I am lost at what to do. Went to emergency private specialist this morning,he has questioned the B12 we have purchased from Germany that helps!!!! .... Had no Choice as refused B12 due to passing dementia test.
Everything below L4 and L5 consistent with inflammation. Everything above this has now got to be investigated. Pins and needles in neck,over his scalp, when eating .. gagging... pins and needles in neck and sweating. Now has to have MRI Scan above waist line and Brain,
Steriod and Nerve Blocker again in 10 days. Still No written diagnoses.
One thing the specialist did accept is the printout of Tracey Witty B12 Gloucestershire...Folly Lane.... so he could read later.
This all started after flu and covid Jab within a couple of weeks.
ten months !!!!....... f... the NHS !!!
Tell me who is responsible ... Ambulance that refused to take him because he was in too much Pain
His surgery .. who said he had trapped nerve in his back and neck!!!! even refusing us to go Private.@
Gloucestershire NHS Trust ... who have a bizarre way of treating B12 deficiency.
In the Daily Mail today.......
AS AN NHS DOCTOR, I IMPLORE YOU: BEG, BORROW OR STEAL TO GO PRIVATE.
I really do feel like giving up! Trying to cope day in and day out, fighting the NHS and the Specialist. I couldn't go with him this morning for the simple reason nobody listens. The specialist was under the impression that Doctors were educated in B12 Deficiency, He asked me last time to print details for him to read when he had time. I sent him Tracey Whitty's Folly Lane and what it's like in Gloucestershire.
🤞 he will read it.
Now further nerveblocker/steriods and MRI of Brain and chest area. Yes agreed to all of it.
I wrote everything down for him a page as long as my arm, and he agreed what is happening below L4 and L5 (inflammation of the spinal Cord) is all consistent with not being able to walk, groin pain etc etc. But what's is going on above this is not connected hence further MRI Scans.
I have been giving him B12 Injections from Germany, Now the Specialist has adviced not to have them, and to have H and B 1000 tablets ...... he was on them for several years.... use less.
He s angry, frustrated that eleven months ago before covid/flu jab he was walking miles and gardening. No body will Listen.
He doesn't want me doing things because he thinks the neighbourghs will say hes a lazy git and is leaving all the gardening and fence painting to me.
Is is worth sending specialist research/PAS articles on SACD, sub acute combined degeneration of the spinal cord and also white matter brain lesions associated with B12 deficiency.
The only reason he didn't want him to have B12 is because it comes from Germany ! I have thought about contacting Martin Hooper and Tracey Witty, especially as I have given the Specialist Tracey Witty's FOLLY LANE print out.
I have to tread very carefully, last time I was rather rash .... writing to my then surgery demanding to know Why they had changed my medical records.
(false belief in thinking the NHS/Doctors were honest. )
Google is Brilliant in getting pictures of demyelination of the Spinal cord. MS etc.
I will wait to see if the Specialist reads what I have given him. ........ I feel sorry for the Specialist as now been put into a position whereby he has the stress and extra work due to NHS mistakes.
He thought it was a slipped disc or trapped nerve.
Hey Sally Ann I been looking out for your post, to see how your husband got on yesterday, it’s a minefield that’s for sure😔
I want to say I’m sorry you are both going through this, they obviously do not seem to know what they are doing, and ignorance on they’re behalf is not an excuse.A good consult will pull out all the stops to get you the right help and diagnosis.
If you can find a specialist research them read the patient reviews and then ask for a second opinion via a referral to them from the GP. I will post a link on a very good consultant neurologist I have been researching, he has a wait though because of expertise, try the calling and speaking to the brain and spine foundation they are trained nurses who are excellent and this is a free services Mon-Friday absolutely expert in there field.
I will also post the link for these, another one to try is vaccine damage charity’s , the DRs won’t admit that this is the result of vaccine but you know it is, probably with an underlying problem being kicked off because of it.
I don’t say this lightly as a family we have lost a little one because of vaccine damage, my nephew had the chickenpox vaccine at 3yrs old was happy healthy little boy up to that day within 24 hrs he developed encephalitis was in coma for for ten months had statues epileticus (non stop seizures) when he came out of the coma he was blind deaf and severely brain damaged, he lived another three years in and out of icu and passed away aged 6 😔
Obviously my little nephew was a sever case 😢😔your husbands symptoms are very different but during the time my nephew was going through this horrendous ordeal we did a lot of research as a family and came across vaccine damage to other like your husbands, so don’t take the crap from doctors that the vaccine would not cause this it’s never publicised exactly how much damage these vaccines do 🤬
Sorry I am Back now. Thanks for your info, I will have a mountain of paperwork .
