A long history of me either having B12 difficeny or CFS/ ME

[Jan87]

I wrote in here over a year ago so starting right at the beginning this time.

From 1999 I had chest infection after chest infection, I was working,going to the gym my stress levels high due to an abusive,alcoholic husband he is my ex and not my daughters father,my daughter at the time kept getting into trouble with her friends and it was a nightmare.

In 2003 we divorced but it was still hard with my daughter.

By 2006 I had met someone totally different and we married on my birthday in 2007. My daughter was more settled as well.

From 2006 to early 2009 we all so happy I was very contented but still kept having chest infections and eventually had to leave work in 2006.

In 2009 had bloods done and the b12 showed level of 413, doc said fine but I was having muscle aches, pains all over,vertigo,temperature up and down amongst other symptoms since 2006 ,doc said all bloods normal but thinks it’s depression or fibromyalgia so sent me to reumatolgist and did at that time a test can’t remember what test it was and said I have fibromyalgia, he said nothing I can do as nothing to help it but gave me a leaflet said read this and that was it.For the next two years still getting infections and so many different symptoms. In 2910 again I was told it was depression even though I kept saying I was happy. The doc I saw moved to Canada.

In 2011 I knew I was getting more tired after doing so little but I thought it was the fibromyalgia, .I started to get a form of paralysis ( loss of muscle control).this first time it happened I was at the town centre I parked the car and I went to the bank and started saying what I wanted and my speech went all slurry and I was feeling like my legs were going to give way so I very slowly managed to get back to the car with help from the security guard and sat in the car I don't know how long I couldn't remember,my eyes closed and my body was so week It felt like jelly but I knew what was going around me,it was very strange,eventually I got the feelings back in my body and drove home and I made app with my doctor. When I saw him I was sent for various tests all negative and he didn't know what it was and said everything is fine just rest and take it easy, which I was doing.he called it (my funny turns)and then it kept happening so much more, i was having more of these attacks but the doctor put on my notes depression and anxiety!!!!.I was malagaring!!!. I saw a neurologist who said the same. I just wasn't getting believed.it happened again in the town with my daughter and she wrote it down and so did the security guard who helped carry me to my friends daughters car to take me home,I couldn't walk and had to be lifted to the car and carried to the house and put on the sofa and I came round.

I thought this was fatigue so I was doing less and less and resting more but it still happened, I had gone for a walk and I collapsed on the grass not far from my home I couldn't move at all,I don't know for how long but then I heard voices two boys asked if I was ok and by that time I had come round and I told them where I lived and they got me home safe.This happens anytime as I can be resting,out with my husband,it has come without warning but the last few times I have a heaviness in my arms that has been a bit of a warning for me.it can last anything between ten minutes to an hour and I just have to cope with it I just don't know from day to day if it will come on or not,my doctors are a waste of time and consultants are as well.its not now as bad as it was then, by 2015.

In 2013 I had my gallbladder out I didn’t know I had gallbladder stones had lots of little ones but the pain came on just straight away I wasn’t overweight and didn’t and don’t drink alcohol so why it happened I don’t know doc said just unlucky.

In 2015 I wrote a list of my symptoms and saw a locum doc she said it looks like CFS I was pleased at the time least I had a name for it,although she said nothing can do for it just rest as much as possible, all bloods again normal. by this time I was using a B12 spray from Holland and Barrett which up until three days was using as decided to come of it see how I manage without as using it for some energy.

Symptoms still have are

Pain comes anywhere

headaches/ Migraines.

nerve pain

Brain fog

Exhaustion

Mobility problems

Fatigue

Muscle pain

walking into things, and dropping things.

Vertigo

Temperature fluctuations

sensitivity to noise

sensitivity to light

Blurred vision

Paresthesias ( it's like you have things crawling on your body another strange symptom)

Difficulty understanding speech and getting words mixed up.

Difficulty concentration

Difficulty making new memories as I forget easy

Swollen glands

Dry eyes

Nausea

Stomach ache, stomach cramping

IBS/ digestive problems

Heart palpitations

Night sweats

Muscle weakness most days and joint pain/ recently started with lower arms pain.

Insomnia.

I was sent to a CFS clinic in 2015 the person I saw wasn’t a physiotherapist but he was a psychologist,I wasn’t aware of this and I wasn’t feeling any better,so I decided not to go anymore psychological help doesn't help ME/ CFS.

By 2016 things was getting worse cognitive and neurological issues.

Forgetting how to do things e.g I know you need to put water in the mug and milk and sugar but I have to tell myself that I have to boil a kettle I have a very light kettle and put tea bag in then sugar then milk, I can't just say right going to make a mug of tea, otherwise it goes out of my head, I have to think it through otherwise I forget what I was doing in the first place.

I have difficulty understanding speech so that means someone talking to me takes me awhile to understand what they are saying and I get my words mixed up, when I am talking I know the word but other words come out instead and then eventually the right word does comes out.

