Weird symptoms

[draxina]

Hi was wondering whether any of you have a spacey dizzy feeling in your head and an internal vibrating feeling throughout their body. Also an onset of extreme fatigue and a sick feeling almost a panicky feeling? It almost feels like I have a migraine in the base of my skull and neck , like I have a 20lb bowling ball sitting on top of my spine, my chest feels quite tight too like i have to keep taking deep breaths.. I have had PA since 1992 and these symptoms have been with me since then ..I also have Fibromyalgia and heart disease.

[Foggyme Administrator]

Hi Draxina. Yes, I get some of those symptoms too. Spacey dizzy feeling, pain at the base of my skull and up into my neck, bowling ball head, and neck weakness. And pins and needles throughout whole body - all the time (what you call internal vibrating, I think).

Having to take deep breaths (called the sighs) and extreme fatigue are definately symptoms of PA and people with PA often have gastric problems too! An B12 deficiency also causes anxiety, so this might explain your panicky feelings.

It may be that you ar not getting sufficient B12 - your symptoms certainly sound like those of B12 Deficieny. But to be honest, it really difficult to be able to tell through an exchange of words.

I see that you live in Denmark - I'm assuming that you are having B12 injections for your PA? (The pinned posts give information about treatment regimes in the UK but will give you an idea of what you should be having so...

Have you checked out the pinned posts to the right of the page when you log on? These will give you lots of information about PA and B12 deficiency and are well worth a read.

But it has to be said that the are many cross-over symptoms between PA / B12 deficiency which are so common in other conditions. And as you will know, PA is an autoimmune condition and if you have one autoimmune condition, you are likely to have others (they tend to come along in groups) 😀.

It's also worth saying that it's not unusual for people to be misdiagnosed with fibromyalgia be use medic's stop looking and investigating for other conditions (though some people do indeed suffer with fibromyalgia 😖).

So....have you been tested to see if you have any other autoimmune conditions? If your medic does an anti-nuclear antibody test and it's positive - especially if it's a high positive - this will indicate that they should look further (it won't show what you have, just that you are likely to have something - and it should be investigated further).

It would also be worth getting your thyroid function tested since many people with PA also develop Hashimoto's thyroiditis.

Have you had ferritin and folate tested recently. Low ferritin will mak you feel very ill and B12 and folate works together so,if,your folate is low, then your body will not be able to use the B12 properly.

If you have ongoing neurological symptoms, your medic should refer you to a neurologist to make sure that nothing else is going on. And you could also ask to be referred to a gastrologist to have your gastric symptoms investigated.

With respect to my 'bowling ball' head symptoms, I've just been diagnosed with cervical spine herniations at C 4-6, so I'm not sure if those symptoms are due to B12 deficiency or to the cervical herniations (the symptoms of both conditions are very similar). A neurologist ought to do an MRI of your head and spine - this would show if you have any degenerative changes in your neck / spine. It would also be able to show,if you have something called a subacute combined degeneration of the spinal cord (SCDSP) - sometimes present when B12 deficiency is under treated (there's more information about that on the PAS website, if you are a member. Or you could look it up in the Internet 😀.

I'm sorry it's not possible to give you any kind of definitive answers...just a few suggestions and some places to look for information.

You've had these symptoms for a long time so I think it would be a good idea to check that you're having appropriate treatment for your B12 deficiency and also ask your doctor to start investigating to see if anything else is going on - especially in the neurological department.

Hope you manage to find some answers and start to feel better soon.

Please do post again if you need any further help and let us know how you get on.

Take care X

[Shash23 in reply to Foggyme]

Wht is the treatment if Scdsp occure ... I also face neck pain .. Wht should i do plz tell

[Foggyme Administrator in reply to Shash23]

Hi Shalinee. I see from your previous posts that you live in India, have been diagnosed with B12 deficiency, have neurological symtpoms, and are now having B12 injections.

First, in the UK, when neurolgical symptoms are present, after 6 loading doses have been given, the treatment is to have B12 injections every other day until no further improvement. For some people, every other day injections have to be given for many months/years to gain the best improvement since neurological repair takes longer than other forms of repair in the body.

Perhaps this is something you could discuss with your doctor?

About the possibility of SACDSC - this can only be diagnosed following and MRI scan of both the head and spinal cord. In the UK, a GP (general medical practitioner) would refer a patient to a neurologist, who would then order these scans and undertake a full neurological assessment.

There can be many causes of neurological symptoms and again, in the UK, it would be usual for a patient to be referred to a neurologist to rule out any other causes for the symptoms.

If your symptoms are due to B12 deficiency, it's important to have the intensive regime of B12 injections to have the best possible opportunity to get and keep well. Again, perhaps is is something you can discuss with your doctor.

Many GP's in the UK are reluctant to give the right amount of B12 for people,to get and keep well so it's worth noting that B12 is not toxic, addictive or harmful. The right amount of B12 to have is the amount that makes you feel better. For some people, this means having much more frequent injections than doctors want to,prescribe - even though guidelines do say this should happen when neurological symptoms are present.

Some people do decide to self-inject with B12 if doctors refuse to,prescribe the right frequency of injections for them (because we're all different and need differing amounts of B12 to be well).

Hope this helps. Put up a new post if you want more advice (the post you replied to here is a year old so no one else in the forum will see it, so nobody else will be able to respond).

Good luck.

👍

[Statesideheather]

Yes I have had some of those symptoms. My head can feel like someone is sucking everything out a tiny hole because there is this weird pressure but no pain and feeling empty and lightheaded at the same time. I really don't know how to describe it! The internal vibrating I've had as well. I get the pins and needles but this strange vibrating feels like its coming from my core and feels different than pins and needlkes for me. Feeling the need to take deep breaths happens, and for me , taking methylcobalamin makes this much worse. The hydroxy/adeno is what I've been using the past few weeks and I don't get short of breath. But that is a separate thing. I get short of breath as a symptom of low B12 and also a side effect of methylcobalamin. Sick and panic feeling are also symptoms I've had. I'm not a physician of course, but as the above commenter suggests, you may not be getting enough B12 or the right kind. My symptoms creep up fast if I'm not managing properly. And I have much better symptom relief with some forms of B12.

[19191919]

Yes I had them too. Resolved a lot after injections. The dizziness was related to BP meds as well so check other meds too x

Good Luckx