This Specialist is investigating further, all I can suspect he was waiting and seeing if he had another attack after previous injection (Steriod), sadly Yes.
What does concern me if and I say IF it is what I suspect, then there could well be alot more cases, now and in the future. I manage to find Documentary evidence that a leaflet came out in boxes of the Vaccine warning Doctors of this condition. .... Of course the general public do not see it. ...... How do you know if you are vulnerable ?
How many Doctors would look it up ?
I am not anti vaccine, BUT I will never have the Flu
After witnessing reaction on family member.
I hadn't had any jabs, because I was so I'll when they stopped my B12 because of covid. Perhaps that was gods way of me avoiding it ... who knows.
Time will tell.
HOw have you got on with the P.A. Society ?
I hope they help, Martin is a great help and a gentleman.
As new COVID vaccines are expected here in the US very soon, it is tempting to get one as I am so tired of not seeing people for fear of COVID. I have severe spine and nerve pain. Perhaps from going so many years severely B12 deficient. I had two vaccines and a booster in the first round of vaccines. I believe I have suffered worsened chronic pain since the last injection. This correlation made between the flu and the vaccine and increased spinal pain makes me think that my increased pain truly is from the vaccines. In the US , reporting about side effects has been really scarce. Anyone else have thoughts (or know others) that have had a like experience to Sally Anne’s? I am uncomfortable getting this new version of the vaccine with “Emergency Use Authorization” anyway but just can’t risk any more trauma to my nervous system.
Thank you for sharing this Sally Anne. I needed to hear it and re-think my impulse to get the new vaccine as soon as I can. I just can’t believe that COVID continues to affect our lives so much. And, I believe the doctor making an issue over the serum obtained from Germany is grasping at straws! I can feel your frustration. Isn’t it wonderful that we have each other for help?
It is wonderful support and difficult times.After reading so many reports about covid and B12 deficiency both of us will decline .
I also read this morning that if you get covid you should inject every day. I am not sure what is in the Covid Vaccine, I do know it has affected alot of people.
The thing you have to remember with vaccines, is that once it is your body you cannot do anything about it.
That is what is so scary. “Once it is in your body, you can’t do anything about it. “. This newest vaccine, targeting the new variants has not even been tested on people yet. Sadly, I have to come to grips with the fact that I am going to have to pass on this vaccine. I think the previous 3 over 8 months’ time perhaps was the last straw for my nervous system. Thus, more isolation, and the depression that comes with it, will continue. 😟
I just miss my grandchildren so much, but you're right the increased pain makes the depression worse. I am (strangely) grateful that before COVID I was already limited by my pain/disabilities to live life away from home so I was well-equipped for the isolation. That said, it really doesn't get easier. I am a very social being at heart. I am grateful for your post today though. I was wavering a bit on the vaccine. I am not any more! I just read the government isn't going to pay for the vaccines any more pretty soon, so there will be tons of people who might have gotten vaccinated that will refuse just because they don't want to pay. What a mess the US has made of its handling of COVID...a huge, political mess.
Jade the whole of the NHS has gone to pot. You read stories everyday, one case in the paper a young man with two young children, refused to leave A&E until he got a blood test. Diagnosed with leukaemia and died.What does it take to be heard ? As we all know B12 is cheap, but the NHS refusing to treat people.
All I can say is that I am glad that I am nearer to my grave than my cradle, because I hate to think what it is going to be like in 2 3 4 5 years time.
So utterly sad. Last night I rewatched the Sally Pacholok movie (the dramatization not the documentary) ... so much malpractice, ignorance, arrogance... I was shouting at my computer the whole night. And I keep read so many articles on how doctors are overworked etc etc. It doesn't matter what the reason is, they need to fix the problems not ... [insert every other useless thing governments spend their time & money on]. I could understand if this was the US & you could blame it on some capitalist failing but for goodness sake it's the NHS, the pride of the UK, held up as an example internationally. If we don't have our health, what do we have?? I lost 6 years of my work life to misdiagnosis & i'm still not 100% but others are not as lucky. I'm just so so sorry.
