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I finally managed to get a neuro referral! A new rheumatologist I saw referred me due to some numbness that I get. I am hoping to get alot out of this appt. Unfortunately, I am one of those people who clam up in the doctors office and let them walk all over me. I really want that to change. I need answers out of this appt. Any advice? Tests I should ask for and how to go about asking? I get really bad random muscle spasms, cognitive stuff really off, numbness, etc... I'm hoping for a MRI of brain and spine, and maybe some nerve testing. I guess I need help in standing my ground and getting something useful at this appt. Sorry for blabbering! Thanks in advance. 

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I write all of my symptoms down so I don't forget to mention any and I write down all questions I have. And I don't leave the office until everything has been addressed. Sometimes I warn the doc that I have a lot of questions so that they do not get stuck on any particular subject and waste time. 

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A problem with lists is that you list everything the neuro says it's psychological as you have a laundry list - but when you don't have a list they say why didn't you tell me about xyz. 

I take a list and start on the major stuff then bring up other stuff if it looks like it might be relevant.

Unfortunately I have 'issues' with my local hospital general neuros who keep sending me for hyper specialist neuro assessments who come back with there are neurological issues but these are not my specific corner. I end up no further on. Hopefully you hit a good neuro who can help you.

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I always, always have a list in numbered order of significance to me and don’t leave until they are all answered.  If it’s an important appointment or a new Dr my husband comes along.  I take pen and paper and write down what I need to do or important points to remember.  I suspect that you will get a routine neuro evaluation, recommendation for MRI and other tests given the reason for the referral.  hope that you have a great appointment, my neurologist diagnosed me and is still my go to for questions, even with a cardiologist trying to control BP/HR (they are in the same dys center).  

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I see my cardiologist next month, he is the only one who has shown interest in what beta blockers did to my nervous system. So I have already drafted the letter that I will just hand over for him to read, followed by a print out explaining the mechanism how beta blockers lower blood oxygen, and how low blood oxygen damages the Peripheral nervous system.

I think its easier for people to take in what is written down anyway, plus they can keep it to refer to again.

:-

" Soon as I went on beta blockers I described feeling like a "Drunk Zombie" and "Breathless" and as if my lungs didn't work properly. Re multiple genes that make me a slow metaboliser :- Nat 2 relates to not being able to clear beta blockers from my system and so I became overdosed and ended up semi-conscious after five weeks. Oxygen brought me around so the semi-conscious state was due to low blood oxygen.  Feeling like a drunk zombie must be due to low blood oxygen. What was happening to me when asleep whilst still on beta blockers?

Quite some time after coming off beta blockers, my blood oxygen was often measured at 85% for prolonged periods of the night, even when awake on the hospital monitor, so what was my blood oxygen when on beta blockers?

Effects of low blood oxygen?, Peripheral Neuropathy. Nerve damage.

Autonomic Neuropathy, many symptoms of this cleared up in April 2018, since then, my blood oxygen has never gone below 90% and I no longer have heart rate and blood pressure variability.  Still have some eating problems but these are much better as well though eating still makes me feel too exhausted to eat during the day.

Sensory Neuropathy seems to be getting worst, my skin feels numb, I keep feeling like I am being bitten, burning and tingling to mid thigh level now.

Motor Neuropathy seems to be getting worst, I drop things if I do not concentrate on holding them, my  walking is often unbalanced so people think I am drunk.

The brain fog, slightly drunk feeling has remained the same.

My deduction in lieu of nobody else bothering to deduct anything. :- I am sensitive to beta blockers and did not clear the days dosage before adding the next days. Beta blockers disrupted my Autonomic Nervous System resulting in low blood oxygen levels which have caused permanent damage to my nervous system which is heavily reliant on a good blood oxygen level".
 

 

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14 minutes ago, Peter Charlton said:

I see my cardiologist next month, he is the only one who has shown interest in what beta blockers did to my nervous system. So I have already drafted the letter that I will just hand over for him to read, followed by a print out explaining the mechanism how beta blockers lower blood oxygen, and how low blood oxygen damages the Peripheral nervous system.

I think its easier for people to take in what is written down anyway, plus they can keep it to refer to again.

:-

" Soon as I went on beta blockers I described feeling like a "Drunk Zombie" and "Breathless" and as if my lungs didn't work properly. Re multiple genes that make me a slow metaboliser :- Nat 2 relates to not being able to clear beta blockers from my system and so I became overdosed and ended up semi-conscious after five weeks. Oxygen brought me around so the semi-conscious state was due to low blood oxygen.  Feeling like a drunk zombie must be due to low blood oxygen. What was happening to me when asleep whilst still on beta blockers?

