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Peripheral neuropathy and Brisbane neurologist recommendations


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#1 Paddlepop

Posted 18 November 2019 - 11:24 AM

Can anyone share their experience of peripheral neuropathy please?

DH and I suspect that he has it. It might explain the burning pain he feels in his hands and feet, how he senses any touch as burning hot, numb feelings in his arms and legs, back pain, and sweating. We thought it was due to his low testosterone level but there's more to it than that. He's in agony most days.

Also, can anyone recommend a good neurologist in Brisbane? PMs only; no names in the thread please as per EB's rules.

Thank you.

#2 BusbyWilkes

Posted 18 November 2019 - 12:23 PM

Not answering your question, but has complex regional pain syndrome (previously know as reflex sympathetic dystrophy) been explored at all?

#3 PrincessPeach

Posted 18 November 2019 - 01:20 PM

Sent you a PM.

Might not be good though, as im sure you are southside, these guys are northside.

#4 a letter to Elise.

Posted 18 November 2019 - 01:47 PM

I had some issues with peripheral neuropathy earlier this year. I had extensive testing done to get to the bottom of it, including brain and spinal MRI’s to rule out things like MS. I had a lot of pain in my feet and one hand, and often had pins and needles, and a sensation of having warm liquid spilled on me.

in my case, thankfully, it was due to squashed nerves in my spine, which could be helped by physio and regular exercise. Due to chronic pain, I had become too sedentary, with a very weak core and poor posture. I have to put a conscious effort to move regularly, and need to do physio exercises every day.

I initially ent on endep to manage the pain, so I could get stuck into the physio. I’ve had a significant improvement, and now only get a twinge here and there, mainly if I’ve been sitting around too much.

as my spritely neurology professor told me, if you are in pain, it is tempting not to move, but it is the worst thing you can possibly do. I do have to be careful with exercising due to hypermobility and wonky joints, but a good physio made a huge difference.

hopefully it’s a similar easy fix for your DH. (Well, easy in the sense that it wasn’t something more serious, but it did require a pretty mammoth effort to get into a good routine of movement)

#5 Paddlepop

Posted 18 November 2019 - 04:33 PM

BusbyWilkes: No, nothing neurological has been explored yet.

PrincessPeach: Northside, and inner west. I'll go check my PMs.

a letter to Elise: That's fantastic that you've had improvement. Sounds like the pain relief in order to be able to get moving was essential. DH is hating being so sedentary. He wants to get up and do stuff but is in so much pain.

Went to an osteopath today on recommendation of a GP. It certainly doesn't seem to be muscular from the examinations he did. Something was odd about his reflexes in his legs. DH is kind of scared because one of the tests indicated foot drop, which is a sign of MND. He worked in MND research for a number of years and interacted with MND patients. That disease scares the crap out of him.

#6 BusbyWilkes

Posted 18 November 2019 - 05:12 PM

Foot drop could also be caused by nerve compression, which my DH had (similar to Elise's comment). So may not be so awful.

The CRPS  fits some of symptoms you've mentioned previously. Can be caused by a relatively minor injury, which sensitises the nerves and creates a pain loop. Not the most scientific of explanations, but have a look and see what you think.

#7 a letter to Elise.

Posted 18 November 2019 - 06:41 PM

Nerve compression can affect the reflexes. Mine were not as good on the “bad” side.

try not to think of all the bad things it could be. Nerve compression is very common, and it can be extremely painful. Mine was so bad I even had a limp, and sometimes couldn’t feel the entire sole of my foot. I also had a headache for over 3 months. The neuro gave me some very simple stretches to relieve pain.

if he hasn’t recently  been tested, a glucose tolerance test is probably a good idea as well.

#8 Paddlepop

Posted 18 November 2019 - 06:58 PM

BW: CRPS doesn't seem to fit DH. It's all four extremities and limbs affected, along with his back and possibly bowel and bladder. Thank you for the suggestion.

a letter to Elise: Hopefully it's something manageable and not dire like MND. I think that DH has seen so many patients with it and MS that his mind can't help but go there. He hasn't had a GTT but his H1ABC or whatever the long term glucose test is was borderline for diabetes. High 5.7 or something, with the upper limit being 6 to tip over to diabetes. That worries me.

#9 onyxmoon

Posted 18 November 2019 - 07:01 PM

OP, do you have someone co-ordinating your DH's care like a good GP or Rheumatologist running the show?

With lots of complexities, vague symptoms and funny bloods - the more cooks looking after specific organ systems, sometimes the more diluted a picture gets. Occam's razor and all.

I only ask because I often see you approaching EB for advice and it seems that the burden of running the show is falling to you to find the unifying diagnosis which isn't fair to you. Find a doctor you trust and keep going back to them - makes the merry-go-round easier and stops key pieces of information from slipping through the cracks.

