stranger things etc. (There was an NHS prof of pharmacology, a gov adviser, got sent to jail for 3yrs yesterday. The police raided his secret pad in London and found it filled with all sorts of licit and illicit drugs and exotic equipment. He'd defrauded the NHS of £150K to pay for it all and his poor wife and family knew nothing at all about his unsavoury secret life...perhaps there are many more where he came from? Who knows.?)
Wonder if my Mr Nice Guy neuro may have just been nice because he was off his face..E anyone?!
Nice find, binx. I bet you wondered what the blazes us Brit limbolanders were maundering on about...until you got to the punch line! Going private in the UK: hugely expensive if a batch of MRIs and other tests are needed (maybe £1500-2000 for me for the first round). NHS docs do not have to accept the opinion of a private specialist if you need to go NHS for ongoing meds/treatment. So they often make you join the back of the queue again. This is crazy, but this is how it is. I got a private opinion at one stage, NHS docs not only refused to look at it for a year but later distorted it to make it back them up. They simply ignored me when I pointed out they'd got it wrong. They rule.
It is very frightening. The lady with MS who got a superquick dx was fortunate that her NHS people accepted the dx (or I'm assuming they did.)
But my son said today that we're going to have to go private in the future. As I look around it seems that all my friends are now. So much for socialised healthcare and equality etc.
Now I am worn out after today's revelations and sorting out the work we're going to have to do to address all the mess. It means so much that you good people are so supportive and here...thank you xxxxsamm
Hi...
It has to be "Acid".... What the heck else could explain it???
I am so sorry you are going through this..... Maybe binx suggestion of someone private (if possible) is an option...
Sending you lots of love happy thoughts
Jibs
It has to be "Acid".... What the heck else could explain it???
I am so sorry you are going through this..... Maybe binx suggestion of someone private (if possible) is an option...
Sending you lots of love happy thoughts
Jibs
hi there, sam,
i was poking around in the MS forum the other day and read a post by a woman in the UK who described her expedited neuro workup and ultimate MS dx. the way she described it all surprised me after having read everything you, maria, sue and other NHS victims have described in this forum.
then i got to the bottom of her post and she explained that the reason she had gotten everything diagnosed so quickly was because she had paid for a private neuro consultant.
i don't know if that's a viable option for you, but if it is, maybe you should give it a whirl?
just my two-cents' worth.
hope you are doing okay.
best wishes,
binx
i was poking around in the MS forum the other day and read a post by a woman in the UK who described her expedited neuro workup and ultimate MS dx. the way she described it all surprised me after having read everything you, maria, sue and other NHS victims have described in this forum.
then i got to the bottom of her post and she explained that the reason she had gotten everything diagnosed so quickly was because she had paid for a private neuro consultant.
i don't know if that's a viable option for you, but if it is, maybe you should give it a whirl?
just my two-cents' worth.
hope you are doing okay.
best wishes,
binx
I think the NHS has employed aliens as neurologists they are definitely from a different planet than we are.
Mine sacked me for complaining about a 5 month wait for tests... sorry who was in the wrong me or him?
POMPOUS GIT.
Fingers crossed you and the rest of us find a human GP, NEURO OR OTHER to deal with and we get some results.
All the best
Sue
Mine sacked me for complaining about a 5 month wait for tests... sorry who was in the wrong me or him?
POMPOUS GIT.
Fingers crossed you and the rest of us find a human GP, NEURO OR OTHER to deal with and we get some results.
All the best
Sue
Hi Sam well dont get me started LOL.
Well perhaps he is just confirming the SX are not neurological?
IF your GP thinks its cervical spondylosis wouldnt you see an orthopedic surgeon and physio. My care worker Ruth her husband has this quite bad even though he still works. He has special injections to give relief and physio as he has to do gentle neck exercises which apparently help.
He sees an orthopedic specialist.
Or are you seeing the neuro still because of the stroke?
It never ends does it. See my devics was negative i knew that before they came in. One only has to do the research to see i dont have that.
I believe strongly now if we are not CLASSIC cases then dont bother to apply simples.
Big hugs mariaxxx
Well perhaps he is just confirming the SX are not neurological?
IF your GP thinks its cervical spondylosis wouldnt you see an orthopedic surgeon and physio. My care worker Ruth her husband has this quite bad even though he still works. He has special injections to give relief and physio as he has to do gentle neck exercises which apparently help.
He sees an orthopedic specialist.
Or are you seeing the neuro still because of the stroke?
It never ends does it. See my devics was negative i knew that before they came in. One only has to do the research to see i dont have that.
I believe strongly now if we are not CLASSIC cases then dont bother to apply simples.
Big hugs mariaxxx
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