Quite some time after coming off beta blockers, my blood oxygen was often measured at 85% for prolonged periods of the night, even when awake on the hospital monitor, so what was my blood oxygen when on beta blockers?

Effects of low blood oxygen?, Peripheral Neuropathy. Nerve damage.

Autonomic Neuropathy, many symptoms of this cleared up in April 2018, since then, my blood oxygen has never gone below 90% and I no longer have heart rate and blood pressure variability.  Still have some eating problems but these are much better as well though eating still makes me feel too exhausted to eat during the day.

Sensory Neuropathy seems to be getting worst, my skin feels numb, I keep feeling like I am being bitten, burning and tingling to mid thigh level now.

Motor Neuropathy seems to be getting worst, I drop things if I do not concentrate on holding them, my  walking is often unbalanced so people think I am drunk.

The brain fog, slightly drunk feeling has remained the same.

My deduction in lieu of nobody else bothering to deduct anything. :- I am sensitive to beta blockers and did not clear the days dosage before adding the next days. Beta blockers disrupted my Autonomic Nervous System resulting in low blood oxygen levels which have caused permanent damage to my nervous system which is heavily reliant on a good blood oxygen level".
 

 

Have you had MRI of your spine and brain? I have a very bad back, cervical fusion in 2012, C4-6, having c2-4 done in a couple weeks and L4-5 done last year. I know chiari malformation can cause POTS and a CSF leak can mimic it too, but when you say you drop things, I had that before I had the C4-6 fusion. I still have neuropathy in my lower legs from the L4-5 fusion, but the drop foot improved a lot. I still have bad areas of my back though. L2-4 are bad and T1-2 has some disk herniation. Something to think about. Funny thing is, I lost a lot of weight over a year and half, 170lbs. Went from 382 to 211-212. I am 6'5, but the toll the excess weight on my body is something I cannot escape. I don't know why I got POTS, all this started with GI problems late last may and POTS hit around christmas. The only thing I can think of is a poorly treated H Pylori infection when I initially had GI symptoms. 

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On 3/13/2019 at 5:13 PM, JimL said:

Have you had MRI of your spine and brain? I have a very bad back, cervical fusion in 2012, C4-6, having c2-4 done in a couple weeks and L4-5 done last year. I know chiari malformation can cause POTS and a CSF leak can mimic it too, but when you say you drop things, I had that before I had the C4-6 fusion. I still have neuropathy in my lower legs from the L4-5 fusion, but the drop foot improved a lot. I still have bad areas of my back though. L2-4 are bad and T1-2 has some disk herniation. Something to think about. Funny thing is, I lost a lot of weight over a year and half, 170lbs. Went from 382 to 211-212. I am 6'5, but the toll the excess weight on my body is something I cannot escape. I don't know why I got POTS, all this started with GI problems late last may and POTS hit around christmas. The only thing I can think of is a poorly treated H Pylori infection when I initially had GI symptoms. 

I asked my primary GP for a brain scan a year or so back, he laughed, I avoid him now and found one of the Junior GPs to be much more helpful, she said to me, "We really must get you a brain scan", such has never materialised, I am guessing she got laughed at as well, money is more important than peoples health these days it seems in the NHS. Unless my cardiologist is incensed enough to see how wasteful the huge amount of money his department has spent on me, if I am left ill elsewhere, and puts pressure on my GPs, my only hope is with the good Dr Google. 

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17 minutes ago, Peter Charlton said:

I asked my primary GP for a brain scan a year or so back, he laughed, I avoid him now and found one of the Junior GPs to be much more helpful, she said to me, "We really must get you a brain scan", such has never materialised, I am guessing she got laughed at as well, money is more important than peoples health these days it seems in the NHS. Unless my cardiologist is incensed enough to see how wasteful the huge amount of money his department has spent on me, if I am left ill elsewhere, and puts pressure on my GPs, my only hope is with the good Dr Google. 

It's getting that way in the US. Insurance companies have waiting periods for MRI's and CTs. My spinal chord was funny compressed at L4-5 and BCBS had a 2 week waiting period for surgery approval. When money comes first, we lose. 

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2 hours ago, Peter Charlton said:

I asked my primary GP for a brain scan a year or so back, he laughed, I avoid him now and found one of the Junior GPs to be much more helpful, she said to me, "We really must get you a brain scan", such has never materialised

Unfortunately MRI only shows so much, and often in neurological problems shows very little. In my case I have had repeated MRI's  ( 10 in the last 3 years) and they have only shown expected damage and no explanations for my problems. Unless there is a largeish physical problem it is unlikely to help, but it is worth checking even so.

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