Neuro at last

Hi all.well I’ve finally got my neuro appointment,Monday at oxford,private of course,gp was bloody useless couldn’t wait to pass me back to my professor,he was so kind and after consulting with neuro colleagues he agreed to refer me on their advice.

I’m pretty nervous about this,are the symtoms I get as a result of the head injury or as a result of pernicious anemia not being treated for so many years.

My pins and needles behave as long as I inject every other day but if I miss or try to prolong the gap they come back with a vengeance,do I tell him this?My burning feet has now progressed up to my knees and I just seem to have pain all the time.

My balance problems are still ongoing although not as severe but still bad enough that I’ve had to install night lights in case I wake up and need the loo,it’s like I’m blind in the dark I fall everywhere trying to get to the door handle ,I have no co ordination so the nightlight has made a huge difference.I still can’t close my eyes and balance that’s still as bad as ever.I still have severe blinding headaches with that one side of my head that was bashed in still being very tender to touch or maybe just over sensitive,I’m scared not knowing what to expect I guess.

I’m actually dreading this appointment but excited at the same time hoping to get answers,am I expecting too much?

Anyway this guys costing me 300 quid so I’m expecting to get my money’s worth I’m just a bit worried about alienating him if I say I self inject every other day or I’m awful with symptoms.

Any tips are always most appreciated x

[Nackapan]

Try and let the consultant take the lead. It gets too overwhelming otherwise

.

List your 5 worst symptoms.

They not to raises expectations.

It I think will be s process of elimination.

They may order more MRI scans.

There first purposes is to rule out anything 'sinister'(their words)

I've seen 3 different neurologists. Two private . All had different theories;

One post concussion syndrome b12 irrelevant and told addicted to it.

One b12 damage no quick fix. Offered propronol. Told to keep up b12 levels.

One variant migraines. With a vestibular disturbance .

All asked about anxiety.

I talk far to much especially when nervous.

Try and think what you want from them.

I was hoping for an explanation of symptoms but got theories

Nerve testing perhaps.

Otherwise if things are ruled out its treating symptoms.

With me it was back to Gp . She recieved a letter that didnt reflect consult on two occasions. She actually believed me and said they probably thinked of things afterwards??

Make sure you are copied into the letter sent to G.p.

I really hope it goes okay and you get some answers.

Also a treatment plan .

Please let us know how it goes.

T C

[Hidden in reply to Nackapan]

Hi Nackapan I hope you are well and enjoying the new arrival?Good advice that I will follow thank you,I usually suffer from either verbal diahorrea or I just clam up and forget everything so it usually makes for an interesting appointment lol.ty x

[Nackapan in reply to Hidden]

Im. Struggling too at present. Constant head pains. Nausea ect No contact with granddaughter. Even Christmas got cancelled. Tier 4 then lockdown. Very difficult for everyone.

Take care

Hope your appointment goes well

[Hidden in reply to Nackapan]

I’m sorry to hear that Nackapan that’s very sad for you.I went over in the car on Xmas day and we just blew kisses to the grandchildren,my great grandaughter wanted hugs so as usual I left feeling teary,it’s such crap in our old age what a legacy to leave eh?Take care and stay positive and thank you xx

[fbirder]

Your balance problems in the dark are very familiar.

I've got a set of Philips Hue lights and a motion detector. I't set up so that motion between 08:00 and 23:00 switches the lights on at half brightness. No motion for 4 minutes switches them off. Between 23:00 and 08:00 motion switches the lights on a deep, dim, red (picture emergency lighting in an old submariners film). It's just enough for me to be ale to walk to the bathroom.

Not cheap, but it does other things as well.

[Hidden in reply to fbirder]

Yes that’s great mines is a dusk till dawn light it does help

[fbirder]

I would guess the headaches aren't related to the nerve problems in the legs, but to the earlier injury.

I hope he can figure out what's wrong.

Are you on any meds for the burning pain?

[Hidden in reply to fbirder]

Hi fbirder thank you for responding.no they’ve just pretty much ignored most of the symptoms I have it’s only because I keep pushing trying various routes to get to the type of consultant I needed,it’s been a slog because of the brain fog and head injury that I suffered before discovering b12 deficiency and getting the help I needed here.The pain is definately increased despite the eod injections that I do and the burning is really getting to me my knees are so painful I’m struggling with the stairs now.The HPylori did such a job on my gut I can’t even take a paracetamol now so I dnt know what he will suggest,something I hope.

