An update on my progess, Parkinsons/b12

[Marlboro123]

A few weeks ago i posted about my low b12 and neuro symptoms. I was concerned about the fact my problems were along the line of parkinsons and my neurologist had ordered a DAT scan to establish if parkinsons was the cause. Today i had my appointment and the good news is that the scan was all clear, he was unaware of my b12 issue as that was only found out in late August by my g.p. He listened with interest as i informed him of what had happened since my low b12 diagnosis and he sat back and said "very interesting" he asked about any improvement and he took his time before commenting it seems possible that this is the cause of my problems but it was something that needed monitoring so he suggested that as i am almost 3 months into loading doses eod that i should now switch to one injection every 6 weeks for 3 months and then a follow up appointment. I knew that as i am still experiencing neuro issues that it should continue every other day but i considered that at the moment it was best to keep quiet as i had already made my mind up that i would learn to self inject and follow the guide lines myself.

2.30 pm today, my g.p rang, i had no appointment booked but he asked how my appointment went before saying that due to a national shortage of b12 they were removing me from having injections and were no longer able to help me other than give me tablets. He said i had had enough loading doses and that they were unable to allow treatment as per nice/bnf guidelines as the decision had been made due to the shortage of b12. As this point i started to fume as he said my next two weeks of injections were cancelled. He cited my negative antibody test but refused to comment when i told him i believe up to 50 percent of people test negative when there positive. They were happy to begin with when i started injections but they have obiously decided not to bother any more, he said they can give be tablets. This is when i said don't bother because two days ago i ordered 100 ampoules myself and if you can't be bothered to help me i will do it my self. This changed the conversation and he seemed to admit if that was what i wanted to do then he would be happy to support me in my decision and good luck to me. He has agreed for me to receive instruction from the nurse tomorrow and that is that.

I am now waiting then for my delivery of b12 from apotal.de so not sure how long delivery will be, but at least now i now where i stand and that what the doctors told me at the start of how they can help me get better is vastly different from what they now say just because i need more injections which does not suit them. Angry yes but relieved i don't have parkinsons.

[jade_s]

WOW! Great news on the clear scan!! I am sure you're relieved. 😄 Second, well done for taking initiative. And third, well, the whole thing is just disgusting isn't it!

I don't know about apotal specifically, but orders to the UK from Germany usually take less than a week (minus any postal delays / strikes).

The shortage of B12 comment is a bit worrying. I wonder if it's at all related to the short expiry dates on Panpharma, since I believe they are one of the UK suppliers (?). Did he offer any additional information about this shortage?

[jade_s in reply to jade_s]

No known "severe shortage" of B12 , but the Estrogen drama continues unfortunately. Found this site from the NHS. nhsbsa.nhs.uk/pharmacies-gp...

Couldn't find anything else about a shortage, but y'all may want to befriend a veterinarian and ask for some "Smartshot B12" 😬 gov.uk/government/statistic...

[jade_s in reply to jade_s]

Just to followup and apologies for hijacking your thread! But the shortage comment panics all of us, I think.

I did find this from the U.S. FDA. Hydroxocobalamin was in shortage in the US between April 2021 and January 2022 but is now resolved. accessdata.fda.gov/scripts/...

The situation in the UK might well be different. I found this price concession website from the UK government (though I really don't understand how this mechanism works). psnc.org.uk/funding-and-rei... Helvella you probably know!

The PSNC allow contractors (pharmacies ?) to pay £11.49 for a 5-pack of Hydroxocobalamin 1mg/1ml this month rather the (higher?) set price for an equivalent product (when the original product is out of stock). [So perhaps there is a shortage of one brand??]

No wonder they complain that B12 is "so expensive" - that's more than double what we pay from Germany, and we're not buying millions of ampoules a year.

[Marlboro123 in reply to jade_s]

Yes, the impression i got was the shortage issue was just an excuse as he made no reference to stock coming back in. Recieved email half an hour ago order with DHL so not long to wait. It feels good being in control now. Neuro gave me a trial period of Gabapentin to help with nerve pain and rls, low dose to start with but hoping it will help. A friend of mine has rls and takes codeine and Gabapentin but i thought codeine could only be taken for 3 or so days but he says it works for him.

[jade_s in reply to Marlboro123]

Great news! I'm sure you'll get it in no time at all Thanks and sorry for the panic

Gabapentin is indeed supposed to help with nerve pain. I have no personal experience with it. Nerve pain is not anything I would wish even on my worst enemy, so I hope it helps!

[EllaNore in reply to Marlboro123]

I took gabapentin for a while. It really packed on the weight on me. They had me taking two tablets every 4 hours which meant I was taking six and eight tablets a day. I noticed my teeth were starting to break and I gained 54 lb in a matter of weeks. I don't know how it would react on you but personally I would not take gabapentin for myself. But I don't do well with any medication I have weird reactions to a lot of stuff due to the pernicious anemia. I did start taking tramadol recently and just acetaminophen Tylenol. And that seems to be helping me pretty good. I've taken a lot of medicine in my life and I've learned that it really didn't help me much with the reason I was taking it and it caused a lot of side effects that were worse than the symptoms in the first place. This is just my opinion. I can't say that that would happen with you. But drugs like that are very hard on the kidneys and they do cause side effects. I take two acetaminophen's and sometimes a half of tramadol and sometimes a whole tramadol. In the morning and it gets me through till about 3:00 in the afternoon and then I need to take some more acetaminophen but I don't take a tramadol until I go to bed. So when I go to bed I take two acetaminophen p.m. and a tramadol. And that's been helping me a lot. And I don't feel any side effects from that. One thing that happened when I took gabapentin the first time, I did not know I had pernicious anemia at this time but my legs were really giving me a lot of problems, and I took it for a few days and one morning I woke up and swung my legs out of bed to stand up and I couldn't feel below my knees on either leg and I fell to the floor. I tried to tell the doctor that that happened and he said Oh that didn't happen I've never heard of that happening before You must be mistaken. But I wasn't mistaken. So I don't know what that was. But it did happen. However like I said I have a lot of weird reactions to medications. And now that I know I have pernicious anemia I suspect that's why. Anyway that's just my story about gabapentin. It may not be the same for anybody else. However it is known to cause weight gain.