It's increasingly hard for me to understand written instructions so my husband has to explain to me quite a few times, still don't always understand.

By 2017 more bloods said all normal put it down to fibromyalgia and CFS but it was more then fatigue was getting even more strange symptoms.

My cholesterol then was 4.8 I was eating veg and hardly any meat and eggs, I had some privately tests done in 2017 as a volunteer for a ME group and it came back with I was

deficient in most vitamins especially B

Vitamins and my Homocysteine was 18 I didn’t even know what Homocysteine was or much about vitamins but I was told to eat red meat, pork, eggs etc so I have done for a year now I still have veggies as I like vegetarian food but it’s a balanced diet well I think.

Last year I was trying to explain to my doctor about Homocysteine and Amnio acids but a waste of time he doesn’t understand and I wrote to my MP as well to try get him to send a letter to the GP and the GP said he has wrote to the immunologist who I saw in 2015 to see what he says about it all but it was of time seeing him then so doubt anything changed.

Last year also a lot of stress as we was trying to move and then it didn’t work but took a lot out of me and had two cancer scars but thank god turned out negative, from last April to September so much stress but by end of September hardly any stress so you would think things might be a little easier but it’s not as start of October my weight has gone lower never had it this low as I am only 4ft 10 but it’s 7st 8 and not been that since I was in my twenties and now I am 59 plus eating more my doc said it was the same in the summer but it was a few pound more around the 8st 3 mark.

I now have Altered time perception, feeling spaced out and not quite real somehow that’s since the start of October also when I am looking at things it’s like a 3D effect. I have appointment next week at opticians.i also have a buzzing in my head think it’s Tinnitus not sure all came on so quick together.

What I want is to have the Amnio Acid screening and the Homocysteine blood test.

I rang doctors today to see if they heard back from the immunologist as doc sent letter on the 7th December and receptionist said there is a letter there and to ring the doctor tomorrow I am not living in hope.i really don’t know what to do as everything is too much and not going no where and just getting worse.

I also had a B12 blood test done last October and as was still on the B12 spray it said 1500 and gone from 751,the doc said no way could I have B12 injections with blood test reading that as way above average but I tried explaining that just because it says that it doesn’t mean that all the B12 is going into the cells but he said he didn’t understand about B12 so writing to the immunologist about it, I was asking about B12 injections because I heard it could help some people with ME.

[Nackapan]

Some of the symptoms you have described sound very familiar. Happened to a family member. Took years time come to a diagnosis after being told it was anxiety , fibromyalgia, chronic fatigue . Seeing rheumatologist, neurologist gastro ect . It turned out to be an autonomic disorder and pots

This was after going through a and e so many times. A doctor there ordered more tests . Starting with testing for Addison disease. After then being referred to another hospital . Alot of testing later the problem diagnosed.

Perhaps ask for autonomic testing. I realise so many symptoms are very similar for different problems. I felt I should mention this as hard to diagnose . Keep going until you find the bright mind that can diagnose you. Hope you get answers soon. And then right treatment

[Jan87 in reply to Nackapan]

I think because I have had so many tests done and seen so many consultants they won’t do anymore testing,I don’t think I still have a proper diagnose yet and I just get worse.

Which symptoms sound familiar?

What is an autonomic disorder?

Sorry for all the questions.

I have never been tested for POTS because the symptoms of not been able to stand and feel dizzy when stand I don’t have as can get out of bed ok and don’t feel dizzy.

Addision disease don’t think been checked for that either.

You just know your own body and it’s far from right.

I also now have panic attacks, low mood, or depression, have anxiety and I am so anxious. I have gone from been out going to a mouse who is afraid of everything.

I have no self confidence either. My concentration level has got so much worse I can’t concentrate at all.

I can ask for the testing see what is said I can’t go private as my husband my carer and we are on benefits.

I really don’t know if I will ever find that bright mind to diagnose at all.

Thank you.

[fbirder]

If you are absorbing B12 from the sprays (and you certainly are to get levels up to 1500) then having injections will not help. You already have lots of B12 in your blood. The cells cannot tell where that B12 came from - sprays or injections. So having injections will make no difference.

An amino acid screen will tell you nothing useful.

You want an MMA (methylmalonic acid) test. If that is high then it may mean that B12 isn't getting into your cells.

Have you been tested for folate? Low levels of that can cause raised homocysteine although yours wasn't very high.

[Jan87 in reply to fbirder]

Right I see but I stopped using the B12 spray three days ago to get a proper reading as have to wait four months without it, should I go back on it I don’t know what to do.

Amnio acid I had showed lots of vitamins and minerals I was lacking that’s why I though after a year to have another one.

So can I have the MMM test done even with me showing high reading of B12 and would I need to stay off the spray or go back on?

My test for serum folate test was last January was 12.7

Serum ferritin 63

B12 then on the spray 751.

But I wasn’t then having these other symptoms I am getting now.