[fbirder in reply to Hidden]

Paracetamol does nothing at all for my pain. I take gabapentin, 300 mg in with breakfast and lunch, 600 mg with dinner. If I forget that evening one then I'm in agony in the morning.

You should be on gabapentin, pregabalin or amitriptyline.

[Hidden in reply to fbirder]

Is your tummy ok with these meds? I will mention to the neuro and see what kind of response I get thank you.It’s good that I have members here I can bounce things off as I always get good advice which has helped me so much in this journey, for want of a better word.So far my list for him is starting to take shape in my head I know not to witter on now as I tend to go off track so basically try and focus on the things that disturb me most and see if he can help me resolve them or cope better daily,especially with the burning pain.ty again.

[fbirder in reply to Hidden]

My gut is normally pretty tolerant of all meds. It's only metformin that has ever been a problem.

[Hidden in reply to fbirder]

I can’t seem to tolerate anything I think my gut needs to be built up again but I have to be honest my diet is not good right now,I’m stuck in so much on my own then I eat rubbish so that’s not helping me.Never mind I’ll try and do better tomorrow.Thank you for the advice it’s always appreciated.stay well

[Parksy]

My symptoms are pretty similar to yours and my go surgery is useless on a whole new level of stupidity. The practice was taken over by a private company who literally messed up the whole surgery. It failed all its quality care commission standards so was taken over and is now run by 2 locum Drs who aren’t interested at all. So I paid to see a functional practitioner. She told me to cut out dairy and gluten or if I couldn’t do both cut gluten out totally to begin with. Wow that was epic at the beginning I struggled so badly. But I have seen improvements. Would it be worth trying to do the same? Like a two pronged attack alongside seeing the neuro? Can you relate all the symptoms starting soon after your head injury?

[Hidden in reply to Parksy]

Good morning Parksy thank you for responding.I have been gluten free as much as possible,we all know how easily it slips through,and I’m lactose free and I don’t really eat much dairy no eggs etc.I’ve had to do that for a long time because I suffer from recurring HPylori so my gut has has a bashing over the years between that and p.a.I honestly don’t know if these things happened before or after the head injury as it also affected my memory it’s a question I dread being asked as I struggle so much with it.is it the head injury or is it the p.a that causes the memory loss ive no idea because I still have shocking episodes of memory loss ,my long term memory is good but not short term and I still struggle with recall.I have my phone calendar that I rely so heavily on.

I’m hoping this neuro consultant will be on a level with my professor and show some humanity and patience,this feels like the last barrier I need to cross now so I’m pinning a lot of hope on it.It’s like you say most of these practices now have locum who have no interest and any paid gps are just focussed on that one thing only scenario and ten mins to get you out the door.x

[Parksy in reply to Hidden]

What a nightmare for you. I have awful memory problems and it does concern me. I read an article on cognitive function and the importance of magnesium and cod liver oil. Magnesium l threonate is the only magnesium that crosses the blood brain barrier and is very gentle, never ever touch magnesium citrate, it’s used for laxative purposes and stops you absorbing magnesium and also depletes your stores. I did a lot of research on cod liver oil because If you take a supplement it’s got to be good and not add more issues. So for example chemist/supermarket seven seas type cod liver oil is so refined that they have to add back in pharmaceutical grade vitamins which just create expensive urine, good ones with naturally occurring vitamins are nordic naturals and Rosita which are also mercury tested. They do make a difference. My concern is the head injury and memory loss. I’m hoping they scan you.

[Hidden in reply to Parksy]

That’s good info to know parksy thank you I’ll have a look on Amazon now.x I begged a gp about a year after I’d had the head injury to send me for a brain scan because even after having physio privately I was still bad,Physio said I had double whiplash and my brain wasn’t sending correct signals to my body so I was still falling trying to hold onto walls to get to toilet etc,the physio was a huge help,the gp said she couldn’t refer for brain scan but would refer me to eye hospital as my left eye was still bad as the blow had cracked my eye open and my jaw so she would suggest to them that a scan would be helpful and leave the referral choice to them,they guy I saw was horrible but said he suspected a fistula so would arrange a brain scan,he phoned me with results said no it wasn’t what he suspected didn’t tell me any more was in a rush to get off the phone and discharged me back to docs.Hopefully I’ll get some answers with this guy now.ty x

[Parksy in reply to Hidden]

Surely with a head injury like that especially involving the eye orbit you should’ve had a brain scan? Unbelievable. It’s like us “Joe bloggs” on the street are dispensable. What if there’s a small clot pressing on nerves or an impingement on the nerves causing this! It makes me so angry.

