New organic symptoms but lack of asses by neuro team due to past history

[mermaid-680]

new symptoms of neuro origin and spinal not FND

Referal to neuro but due to past fnd dx they have triaged me as non urgent and won’t be seen fir 12-16 months unless Gp updates them . My previous neuro dr was reluctant to say fnd in my notes saying an organic spinal condition with small functional overlay . Didn’t want to do more tests despite autonomic dysreflexia reaction after bladder Botox treatment in 2016

He kept me on his clinic list and would see him if anything new came up

Lovely dr but anti mri have since moved and due to corona virus now huge delays in being seen. I’ve seen a private neuro physio who says spinal issue with neurological symptoms , have developed a contracture of right leg and hyperreflexia of knee both , bilateral sciatica with leg pains and cramps

Babinski is silent on left and only partial on right ie only 3 toes slight downward movement , ankle reflexes are there but subtle , sensory changes and increased weakness in my better leg so much so I can’t lift my foot and have had to have my car adapted to hand controls . Right sides trunk weaknesss .

I am already in a wheelchair and have been active and gym goer re upper body

I had optic neuritis in 2012 left eye eye neuro said mri was not normal and radiographer missed a bright white spot on optic nerve but dr didn’t record this in notes

I was told if I didn’t get another attack in 12-24 months I was unlikely to progress to ms however 5 months later I think I had it in the other eye but milder as my DVLA sight test showed a marked diff in vision of left and right eye . Mri showed 4 age related white spots. I was unable to te see the eye neuro as he was away on leave

I am not saying I have ma but new symptoms indicate upper motor lesion due to spinal cord or brain

My urologist ordered me an mri of lumbar and pelvis urgently and awaiting results

I’ve had a central disc cervical buldecatvc4/c5 for some years no nerve route involvement but previously neuropathic pain. That’s been stable but ideally I need an mri of thorasic and neck

Previous wrong height walking stick after rta in 1994 caused thorasic rotation and curvature of thorasic spine which physio could not address and this has caused facet joint stiffness and neuropathic pain mri in 2o15 rules out and disc issue or compression of spinal cord .. however due to my history of whiplash injuries and two head injuries who knows how this can impact long term

My right eye has sensory loss of cornea and I’ve had opcillopsia in 2012 when I had optic neuritis and I think it’s now back in the right eye as is the sensory loss

I was misdiagnosed with complex regional pain in left leg in 1997 when in fact the eying height walking stick was making use of left leg impossible with a 2.5 inch difference in stick heigh on what it should have been . I am not bitter but at the same time I saw a couple of drs who did not twig the stick was the issue abd gait was due to this not FND it wasn’t picked up till I went for rehab 2 years after rta scan results 3?months post rta in1994 were not normal but I was told it was at the time

Got report in 2010 fir neck dr re disc bulge it noted. Lesion of lumbar spine , smorles nodes lumbar ( poss due to rta ) birth defects of spine sacrum an extra lumbar vertebrae and missing lower ribs from birth

My current Gp feels I have not been properly investigated ever and that even though my previous neuro dr was lovely he wasn’t proactive and it’s clear this neuro didn’t hold up a FND issue but equally wasn’t willing to explore either but observe changes over time

I also think drs are affraid to give an organic dx for fear of getting it wrong and being sued or the patient then having the wrong treatment and that has become more clear over the last 20 years I’ve lived with undiagnosed symptoms abd just tried to get in best I can my last neuro suggested inpatient rehab for two weeks to see if I improved but after the autonomic dysrefkexia reaction he was clear in saying I could get worse in the process. Autonomic dysrefkexia cannot be FND its to do with a spinal cord injury complete or in complete

I declined rehab because I didn’t want to get worse after many years working in my upper body fitness to prevent muscle imbalance and I know deep down that it won’t be possible for them to undo the thorasic spine issue abd deal with my pelvis and lower back either

Past rehab has been awful with physios who are not interested and yet if people have FND they should be referred to a centre for evaluation and they would soon be able to say if def rather than many people being labelled FND due to negative test results