[jaybirdxNHM in reply to EllaNore]

I took Tramadol for yrs for arthritic nerve pain,diagnosed by specialist hospital, 'til it stopped working. Great difficulty with withdrawal symptons . Had Gabapentin and Pregabalin,all not really helping.Lots of side effects. Went on for yrs.

I started SI EOD B12 jabs with my GPs permission pain went. !!!!Yippee

[EllaNore in reply to jaybirdxNHM]

Yes, I agree. Completely. I'm not happy about taking tramadol either. I won't be taking it much longer. Withdrawl effects were some of the worst things from gabapentin, and cymbalta, All of that stuff. I had terrible side effects after stopping them. I really think because they are also used as psychotics. And those kinds of medications really have the opposite effect on me. Especially cymbalta. It was supposed to help with nerve issues in my legs, but it caused serious anxiety and when I stopped, I ended up in the ER with my entire body in atrophy. I couldn't bend my body at all. My fingers were stiff as a board and my legs would not stop shaking. They injected me with all kinds of things. A lot of injections all over. Don't know what it was, but it worked. They had put me on cymbalta when I was hospitalized because I was unable to walk for 4 days and had no feeling in my left leg. My brain simply could not make it work. And I only took that cymbalta for a week. So I haven't taken anything in over 20 years until a couple months ago when I started on tramadol. But I don't take very much of that either. I really truly try not to take medications as I just don't know how I'm going to react. For me, I think the side effects of medications are often worse than the problem that you're treating in the first place. I had kidney failure in 2006 from Motrin. That was quite a long ordeal. I have problems with my left kidney to this day. So, I do not mess around, that's for sure. The B12 has changed everything for me. It's a little miracle. The D3 has also helped with my pain.

[diabetty in reply to Marlboro123]

Hi Great news that you are Parkinson free.

On the nerve pain issue I had nerve pain with areas on upper thigh which were numb to touch but burning in the same area plus other random nerve problems and RLS at night until I was prescribed Gabapentin. I can take 1 or 2 300mg up to 3 times a day and they have made such a difference. I also SI B12 every other day.

I hope they work as well for you too and you feel the improvement as fast as I did.

Best wishes

[charks]

Does no one else find it suspicious that the consultant wanted you to have less frequent injections and now the GP tells you B12 is out of stock. Anyone else having this sort of problem?

I always expect the worse from Gps and am very rarely disappointed.

[EllaNore]

Congratulations marlboro123 both on not having Parkinson's and also for sticking up for yourself and telling them that you were going to self-inject and take care of yourself. This is just totally incredible. I can't believe they did that to you. All I can do is shake my head and sigh. It looks like we're truly all on our own with this. The other thing that I'm concerned about is that they say there's a B12 shortage. That's kind of scary. Again so happy that you don't have Parkinson's. I'm sure that must have been scary to go through. I'm sorry you had to go through that. I ordered hydroxycobalamin from the same place you did It's been about 2 weeks and they sent me an update. I'm in the US so I would expect this will take at least a month to get here. I was told not to be surprised if it's sits in customs for a couple of weeks. Good luck. 👏👏👏 You did good You did the only thing you could do. Treat yourself

[Nackapan]

Good news about your scan. Also despite refusal togive the treatment you need.

I'm amazed you are being taught by the NHS how to inject bought b12!

[nmayow]

I do find this disturbing how they can say one thing then another person says another . They are playing with our lives here . Luckily for all the support you get on her is so good and they can direct you . I would like to know where is there duty of care . Good news you don’t have parkinsons

[andepande]

what I can understand is if there’s a shortage and if it’s prescription vitamin how can beauticians give them to help give you a boost 🤬 makes me so angry ( not good for blood pressure ) 🫣

[Parlay]

that’s amazing news Marlboro123. I remember watching a video on you tube about a paediatrician in the USA who was doubly incontinent bedridden and couldn’t find his words and his only issue was b12 deficiency. It was harrowing to watch but shows the impact b12 deficiency has on us. I’m in Swindon and most people had their b12 injections stopped and not down to covid this was way before, it was like they had a mass cull of b12 patients. If it wasn’t for this site and the support I would be in that Drs position by now. Take control like most of us have to and good luck to feeling better.

[pitney]

Well done for standing your ground and good luck with your treatment 👍

[Technoid]

There is a paper on reversible "parkinsonsism" ( i guess parkinsons-like symptoms?) with supplementary B12 : researchgate.net/publicatio... . Only abstract available I think but might be interesting to you. I have hand tremors myself but its intention tremor rather than at rest.

[Sleepybunny]

Hi,

Great news that you don't have Parkinsons.

I feel very angry on your behalf that they want to put you onto oral B12 rather than injections.

Might be worth contacting PAS and B12 Deficiency Info about this. I'm sure they'd be interested.

pernicious-anaemia-society....

b12deficiency.info/

Have a look at this recent thread started by Hidden which discusses doctors wanting to stop injections and change to oral tablets.

I left some detailed replies and there should be some useful ammunition in there to fight them...

healthunlocked.com/pasoc/po...