[Hidden in reply to Parksy]

Yes that’s why I battle on but have had to do it all as a paying patient,immediately after I’d had the accident I should have been scanned but wasn’t.it’s been a struggle believe me x

[Hidden]

Thank you beginner1 x

[Hidden]

You are thinking just as I was twelve months ago before I went to see a neurologist. Should I tell them about the regular use of B12 or not but then decided I had to tell.

As it turned out she wasn’t prepared to support B12 use beyond the strict terms of the licence for it and couldn’t see any route by which the injections were giving me the results I claimed. However she did order EMG studies to see what was going on and if that could make any suggestions for treatment.

The EMG test confirmed Peripheral Neuropathy but in sensory nerves not motor nerves. It also suggested that some of the problems, particularly in my hands, could be the result of restrictions of nerves in my elbows and wrists. So referrals to specialists surgeons were mooted.

She did suggest trying amitriptyline and issued a prescription. That wasn’t suitable for me as I took one and ended up with pink forearms.

Talking this over with the GP he wanted to try using wrist splints to see if they helped. I had also had a whiplash accident many years ago and NSAID has helped then so I would try paracetamol and ibuprofen first before any others. That has proved very effective, not exactly a cure but a treatment as needed.

It would have been very useful if the neurologist had been prepared to support the regular injections, certainly in view of the importation difficulties we are likely to face now. I do have the benefit of a retired GP who takes the attitude that B12 is non toxic and he would have prescribed exactly what I am doing had he still been practicing. I can’t use his opinions in any of my consultations though as he is no longer registered to practice.

The additional blood studies the consultant ordered spotted something which could have indicated a devastating possibility. There were a few anxious weeks before that was dismissed as something to watch rather than be concerned about. The six monthly blood sampling and analysis is just another nuisance.

So all in all the neurologist consultation and follow up may not have given me what I was hoping for but it has identified things which are the result of PA and which aren’t.

It showed the car accident thirty years ago is still having an effect. It has also confirmed what PA is doing.

What you tell your neurologist is of course up to you. I have outlined what I did and what the result has been as for me it has identified what is actually going on. You have such a long list of effects coupled to a long list of possible causes which must mean you are crossing the boundaries of the specialities of the consultants you are seeing. It will be interesting to see what happens after next Monday’s consultation. I hope it goes well for you.

[Hidden in reply to Hidden]

Thank you for your reply kcbrecks.It was very interesting and gave me some food for thought.I’m assuming you are referring to dr ch.... who I also found very supportive via email and he actually stopped me going into full blown Addison’s because before I started every other day shots I was so ill and he advised me to continue with the b12 under the guidance of my then consultant and then after a few weeks we did the sst testing at oxford and it was fine so that alone saved me a lifetime of steroids.I have much to thank him for.I have found that any consultants stick quite rigidly to their own specialities and there’s not a lot of consideration given to other issues,no joined up thinking,but this one I see is more amenable to my thought process so is happy to refer me for the testing I request also he does make suggestions we can investigate too. And agrees my gps are useless.what I’m not happy with is the compulsion to jump onto the drug solutions.I would be rattling by now with steroids,statins,bone drugs that are downright dangerous and brain altering drugs etc so I continue on researching and trying to find answers without taking pharmaceuticals.I’m not a health freak and I’m not an attention seeker I’m just thorough and have gotten so many answers via testing when my useless uncaring gps have said all normal and I admit I get a dose of self satisfaction when I present them with the evidence that they’re wrong and just lazy.

The deeper I dig the more I learn but sadly can’t retain.

I’ve had some great advice here today as always and as a result I’ve now decided to try a functional nutritionist I’ve found one locally and emailed her,my gut is so unhealthy as a result of HPylori and p.a so I can’t believe that even with the help of my b12 shots I can fully benefit from what I’m doing without some further help maybe from a different perspective.Many many thanks again to everyone for your input it has certainly made me think and has been an enormous help.xx

[Hidden in reply to Hidden]

My ex-GP is a personal friend whose computers I maintain. We have known each other for twenty five years now and we chat about our mutual interest in IT and photography. He has been instrumental in finding solutions to other medical problems. His history goes back a long way and he talks of his first day in practice when he was shown the dispensary with its rows of jars and bottles but was then told there were only about nine of them of any use.

There are no prizes for getting older. But it is better, I think, than the alternative.

I hope the consultation gives you something.