Interesting that since the launch of Covid 19 vaccination many people are suffering adverse reactions neuro wise abd because mri and other tests are negative they too are being given FND diagnosis which is very wrong when you are talking about an experimental vaccine that by its nature targets the neurological pathways re spike proteins vaccine damage is real

Any comments or feee back would be appreciated

Due to the corona virus it seem neuro departments are overwhelmed and are only seeing acute triage referals

My physio feels I should be seen ASAP as I could be suffering a organic spinal issue which requires immediate evaluation abd yet that is not happening and unless my Gp can update then and ask for a re triage I will be waiting a year at least

Sorry fir the long post but people wrongly labelled with FND are later treated badly re new symptoms which could be needing urgent review abd if that does not happen there is a delay in diagnosis and treatment which could lead to poor outcomes and avoidable long term disability

[Mic67]

Hiya, just wanted to reply and say I really understand your predicament. I do believe that any complex spinal issues are sidelined unless there is a clear need for surgery.

This process was bad before Covid and now is even worse. Add to that the mention of 'functional' and we are left to rot even more. If it helps at all, I recently had some physio for another issue and it has really really helped. I could only manage two or three gentle exercises and have built up slowly with a small weight to doing them at home three times a week and I can really see and feel improvements in all aspects of my life. That said, this was *not neurological weakness*.

I've ended up paying for further opinions on my spinal stuff but if I am honest, I don't trust medical professionals full stop anymore. I feel it's all gatekeeping to ''save the NHS''.

And yes it is seriously concerning that people are being labelled as having FND after taking the experimental jab, just because there is nothing on scans...very convenient isn't it...

[mermaid-680 in reply to Mic67]

Thanks so much for your reply Glad physio has helped some of your aspects

I have now contracture of the left leg and clonus in both limbs when out of wheelchair abd sitting on bed with legs over edge abd feet not touching the floor

I do believe that mri scans cannot detect issues at acellular level re spinal cord and in 2012,I had a rough episode of rotator cuff injuries which were misdiagnosed by the dr physio by the time I got to a consultant abd had an mri several months later I’d lost the use of the left arm .. and my right arm abd hand were exhausted from trying to make up for the loss of use of my left arm

The spinal tap done three days after admission was not processed at the lab within the 4 days time frame and the results took 10 days to come back

After that procedure which they took 3 attempts abd hitting nerves I lost my bowel function and my core strength went

I had to push for a repeat brain mri , eye vep and emg of limbs and brain but that was nearly a month after being admitted .. no scan of mid or lower spine done .. I lost weight went from 54 kg to 45 kg in a short space of time .. vep was abnormal in both eyes , not sure of the others as they never said but but brain mri was sane as done earlier in the year

The rehab neuro dr said that it was possible I had inflammation of the spinal cord at a cellular level but there was no way to confirm this cause they can’t take a sample of the spinal cord and look at it under a microscope .. that said they still went with the FND upper body at the rehab but once the rehab started the staff were not convinced re the caters and OT . They physio was not interested in helping me at all about of much enthusiasm as a pile of dung.. and I complained about this . They lost my notes once I arrrived at rehab and had no idea about my organic medical issues and therefore I had to fill in the gaps

So my experience of in patient rehab was not good . If so many people are dx with FND why are there only two centres in the U.K. with waiting list of up to 1 yr pre Covid

The sad thing about these vaccine injuries is that many will be told they will get better but due to the experimental aspect of these vaccines for Covid and the high levels of Graphine oxide that will simply not be the case . The spike proteins target the neurological systems and pathways and if it’s at a mi roscopic level then of course an MRI will not show it .. some people are developing MS post vaccination and GB syndrome but many will not but that does not mean it’s FND either ..

We are looking at a huge ticking time bomb for neurological disorders , prion disease and dementia due to these vaccines and there no way I’ll ever take it .. all the eye probs I’ve had are listed on the yellow card system and with organic symptoms of the spine well it’s just too high a risk when my risk of getting Covid or the flue is far far less and if. I did I would recover ..