But overall I'm well, thanks! I keep getting better the longer I stay strictly gluten free. I've written 3 email drafts but i am so bl--dy wordy I keep revising trying to cut it down LOL. Will work on it some more this weekend.
Is your husband at least still slowly getting better with the continued b12? Will you continue SI'ing?
👍 I am sure you will send a very interesting email, that will impress the recipient. I will continue with the B12 !! If his nephews can inject themselves to enhance there endurance sporting activity ... Why should I stop Injecting someone who is ILL.
I think the time has come that when we read such horific stories is to bat them to out MPs. If m ore people did this tather than sitting back and accepting this awful situation they would have to act.
I have copied the story of the failing NHS in the daily mail and batted it to mine.
👍 I sent my MP a lot of information on PA a while ago and said we were all tired of being treated in the way we are and that we wanted to raise awareness of the condition and get better treatment and more understanding
I am going to frame the article and put it in the porch, just in case I have to get the ambulance or Doctor out . I honestly think if I sent it to the surgery they would endorse it, photo copy it and plaster the walls with it. SAVES them time and money in letting the Private Sector take on there failings.
BTW, I have been on this forum long weekend enough to know the US medical system is nearly as bad as the NHS. Cutting Medicare coverage is next; cutting everything and prioritizing “big money” procedures and surgeries is the focus. $$$. There is no money in B12 deficiency so it is ignored.
So frustrating, I booked him a Brain MRI scan three or four months ago .. he cancelled it. Today he booked one , I asked him if he filled the form in correctly, he said yes. I said did you tick the box where it asks if you had an operation on the eye .... No. I thought for once in his life I would let him deal with it. Backfired. This afternoon he asked me to ring someone he promised a favour, but couldn't keep ...NO you promised you cancel.
A few more weeks of making it his responsibility to take control, and me stop molly cuddling him might hit home!
I’ve been waiting nearly 2 years for a gynae appointment considered important by my GP and was told on enquiring that they aren’t even seeing people on that list and that if not urgent(life threatening) I likely won’t be seen.
Yes I had Bulgarian neighbours who said the same. What they don’t do in other countries is dedicate hours and hours to drug addicts, drunks etc etc If we charged for ambulance use and refunded the genuine users we might get somewhere but I digress, apologies.
It is truly awful what you and your other half are going through. I feel here is a safe space for us to rant and actually be supported because P.A./B12 deficiency is so, so poorly understood. Please release the emotional burden. Many of us know your frustration and dare I say, anger.
I do hope ‘they’ are able to rule out serious conditions with the scans. It is disgusting how you, your other half and others have been treated.
Back in 1992, I had a bad bout of flu, I worked with a functional nutritionist and it’s very likely it triggered my coeliac disease. An acquaintance’s family member (sporty, young person) was admitted for 6 weeks. On their return home, they needed 2 people to help them walk down the stairs for a few weeks. (Diagnosis of Adult’s Onset Stills disease - rheumatology). The only ‘trigger’ they could come up with was second COVID vaccine.
I am convinced it was one of the Injections (Covid or Flu) plus low borderline B12 Deficiency. I said to sleepybunny months and months ago I think he has had a TIA Plus Bleed at the Back of his Neck. Half his tongue was swollen and Black. ( No I am not kidding) .... was referred to a dermatologist ????
His private specialist after having got more than two months of records, told hubby he was very seriously I'll.
I have seen the Scan (or Part of it) . It does not look good.
Now it's so say trapped nerve...... since when is a trapped nerve a very serious illness.?
HIs surgery now not using his mr ..... surname but using his Christian name, Oh how are you ....., they are falling over backward being over polite. Especially noticeable
After what I witnessed. Examination it was Laydown Mr
........., He said I cant .... Doctor How can I examine you if you wont laydown, just Laydown Mr.......
Can I have Blood Test ..... No., explained need B12 tested, as I am on B12 1000 tablets. WHY are you having them
You should not be self medicating (LOL)
I butted in and said If you would kindly look back at the records he was diagnosed 4 or 5 years ago by Doctor ....
.., who told him to take Multi Vitamins.
Next morning sheepishly he phoned...... . Yes you can have blood test. Come in ..... Dementia test .... passed.
Still refused B12 Injections.
10 months in and having second nerve Blocker and steroid.