Rheumatologists are often pretty good at looking into unusual cases and I think you mentioned your DH sees one? They can start some investigations too to rule in/out the simple stuff...

#10 Paddlepop

Posted 18 November 2019 - 07:15 PM

onyxmoon: I wish we had a good GP or specialist looking after it all but we don't. It is all falling to DH and me to find out what the heck is happening to DH's health. Our brilliant GP retired about 4 years ago and quite simply no one measures up to her or even slightly compares to her. I'm trying to convince DH to try seeing a new GP at our clinic, or seeing a new GP at a different clinic that an EBer recommended to me. Get some fresh eyes on everything with no preconceptions about DH.

No one seems to care enough or be interested enough to try to dig down and work out what on earth is wrong with DH. They don't see him when he's really sick at home. They only see him when he's gone to the effort of going out to an appointment. They don't see how unwell he is afterwards or hear him groaning in pain in his sleep or seeing him covered in sweat from the shortest of walks in air conditioning or in agony from standing for a few minutes or today when he wet himself. The only results we've gotten are ones that we've pushed hard for, like a blood test for testosterone (very low) and vitamin D (deficient). They wouldn't have tested for them if we (me) hadn't insisted on them.

I'm so frustrated with it all. DH is so frustrated with it all. I'm tempted for us to go back to the rheumatologist and see what he thinks about it all. The referral is still valid. We're seeing a new endocrinologist in two weeks to manage DH's testosterone replacement therapy more carefully than his current endo. Pretty sure he needs injections rather than gel so that he won't keep forgetting to use it.

#11 born.a.girl

Posted 18 November 2019 - 07:18 PM

View PostPaddlepop, on 18 November 2019 - 06:58 PM, said:

BW: CRPS doesn't seem to fit DH. It's all four extremities and limbs affected, along with his back and possibly bowel and bladder. Thank you for the suggestion.

a letter to Elise: Hopefully it's something manageable and not dire like MND. I think that DH has seen so many patients with it and MS that his mind can't help but go there. He hasn't had a GTT but his H1ABC or whatever the long term glucose test is was borderline for diabetes. High 5.7 or something, with the upper limit being 6 to tip over to diabetes. That worries me.

6 is pre-diabetes.

If one thing is going wrong with your body,it can throw other things out.  I had absolutely perfect levels for years until I had high blood pressure, when I started landing pre-diabetes levels consistently (over 6).

Lo and behold, blood pressure cured, levels returned to 'good'.

I honestly wouldn't worry about it in isolation, but it wouldn't hurt to focus on the types of diet that help in that area. Damned frustrating when you're dealing with a number of things, I can tell you.  No one else suffers except me, though, if I don't do it, was the approach I took to that

#12 PrincessPeach

Posted 18 November 2019 - 07:23 PM

What about asking for a referral to a physician?

Dad had one of those co-ordinating his care in hospital recently & it was him who got to the bottom of the cause of his leg weakness.

#13 Paddlepop

Posted 18 November 2019 - 07:27 PM

PrincessPeach: If we could find a good one then yes, we'd see one. I'm put off after seeing a crappy one years ago for my CFS.

born.a.girl: Yep, he has high blood pressure. He's been on meds for that for at least a year now. He used to have perfect blood pressure. Even his pulse is faster now.

#14 onyxmoon

Posted 18 November 2019 - 07:31 PM

It's really hard and I know it can be awful feeling unheard, I hope you can find someone to support you all through this process.
You need a doctor that you trust co-ordinating all this - not least because someone needs to look at all the results together and look at the bigger picture. Without context, no one can give you good advice.

Princess Peach - A 'specialist' i.e. an 'ologist' is a physician - they all sit the same exams, then specialise out. You're talking about a general medicine physician who mostly work on hospital wards and rarely have private rooms outside (but some might in QLD - Gen Med has a strong presence there).

If I had vague symptoms that didn't make sense and I wanted a smart physician looking at it all, I would choose a Rheumatologist (ideally a good GP but can be hard to find), write down the symptoms over a 2 week period, get copies of all the prior tests and send them in to the receptionist prior and book a double appointment to discuss. Make sure that you are there with him so that they can get all the information.

Then follow up with the same person.
If they don't know, ask them for names of colleagues that they trust for advice. Most specialists are keen to refer out if a symptom/disease doesn't fit within their scope of practice.

#15 Paddlepop

Posted 18 November 2019 - 07:36 PM

onyxmoon: The rheumatologist used to be a GP, and he hasn't just worked in the city so he has a broad range of experience which was refreshing. He's the one that ordered the testosterone blood test after the GP refused it. He also wrote a letter back to the GP kicking them up the bum and telling them to go back to basics and find the cause of DH's fatigue and pain. Told them to start with basics like check his heart, lungs, etc.

