I am 49 and Hypothyroid and vegetarian and suspect I might have PA (or MS)
I finally went to the GP last week and after having been dismissed initially I insisted I was seen because I couldn't go on like I was. I had full bloods done she also said she would test for B12 and also Diabetes and an MRI booked to see if it's because of a herniated disc 7 years ago that also gave me tingling fingers in one hand.
My symptoms are:
Absolutely shattered - walking up the stairs is a struggle at the moment
I have what feels like electricity in my legs and feet, like trembling inside and my hands shake a little. My husband said he could feel my leg trembling.
A burning sensation in my right arm then less so in left arm, also what I would describe as a 'menthol' sensation like a cold burning
Pins and needles and numbness in fingers and then last week my feet started getting pins and needles and numbness. My hands can feel very stiff and my body can feel 'tight' if that makes sense.
Clumsy, I keep hitting my shoulder on the door frame and my left foot didn't seem to pick up as much when walking. Seems better now.
I keep waking up through the night which isn't helping how tired I feel.
My left foot kept twitching and that was going on for a while and it's happened in my right too.
I work in admin and was struggling to type this week. I swear I could have typed better if I'd used my feet...
I go through periods where I my heart races even if I'm not doing anything.
Mercifully I'm not in pain but I've had a horrendous headache all afternoon and nothing has shifted it.
I think I have more symptoms but my brain is foggy at the moment and I can't think clearly enough to remember, sorry.
I had caught some horrible virus last Summer and had Pneumonia and haven't felt right since to be honest.
I'm terrified it's MS and I know nobody here can know but do you think my symptoms sound like PA? I'm expecting my blood results to be in tomorrow and undoubtably I will get told "All fine no further action" but I honestly feel so dreadful that I've been home off work for the past two days resting but I don't feel any better.
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SKYROCKET123
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Yes. those symptoms could well indicate P.A. You say you are Vegetarian . If you are a very strict vegetarian it could be that you are not getting enough vitamin B12 ( contained in meat , fish , dairy and eggs ) This can be easily remedied by taking B12 tablets . ( Dietary B12 deficiency) If the symptoms are caused by the most common reason for B12 deficiency, which is Pernicious Anaemia, then you need B12 injections . So you could try supplementing with B12 tablets and see if that helps .
If not then you should see your GP ,
You already have an autoimmune condition with your thyroid, and autoimmune conditions rarely come alone . PA is also an autoimmune condition , and I often read that they are “companions .”
I feel i need to warn you that getting a diagnosis of P.A is not easy . The medical profession has poor knowledge of it and the test for it — The Intrinsic Factor Antibodies test, is not reliable in about 50 % of P.A cases .
Like it or not, human beings evolved as omnivores. If you are on a strict vegetarian or vegan diet (especially) with no animal products or appropriate supplements, you WILL have b12 deficiency. Here's a good article on the matter: webmd.com/food-recipes/news... I suggest you reintroduce animal products into your diet until you get this sorted.
I think that one can’t recommend someone who is vegetarian or vegan for ethical reasons ,to ever eat animal products , even for a short time . .. It would be abhorrent to them . I could only recommend taking B12 tablets . …… This would solve the problem as long as the patient didn’t have P.A,, when as we know , B12 injections are the solution .
My point is that until an uncertain dietary/digestive issue is clarified, it's best to eat a "normal" diet, which in the animals that we've evolved to be (and yes we are ANIMALS), includes animal products. The OP's medical situation seems far from determined as yet, based on their post, and of course, they should follow whatever suggestions their doctors provide to them as they pursue a diagnosis. I agree that much of the way the majority of commercial meat in particular is produced in factory farms, etc. definitely has severely negative moral and ethical , not to mention environmental implications. Personally, I'm basically a pescatarian, with about 95% of the animal protein I consume being from wild caught fish. I'm fortunate to live in the Puget Sound area of Washington State, which has a terrific seafood supply, especially salmon, which is a favorite. I do eat eggs & dairy, particularly cheese & yogurt.
Thank you for your reply. We had something of a crisis at home hence why I haven't been able to reply until now. My husband got some sublingual B12 and a spray and the difference in even the space of one day of taking is is astounding. I feel so much better and though I am having some residual twitches and buzzing in my feet, I can't get over how much of a difference taking the B12 has made. Which proves to me that this was what was making me so ill. Husband says on Thursday I was so ill I couldn't walk upstairs without being breathless and I looked so unwell. My GP is supposed to be phoning me tomorrow with my blood tests but I know now that I need to keep my B12 high because I can't get ill like that again.
I’m so pleased to hear your good news . It’s important to have a good supply of vitamin B9 which is called folate in food and folic acid in Tablet form . A modest dose of 400 mcg is recommended. ( which is what is taken in pregnancy!) This.vitamin works together with B12 . But don’t take large quantities-It can be overdosed . Vitamin B12 can’t be overdosed which is good to know . Very best wishes ! 👍
Thank you, I will find out more tomorrow from my blood test results but having started supplementing B12 since Friday I know that I must have been deficient for me to feel so much better since taking the sublingual B12.
I think many of us here started out thinking we had MS , I suspect because it is more widely known than PA. I did too, but turned out to be plain old B12 deficiency that resolved with injections.
Post your results when you get them. Do you take b12 or a b complex already?
It is possible to have severe symptoms of B12 deficiency when serum (total) B12 results are within normal range and in some cases, above range.
You may be interested in looking up "Functional B12 deficiency"...this is when there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
Were you supplementing B12 prior to your blood tests as this may influence the results and in some cases can make it hard to get a diagnosis.
I've assumed you're in UK. If you're in another country it might help if you said which one as forum members can then post more relevant info.
Patterns of treatment vary between countries and the type of B12 used in treatment can vary.
B12 deficiency can be misdiagnosed as other conditions.
It's quite common for people to have a diagnosis of ME/CFS/Fibromyalgia and there have been forum members with a diagnosis of MS.
Misdiagnosis of B12 deficiency as other conditions
I have PA and also around 8 weeks into recovering from a herniated disc. I can relate to the 'menthol' cool burning sensation you describe, I couldn't think how to describe it but that describes it perfectly, I've had it in my thighs on and off for the last few days.
This is just the latest symptom of many as I seem to be moving through a series of symptoms, as one symptom ends, another starts.
The physiotherapist described to me what a herniated disc was and that the disc itself was made of a fibrous tissue that tears causing a bulge that can press on the nerves in the spinal cord and can cause various symptoms.
He explained that it would normally heal over time but may remain weakened and could result in repeat injury to the same area.
Is it possible that you have had a re-occurrence of your disc injury?
Thank you for your reply. It's possible my disc is slipping again but I'm not having the excruciating pain I had when it went originally. I'm sorry you are going through this too, it's awful isn't it?
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
PA and Coeliac disease are both auto immune conditions that can lead to B12 deficiency.
Guidelines below suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
If you want to know why i think it's so important to know what the local guidelines are in UK, read the blog post below.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more on causes and symptoms, more UK B12 documents, more B12 books, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
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I've got PA and wonder if I need any other supplements other than B12 shots.
Long standing PA -can I ask for blood tests?
How long till I feel human?