I have a dam good idea what it is.
But what does frustrate me is about complaining .....
He says NO due to fear of being kicked out of surgery !!!
HEy Honey ... look what they have done to you, and what they have not done "TREAT YOU"
I am always suspicious when attitudes and diagnoses change suddenly.
I am shaking my head in utter disbelief. You know him best are with him most waking hours. Plus, the condition he is in and all that he suffers, as do you, trying to fight his corner.
I am sending much strength and my thoughts are with you both.
Thanks Narwhal10 he is feeling a lot better today mentally, slouched on sofa. Yesterday it was very tense. I just think the frustration of not being able to do what he did a year ago. He admits he has to say NO, and he has to recover, instead would have a good day maybe water the garden, sit down for an hour then crash.It takes along time to recover, and he has had to learn the hard way as frustrating as it is. I was just reading Martyn Hoopers story .... I think it is a man thing, not telling Specialist/doctor true account of symptoms. But I just take the highs with the low's
Come on here and vent.
He was a very Social person, now he finds it quite isolating, and people start to disappear nor phone.
But I dare say that happens to everyone.
Hopefully after steriod injection he will improve.
We had a discussion a few weeks ago about how much we were prepared to spend to get healthy.
Well I thought I would give you a Laugh.
He went to specialist Friday, Tried to get MRI and Steriod Injection on the Same day, due to roughly 80 mile round trip. Impossible the specialist said get a Taxi ... I dont Know how much a Taxi would Cost for 2 Trips.
Doctors said go private for Osteopath and Physio
Minimum £40.00 per session at least 10 in 6 Months.
Tax man sent 10 emails to him saying we have under taxed you by £1.20 demanding payment.
We get just over £13K per year.
Are we out of touch, or are we living in a blinkered society where by we are budgeting , and still buying our meds and paying for our own healthcare, and £40.00 is peanuts.
I suffer from same plus spinal issues plus PA like symptoms, however my GP wouldn’t listen when I asked to be checked for this (I have other existing conditions they say can show similar to PA or even A alone. I didn’t know PA can affect the spine! Seriously, getting anywhere in NHS is so difficult, unless it’s something obvious to them.
As for going private..the majority of Consultants in private health are also NHS Dr’s. Yes, waiting times much faster but generally they still work within exact same guidelines, attitudes etc. Of course if a mass of people went private it would work well for many Dr’s too, financially and eventually could tip the scales from NHS to private health and that isn’t necessarily a good thing. The NHS give Dr’s/Consultants massively beneficial pensions, a good reason for some splitting their time NHS & private. Never used to be a
I quite agree, This consultant is solely Private, some what reliant on NHS referrals from people who want to go private. But is not impressed with the NHS ...
Has your doctor considered an autoimmune response to the vaccines such as Guillan barre syndrome? I’m pro vaccination but I started with my peripheral neuropathy after the flu vaccine two years ago. I also had borderline b12 levels which had been steadily decreasing over years so it was never clear if b12 was also involved. My peripheral neuropathy got worse after each covid vaccine but improved again after a week or so. Hope things improve soon.
Hi Gen89, The Doctors at the surgery are/ have done nothing what so ever except an Xray, that the radiographer said "is it any wonder the NHS hasn't got any money, it's an absolute waste of my time when I can see you need a MRI Scan"Ambulance refused to take him as he was in too much pain, Doctors didn't want to know ... hence went private.
We asked to go private and refused until a Lady Doctor, jumping up and down in her seat said YES of course you can go Private. That was after 6 months. Since then other than One blood test have heard nothing what so ever.
Blood Test 4 Tubes... picked up results only two results to give Specialist ... Hubby said to specialist is that all the results you get from 4 tubes ? No Full Blood Count, No B12 details No cholesterol results even though he had had a letter saying about his cholesterol being just over 6.
Deadly Silence except for over familiarity in now calling him by his Christian Name.
We are now under the Specialist, another nerve Blocker
And Steriod, and further MRI Scan s waist to head.
After doing my own research I believe it is
Transverse Myelitis ... google, scroll down to NIMDS.NIH
Website and you might be concerned about low B12 and Autoimmune diseases.
Which is a concern for all here.
I did look into G.B. Syndrome but T.M. fits all symptoms.
