[Mcharris]

I have been a member for a while but have been absent.......
Tiz good to be back where I feel welcomed and not judged as being off my rocker, so to speak!

My medics are still trying to decide if I have MS....... and because there is no one else on our Island to send me to for a look and possible diagnosis, I am being sent to see another neurologist, over the water.... at the end of October. Personally I feel tiz NOT MS....... I do not want a diagnosis of MS and so far the MRI's are very ordinary and not showing what the neuro is looking for.... but the symptoms are there! - according to him.

I wish, I truly do, that just once in a while they would consider looking 'outside ofthe circle' so to speak.

Last year my B12 serum dropped down to 3 hundred something and I had all of the same symptoms. I fought with my GP over taking B12 IM.... he argued me that it was unnecessary, that my serum B12 and Folate were in the 'normal' range. I took it upon mysel to get B12 and self inject - you can do this in Ozzy Land........ my serum levels slowly crept up to 700.... so there was a deficit and the injections did help. But a new GP had told me categorically to STOP, as I do not need them at all now with my levels at 700......... I have been off them for a few months and the symptoms of dizziness, weakness, gait problems, bleeding gums ..... to name just a few.... did I forget memory issues? sorry

They still want to find MS........ I would be much happier with B12 deficiency.... possibly caused by the use of SOMAC 40mg for over 7 years, possibly causing issues with Intrinsic Factor.......... but guy's, I am NOT a medic, so what would I know huh?????

I am feeling sorry for myself right now....... anyone care to comment?

Cheer's from Clare in Tassie

[mrsD]

your doctors are treating you this way.

If you feel better with higher B12 levels, who are they to say to stop using it? In fact in Japan and some other countries, patients with levels below 500 are routinely treated. Low B12 issues
mimic MS. If you Google that you will find many sites which explain that.

Here is Rose's website:

http://roseannster.googlepages.com/home

If you come on to our Peripheral Neuropathy forum here, there are other Aussies who use oral B12 successfully that you
can talk to.

You don't have to use injection. You can take the sublingual form easily. www.iherb.com does ship to Australia, and they do allow personal quantities to be imported there.

Longer term use of proton pump inhibitors like you have been doing lead to other deficiencies:
B12
folic acid
calcium
iron
zinc

They have also recently been shown to cause osteroporosis.

I would also suggest you have a Vit D level drawn to see if you are low in that. Many people with chronic health problems are testing very low in Vit D.

Another factor is gluten intolerance. Reactions to gluten in food lead to both malabsorption of
nutrients, including B12, in the GI tract, and also MS like symptoms. Australia has a very active
Celiac community. You do not have to be genetically Celiac to have gluten intolerance however.

This subject of gluten is huge, and here is a very complete reference for you to look over.
http://neurotalk.psychcentral.com/thread1872.html

[erinhermes]

Have they checked you for mg? It can also cause some dizziness (my son called me his "wobbly mom", memory problems, etc.......

My inital symptoms were EXTREME fatigue and nasal speech..........then came the BIG problems........My hemo told me that he was convinced I'd suffered for years b/4 being properly diagnosed.........

I hope you are feeling better today and all is well!

Erin Hermes

[Mcharris]

Thanks for replying

I am gluten and dairy free and it has helped some issues.
I find the IM B12 much better than the sublingual... sadly!
I was not finding the sublingual of much use at all. I was getting it from LEF, which is supposed to be the good stuff. It is not yet available in Ozzy Land. Neither are the B12 patches, sadly.

Docs have this ONE SIZE fits mentallity, which is totally inaccurate for the human body.

I shall read the links you have suggested..... Thank You for writing. No doubt I will write more after reading.

[Mcharris]

I too can be known as Dizzy Lizzy with my wobbles and near falls:
but NO ------ I have not been tested/check out for Myasthenia Gravis....
In fact the only person who has put anything into my ear lately, was a nurse taking my temperature.............. no one is interested because I have this appointment coming up with a mainland neuro...... and I guss they all have wiped their hands of me... and left it to him to (hopefully) diagnose what it is that is sending me 'loopy'!

Thanks again for replying. I reckon I back later after I have read some more.