#16 PrincessPeach

Posted 18 November 2019 - 07:36 PM

if you are happy with your rheumatologist, they might be able to give you a name or two.

#17 onyxmoon

Posted 18 November 2019 - 07:40 PM

Actually a quick google tells me that there's a few general medicine physicians working out of Greenslopes, Robina and the Mater, mostly in peri-operative medicine but certainly would be appropriate and qualified to take things further if things don't work out with the Rheum

#18 born.a.girl

Posted 18 November 2019 - 07:42 PM

I saw a physician for a few decades and it was fantastic.

#19 Tiger Print

Posted 18 November 2019 - 07:43 PM

Who is looking after you and your illnesses?  Can they take over your DH's care?

#20 born.a.girl

Posted 18 November 2019 - 07:44 PM

View PostPaddlepop, on 18 November 2019 - 07:27 PM, said:

PrincessPeach: If we could find a good one then yes, we'd see one. I'm put off after seeing a crappy one years ago for my CFS.

born.a.girl: Yep, he has high blood pressure. He's been on meds for that for at least a year now. He used to have perfect blood pressure. Even his pulse is faster now.

I didn't so much mean the blood pressure (mine was beyond severe, I was on two medications at full authority level plus one and sometimes two more), just that whatever condition someone has, may throw out other figures, and that certainly if he hopes to lose some weight in the future, I'd not be concerning myself with that diabetes figures.

#21 purplekitty

Posted 18 November 2019 - 07:48 PM

View Postonyxmoon, on 18 November 2019 - 07:31 PM, said:

Princess Peach - A 'specialist' i.e. an 'ologist' is a physician - they all sit the same exams, then specialise out. You're talking about a general medicine physician who mostly work on hospital wards and rarely have private rooms outside (but some might in QLD - Gen Med has a strong presence there).


Only if they are an FRACP.

There are quite a few General Physicians in Victoria in private practice as well.
It is becoming popular again as a training specialty since they have taken over post-surgical management from surgeons opening up job opportunities in hospitals.

#22 Soontobegran

Posted 19 November 2019 - 02:53 PM

I see a general physician in private practice where he shares rooms with 3 other general physicians.

You do not have to see a physician who has a 'speciality' . Being a general physician is a speciality in itself. They can be worth their weight in gold. They work in private practice and in the hospital.


PP...I think he needs a GTT as soon as possible. Just about all the signs and symptoms you mentioned can be attributed to Type 2 diabetes.

#23 Paddlepop

Posted 19 November 2019 - 03:30 PM

View PostTiger Print, on 18 November 2019 - 07:43 PM, said:

Who is looking after you and your illnesses?  Can they take over your DH's care?

Me, DH and a GP. I haven't bothered with a specialist since a really sh*tty General Physician years ago. There's no cure. My CFS is stable.

STBG: I doubt the GP would agree to a GTT because the HBA1C thing was within normal range. I know what you're saying about diabetes, fatigue and neuropathy being linked. What about starting to lose control with bowel and bladder though? Is that linked to diabetes?

We're seeing a new endocrinologist within a fortnight to manage DH's TRT so perhaps he'll have some ideas. I deliberately picked an older specialist close to retirement in the hopes that he might have better experience and a broader view of things. Within 20 minutes of booking the appointment DH got a text from them saying that they'd already tracked down all of his blood test results, his x-ray and CT results, and his brain MRI result. That was surprising. I had to play phone tag with the osteopath and GP clinic for nearly a fortnight to get the paperwork to the osteopath so DH could get a Medicare rebate for 5 appointments. Neither bothered to get it organised until one hour before the appointment.

#24 Soontobegran

Posted 19 November 2019 - 04:08 PM

PP the bladder/bowel incontinence can be caused by long term use of certain drugs, diabetes, nerve impingement such as cauda equina, constipation, infection etc.
He has a myriad of symptoms which may well just be from the  one cause.
A general physician would be my recommendation. Let him/her decide who else needs to be consulted.

ETA....Is he taking any opiate for pain? This can cause incontinence.

Edited by Soontobegran, 19 November 2019 - 04:09 PM.


#25 Paddlepop

Posted 19 November 2019 - 04:15 PM

STBG: No opiates. He's taking 200mg Celebrex per day for pain. He was taking 100mg as needed but the GP has told him to take 100mg x 2 per day now. The only other pain medication has been plain generic ibuprofen. Nothing stronger than that. I do wonder about the cauda equina nerve stuff considering the pain in his legs. Blood tests all indicate no infection, and to my knowledge he's not constipated. CT of his abdomen about a month ago certainly didn't show any constipation.

So, anyone have a recommendation for a General Physician (specialist,  not to be confused with a General Practitioner) in Brisbane?

Still needing neurologist recommendations too please.




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