Yes I think drs rely way too much on mri

Re diagnosing or ruling out but it should not be used as a route to discharge a patient if it’s clear .. you are only doing half a job and of course due to Covid drs in general are less wanting to have hands on contact Re examination which quite frankly is a cop out in itself

Sorry rant over but we are all frustrated but now it seems it’s going to be even harder to get any assessment or treatment for new prob that are not FND

[Mic67 in reply to mermaid-680]

Here's a new article in the Sun about the jabs and FND. I don't see how these people can deny the ingredients are causing the symptoms. thesun.co.uk/news/15692995/...

[mermaid-680 in reply to Mic67]

True the media is surpressing the evidence saying it’s rare .. well wards in hospitals are full of people suffering adverse reactions Am certain the truth will come out at some point and younger people have already twigged and won’t take it hence the passports for events , travel and churches , and students in sept won’t be allowed in lectures or live in halls unless they have had both jabs .. it’s so obvious now !!!

[mermaid-680 in reply to Mic67]

Yes the evidence is growing that these jabs have a negative affinity the the CNS and if this happens as a result of the jabs then it’s a reaction totally agree

[Kitty__]

I share your views completely mermaid and you too Mic. I'm in a similar boat. Was diagnosed two years ago. Since paid for MRI's privately. To prove this is biological. which i have. but still no treatment. Autoimmune left to run riot. No help for any of my 18 conditions and counting. The team at St George's I'm really disappointed in. Especially after attending their Seminar work shop last March. I have lost all faith in the NHS. Feel like the system has just left me to rot. 😔

[mermaid-680]

Sorry to hear of your issues My recent mri of lumbar shows disc degeneration and facet joint degeneration L5/S1 with narrowing of left foramen and degeneration of both hips which would explain some of my symptoms but not the neuro ones entirely

My Gp has updated the neuro drs with new info and symptoms and yet they won’t change my referal from non urgent which means a 12-16 mth wait to see them

The DVLA have been updated on my new symptoms , car adaptations to hand controls and now they asked for a field vision test due to my nee symptoms

I’ve had optic neuritis in both eyes in past with lasting damage to the nerves

So I did the test 4 times struggled with it but the resulting pattern of visual field loss was lower on both sides and significant ( but tubular defect ) since they have the results of this they are now writing to my go. To ask about my neurological symptoms yet Gp won’t see me face to face to review or test my reflexes

I’ve got hyperreflexia on both legs abd organic sustained clonus

No idea of upper body aspect but lower body is showing upper motor neurone signs of organic nature

My field vision test was not normal neurologically

Am so sorry you are not getting the treatment you deserve and need

My Gp is very proactive on some levels but not on others

He’s renting on physio input and feedback

I have nhs physio 4 sessions late September no idea what to do in meantime I need work on lower back to release the muscles and help with the degenerative disc abd facets joints

Gp wants full review of my spine and spinal cord but it’s not looking likely

Do I go private ? Can’t afford it or any tests

I have taken out private insurance but it won’t cover this or any ore existing issue

I would urge anyone to consider taking out a policy for nee future probs because the nhs back log including acute cases is going to get worse not better

I am on urgent list for Botox injections into my bladder but as yet no date .. the urgent list is very long indeed and non urgent even longer

We have to fight am affraid to get seen even more so

Make sure you have a proactive Gp who can navigate the current system they can bypass to get tests if they feel they are needed without seeing a consultant

Make sure you have a social services OT

And social worker

Regards vaccination for Covid

If you’ve had it you can detox via pine needle tea , star anise tea and this will combat the spike proteins or take NAC

There is plenty info out there on this but you have to look at verified Independant sites abd groups run by drs who know their stuff and are not linked to the pharmaceutical industry because they have all been brought one way or another

Please don’t get any booster jab as they can change the MRNA components abd but declare it

Polysirbate 80 is included and there is a risk of allergic reaction this has never been used in a jab before it is found in some prescription meds

If you have known allergies to medication your risk for a severe adverse reaction goes up significantly this can be very serious indeed

I go go on and on but please message me fir more info on where to look because there is heavy censorship of this verified info and therefore people are unable to make a fully informed consent to have these jabs

Which is what should be happening reiecislly as these are experimental treatments which do not work in the sabe way as traditional vaccines

In fact you cannot call these vaccines

They are a MRNA treatment delivered via an injection and that is not the definition of a vaccine