Brain and spinal mri scans certainly sound necessary to investigate whether any central nervous system damage. I also had nerve conduction tests to check whether damage to the large nerves in the arms and legs. I also had a autoimmune panel of blood tests done by my Gp. The nctests and mris seem to be standard investigations necessary for a neurologist to diagnose or rule out conditions. Also has your husband been checked for basic things like diabetes, low iron levels? I shall have to have a read up about TM.
Awwww Sallyannl, I am so sorry hubby is suffering so. I wish there was something I knew to do. Just know that we care very much. I have a lot of issues with my spine, synovial cyst, bulges, trapped nerves, can't walk well some times not at all. years now, but very bad the last few months. No one seems to think anything is connected or bad enough to cause all this trouble. When they say that, it is like calling you a liar or faker. It really sets me off. I tell them, if I was going to make something up, I would surely make sure it made sense. The groin pain and nausea and inability to walk is the worst for me. I have issues lumbar and below and up in my neck and one of my ribs is constantly slipping out of place which is very painful and makes it hard to breath. Even when I am sleeping and just go to rollover, I can feel my rib trying to displace. I have to stretch and move so it goes back in. Excruciating headaches from my neck.
Hubby's and all of this spine stuff has to be linked to the spinal damage PA does. It has to. I have had nerve conductive tests that have showed minor issues but nothing that would cause what is happening. Again, something is there. just not bad enough in their eyes ?????? I have a VERY HIGH pain threshold. At least I used to. So obviously these bulges and things have to be causing us all this pain. Next time, I am going to come right out and ask them, so do you think I am lying or making this up? I want to put them on the spot. You found issues, why aren't those issues the problem???? There ARE issues!!! Obviously they are causing me problems, that is why I am here!
I am so sorry, I have no words to help you. I totally get him feeling like neighbors will think he is lazy. And you can't hire someone because all our money goes to B12 and we can't work. I am going to save this post so I can come back to it and see how hubby is. I can never find old posts. I get lost in here. LOL Sending big hugs 🦋🌺🦋
Hi EllaNore, sorry to read you are still suffering Hubby has pain in the groin as well, all down the right side.
Have you had a MRI Scan ?
Doctors totally ignored him, told to go private for physio,
They used to come to the house, but it did nothings for him.
He is having further Scans and steriod injection.
Then it is wait and see ..... last resort and operation,
But the Specialist wants to see what's going on in his head and neck ... pins and needles, very heavy sweating especially when eating and at Night. I think some of that is the inflammation, others maybe nerves getting feeling back. But its is normally below the damage, So obviously looking for damage above now.
We had a chat and a friend who gets newspaper for us, told him people know you are I'll, dont worry. Everybody who knows him knows he was a workaholic.
Thing is you can ask them, but half the time they waffle on without proof they are guessing. And making a fast buck too. DAmage to the spine can cause an awful pain,
Break a leg any day !!
Have you improved at all with B12 shots? It can take years, and is so debilitating. I would advise anybody in there forties to have tablets every day.
Well I'm glad to hear he's getting an epidural. I have had two of those one helped one did not. I'm really glad that your neighbor told you that everybody is aware that you guys are not well. Maybe they'll even pitch in a little bit and lend a Helping Hand.
Yes I have had some improvement but I still spend about 80% of my time laying down. Sweating like crazy. So yeah the B12 injections are helping me somewhat but not as much as I thought they would I guess I just have to wait longer.
Yes I had a lumbar MRI a few weeks back and they found lots of things wrong but none of them they say are causing these problems. Bulges clumps of nerves. I can't remember what that's called. But there's definitely nerve issues but they say that none of the nerve issues that they see can account for my symptoms.
I go to see a pain specialist for my sacroiliac joints. That's one thing that you could have them look at for your husband is the sacroiliac joint it's a very skinny little place where your hip and your sacroiliac cone together. It's not exactly a joint but it moves very ever so slightly and it can cause tremendous pain. The nerve conductive doctor suggested I go in for that because he pressed on mine and it hurt. And the type of pain that the sacroiliac or SI joint causes are the symptoms in the groin. And pain down leg that gets mistaken for sciatica.
Let me see if I can find some documentation that I found about the SI joint. And I'll post a link. No one ever thinks about the SI Joint but it causes painful problems.
Ok, here is one link, it didn't mention PA, but it mentions a lot of immune issues that PA causes. I will try to find the one that mentions PA. But this is informative.
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