Waiting to see what happens next

[kiraminx53]

Last year I was dx with Pernicious Anemia, hope I have spelled that right, just a few days ago, my neurologist gave me the dx of FND, coupled with other complaints that I have I'm feeling pretty crappy at the moment. I have been wading through a lot of the posts and comments here and others places reading up on FND as I had never heard of it until the DR had given me the dx. She has also referred me for a MRI plus Physical Therapy ..lucky me, been for that a few times..it was such fun xxx. Anyway going by what I'm reading here FND seems to be something that they lump you with when you they don't know what's wrong with you, so FND will do, like everything used to get called a virus etc. Before I was diagnosed with PA I had two blood tests and by the time they found out I had it, they said my count was dangerously low, no wonder I was feeling awful. But anyway I know I'm rambling on a bit, but that's what I;m like now, cognitive processes are crap, memory is crap, the other day I stood in the bathroom and forgot how to turn on the tap, I was mortified for a few seconds. I tried to expplain this to the DR but they seem to brush stuff of, and you feel like a idiot or something. I don't know what I expect from them, but something I suppose, something to help with the pain, the confusion, the fog in the head, the walking down the street looking like I've spent most of the day in the pub. Honestly I'm a 58 year old granny and feel like 90, I can't drive my car I,m not safe any more, no sense of judgement. Its so horrible when you feel brushed off by the very people you hope can help, and you can't even form anysort of argument, because your bloody brain won't function and your mouth can't get the flipping words out. Sorry for the rant. xxx

[thinkin]

Hi,

FND is diagnosed with positive signs rather than negative results. If it's being diagnosed properly. Mine was triggered by an asthma attack but I too was lacking B12 as well as vitamin D, B6 and magnesium. It puts you at a higher risk and some can improve with being given B12 in therapeutic doses. B12 and D need to be above 500, B12 is one at least 500, but keep going until improvement.

As you get older you don't absorb vitamin B12 like you once did. If they stop giving you the injections I recommend sublingual sprays. This cuts out the fact that you are not absorbing through your gut. If you ask for your actual levels when they check rather than accepting "normal" as this just means that it's above 200, less than half of what we need.

There's a website b12-vitamin.com that tells you all you would wish to know and more about vitamin B12 and other associated deficiencies (it often doesn't come alone).

Functional neurological disorder was a term that was coined by Prof Edwards when he was at UCLH in London as other titles were proven to be inaccurate in their description. Unfortunately there are doctors out there using the right new term but still treating people in the old "snap out of it" kind of way. Just keep pointing out that the doctors are out of date. Some people print out research and ask their doctors to read it.

You can improve. Have a look on the FND website and take the advice on the Healthy FND Living section. I used to be so pickled I could hardly string a sentence together and I'm only in my 40's. There's supplements to take, dietary advice, pacing, sleep, etc. If you are not up to it ask a relative to read it and see simplify it for you. You also have to keep any of your other health issues under control and optimised.

I'm afraid you are going to have to attack it from all sides, even if the trigger was so simple. Effort and pushing yourself will land you on your backside. You can get worse if you over do things. It's like you have some badly behaved circuits in your brain and if you use them too much they teach other circuits to misbehave, spreading the disruption.

There's never one answer, and it's early days so we have a battle on our hands. You are not alone. xx

[kiraminx53 in reply to thinkin]

Thanks for your reply, I get the usual injections for my B12, plus I take a spray to help it along, as i have stomach and gut problems I can't absorb nothing through there. Plus I have a low thryroid function which doesn't help anything else either. I'm currently looking through things on the FND website trying not to overwhelm myself with too much info, a little goes a long way with me now. Oh what things have come to haha xxx

[thinkin in reply to kiraminx53]

Hi,

I'm much in the same boat too. I have hypothyroid, gastritis, but my GP won't give me the injections of B12, in fact they lied to me and told me they were normal years before I got sick. They should have treated me as I had neurological symptoms even then. I only found out by reading my GP notes at PIP tribunal - I was not happy.

Apparently biotin helps more B12 absorb so I have that sublingual too. I just wish more was sublingual. I've found magnesium oil that helps with most pain, cramps, and even a touch of Raynaud's in the old boobies (men don't know the half of it!). Apparently it can increase your serum levels of magnesium too. Read the reviews on Amazon - other on-line retailers are available

Yes, certainly do one or two things and as you get a grip of them add more. Sleep routine is something that helped me a great deal. I never thought I'd manage it and I always have to be strict with myself or I fall off the wagon and really feel it.

Good luck finding your answers. xx

[Chingona]

I feel you, interacting and trying to communicate with doctors is challenging, these days I barely tell them anything because I’ve felt blown off and because I’m afraid they won’t take me serious and treat me like I’m exaggerating or just plain crazy. The only relief and improvement has been from me trying different things, supplements, diet and experimenting with exercise what feels good. Not once have I benefited from anything a doctor has prescribed.....so yes it’s frustrating and confusing. My memory has improved but I still have those moments where my mind just goes blank and I have 15 seconds of total confusion and I panic, or Other times when I say scissors when I mean to say knife. I’m learning to write everything down and set alarms. I cannot remember people’s names so instead of feeling bad about it, I have given up on it completely and just let it go.i like to think most people don’t notice. Hang in there, I believe there is hope and you can recover, I know it can feel embarrassing being out there staggering but don’t give up, keep going outside and getting fresh air.

[kiraminx53 in reply to Chingona]

To Chingona and Thinkin, thankyou both for your replies, and advice, it seems like such and long and weary road that we travel but at least we are plodding along and we never give up. Like you Chingona I rarely visit my Dr now, frankly I feeel like I am wasting my time, basicaly I can't explain myself properly, and usually they look at me blankly, and they fob me off with some other pills that I don't really want, so its all pointless anyway. My friend seems to be at the DR's every week for various different things, and honestly I don't know how she can be bothered with it all, I couldn't be arsed with the stress and the hassle of it all. But we are all different I suppose. xxx Wiith me its my memory and confusion, plus balance that seems to be at the forefront of my problems at the moment, but no doubt something else will rear its ugly head and pop up to highlight itself just to bug me. That's not to say there's nothing else going on, it s just memory and balance, it s the just standing there like a jerk, forgetting stuff, names, what you are doing, what you are saying or trying to say, why you are there, all that sort of thing, plus trying to hold onto the nearest bit of furniture, wall anything to hold you up while you are doing it. The proverbial drunk with out alcohol xxx