Pernicious Anaemia Society
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Been refered to Neurology

Had been doing ok, then before injection in October started getting headaches. These have continued on and off also getting fever especially at night along with hot needles/burning sensations.

Unfortunately stress not helping.

Wondering how long I may have to wait until I am seen by Neurologist?

I am in Glasgow so hope it will be the Southern General or as it is called these days the Queen Elizabeth ( or locally the Death Star or Sweaty Betty's)

GP has changed to 6 week injectionns. Has she said herself, she is not an expert.

I don't have actual blood test results. Already had Hypothyroidism before PA was diagnosed in May.8

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Hi panpal... I'm also waiting to see the neurologist ( had a appointment for last week but it was cancelled due to the consultant being off unwell)... I'm also in Glasgow ☺... My appointment was at the southern... I also have bad headache due to the injections.. Hope you can have a nice Xmas 🎄 while you wait.. All the best for now ☺ and good luck ☺

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Hello & Thanks Frances55,

I hope they can help you and give you some answers. I wish you the type of Christmas and New Year that you want.

Hope the Consultant sees you soon.

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Thanks panpal ☺... I had a really nice Christmas thanks... Hope you had a good one too ☺... I've got a appointment for the 21st of January now,.... So I'm hoping to get some answers then... I hope you can too.... All the best for the future ☺

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Do you know if your hypothyoridism is properly undercontro? If you have recent results you could try posting these on TUK forum

healthunlocked.com/thyroiduk

also, could it possibly be menopause related.

Good that you are getting 6 weekly injections. Do the symptoms improve after injections and then start to come back later?

also link to an article on thyrogastric syndrome which your GP might find interesting

ncbi.nlm.nih.gov/pmc/articl...

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Hello & Thanks Gambit62,

Thyroid is steady. Did have hot flushes with menopause, but they eventually stopped. I am on Ramipril for BP not sure if that may be having an affect on the balance of my potassium levels.

Do generally feel better after injections but last one did not have as much effect as previous. Definately could not last the 3months.

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Hi penpapl, I'm also fairly near glasgow, I've already been diagnosed several years ago, but it as only through this forum that I feel like I've been able to understand what is happening with my body, I was diagnosed with peripheral number and it was put down to my life style, however I've always had problems with my stomach for years, and have been on medication to help with it, but I was getting skull crushing headaches and skin problems, so I ended up asking for a blood test to see if my B12 level were low, and yep they were below normal and had the weekly loading injections, and now on a 3 monthly top up, so far no more headaches, but the burning and pins and needles are still with me, so I think my symptoms are with me for the duration of time, and having already having neuropathy and then finding out that my B12 were low has been a little hard to gauge, so ultimately I don't know if I was just given a correct diagnosis all those years ago, or whether I should of been tested for B12 issues which in turn have left me with the same problem that I have today, hopefully your appointment is in the system and you shouldn't have to wait to long, cheers, all the best for Christmas

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I had hot needles a while after my hypothyroidism was diagnosed. My old GP refered me to Endrocrinologist who had me standing and bending down...said I could do that better than him. That was all that was done.

These things take a long time developing.

Good Luck to you and have a good one!

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Another factor at play?

Some years ago, I was belatedly diagnosed with PA: belatedly, because my B12 level was about 60 before treatment; and my peripheral neuropathy did not fully resolve afterwards, as a consequence. Once the cause of my many problems (including gut issues, crushing headaches, pulsatile tinnitus, unsteadiness, tiredness, inability to sleep properly...) was found, my B12 injection requirement was much in excess of the 2-monthly injection regime for cases of neurological involvement, and remains so.

After several years of more or less stability in my neuro symptoms, I began to suffer sudden cramps in the feet and front of the legs, and later on there followed periods of a burning sensation over the tops of both feet. MRI scans revealed bulging discs and bony spurs in several neck vertebrae that are pinching the spinal cord at those levels. This probably explains things.

Years subsequent to my PA diagnosis and treatment, I discovered that I had developed a degree of intolerance to gluten-containing products. On much reducing my intake of them, my gut issues have been improved. Like PA, gluten intolerance is an autoimmune problem: have one, get one free.

I thought you might find something of possible relevance in my experiences to discuss with your doctor, if your issues are not otherwise being being resolved.

I wish you a better 2018. Stick at it.

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Thanks Dollery.

I had a psychiatrist in 1999 who wanted to shove me on Lithium medication. He was very arrogant even though he had just passed his psychiatric exams a few months before! Lithium is very toxic!!!

Those leading research into psychiatric conditions now think that psychosis is linked to the brain's response to emotional trauma ( dissociative states) or/and autoimmune disease.

At least my current GP is not trying to convince me it is all in my head...even though that is the location of my brain!!!!

Good Luck & Best Wishes to you.

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Hi Panpal I was referred in June this yr my appointment came through for late Nov at the Queen Eliz.So 5 month wait for me. I seen same neuro I last seen at RAH Paisley. Not sure if they have centralized neuro at QE. I have to have 3 mri scans my appointment came through for the new queen victoria hospital. South Glasgow I believe! I live in west of Scotland and don't have a clue where this hospital is. Happy days!

The name Sweaty Betty`s wouldn't have came about because the place is overheated by any chance? Have a nice Christmas and New Year xx

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Thanks Kay1986.

That gives me some idea of how long I may have to wait. I haven't seen a Neurologist before.

New Victoria is in Langside/Battlefield area of Glasgow. Think Mount Florida may be the nearest train station. Unfortunately not an area I know well.

Yep, think it is because QEUH heating is so warm. Will always be Southern General to me...even though I like the 'Death Star'. It was perviously the Poor House.

Merry Christmas!

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