[fbirder in reply to Jan87]

The acid test is a lot of woo-woo. It is used by con artists to try and sell vitamins and minerals.

The spray is getting absorbed. That almost certainly means that any symptoms you have are not caused by a B12 deficiency. However, in very rare cases people might have a functional deficiency, whereby they have high blood levels of B12 but little of it gets into the cells. An MMA test will help determine if that is the case with you.

[Jan87 in reply to fbirder]

I am still waiting for the doc to ring, going to ask about having a MMA test if he says no will try find money to go private at Nuffield centre in Newcastle upon Tyne.

So that should show if B12 getting in or nor not?

Because I only been off the spray three days will it still be ok to have the test?

[fbirder in reply to Jan87]

That depends on what you want the MMA test to show.

If you want to show that you have lots of B12 in the blood, but not much getting into the cells then you need to have lots of B12 in the blood - keep taking the sprays.

If you want to show that you don't have much B12 in the cells if you don't have much B12 in the blood, then you need to wait a few months with no supplements.

[Jan87 in reply to fbirder]

I just want to feel normal again., I came of the spray so I could get a normal reading of B12, I thought having the MMA test it would show true levels without me taking the spray I didn’t know I would need to wait months for a true reading to have the MMA test though. I know with B12 you have to be off months as taking any supplement will skew the result but I didn’t know the same with having a MMA blood test.

[Nackapan]

In reply. Most symptoms apart from swollen glands. Hypermobility .Elhlers Danlos. pots do give absorption gut issues which absorption probkrms of b12 as well giving more symptoms. as can different food can be a problem .to digest. Autonomic is describing functions that normally happen automatically in your body. So an autonomic dysfunction can be like a blood pressure change that doesn't happen automatically as it should. The trouble is when you read up on these things many symptoms are similar. There might be things that stand out to you though. Keep going to get different referrals. The trouble being consultants in different areas of medicine don't communicate to join up the dots. The only one with all the results is your g.p.

Sometime if you write the 5 things that effect you worse. It's very hard to convey it clearly. There is a bright mind somewhere to work it out. Good luck

[Jan87 in reply to Nackapan]

I see so basically certain things I am having are not been automatically like they should be, it’s so hard to explain because I am each day finding it harder to understand and learn never mind explaining to the doctor who things it’s alk depression as I feel like I am depressed because all what is happening but I know I am not it what’s making me feel like this causing how I feel and I don’t know after ten years what it still is.

I will try ask for referrells but they don’t want to do any more.

I can write down five things for one thing I am scared I am getting so much worse and I nearly had Breakdown last August and don’t want that again. I will do that thank you so much.

[Josoap]

This really sounds very similar to me years ago diagnosed fibromyalgia 2010 and same here’s a leaflet but I wasn’t depressed but wasn’t convinced.I’d had a few times my left side would go I couldn’t co ordinate Dr thought I’d had a stroke but no. I was diagnosed a year later with autoimmune thyroid disease hypothyroidism but Symptoms just got worse. Until I saw a dietitian as I was struggling to lose weight despite hardly eating. She ran a Coeliac test and it came back positive, I had an endoscopy which confirmed my B12 was low but couldn’t tolerate any form so left. That for me was the turning point in my life since going gluten free muscle joint pain subsided and stopped, the chronic fatigue went weakness improved brain fog etc etc etc but if I ever slip up it’s like a switch my body shuts down I need to sleep I lose co ordination excruciating joint and muscle pains itching etc etc. Have you ever had a test for this? It’s not done usually unless requested.

[Jan87 in reply to Josoap]

With me before I had gallbladder out my weight was high I was over 9st but eating ready meals then I was overweight as I am only 4ft 9.

I didn’t know it was my gallbladder effecting my weight. I had it out and had to loose weight so got weight down too 8st 3 and no one gave me advice what to eat I stayed that weight from 2013 to 2017 but after gallbladder out my husband made me home made meals which we eat now but since last year I have lost weight and craving more food especially chocolate but weight doesn’t go up it’s now 7st 8.

So weight loss yes but doc says it’s not dramatic so it’s ok but I am 59 I haven’t been 7st 8 since I was in my twenties.

A coeliac test I don’t know if I have had I can ask doc.

I didn’t know can tell if low in B12 by having a endoscopy I am sure I had one as had so many tests.

[Josoap in reply to Jan87]

The endoscopy is to see if Coeliac and it’s Coeliac disease that has so many similar symptoms usually weight loss bit I was opposite. Plus Coeliac can be the cause of so many deficiencies it’s just worth a try

[Jan87 in reply to Josoap]

Right I see thank you? I ask about that when I see the doctor.

I just seem to eat what I like now and not put on weight which is strange in itself.

On top of everything else.

[Zumbaaaaa]

Julie87 are you on any other medications?

[Jan87 in reply to Zumbaaaaa]

I only on sleeping pills been on for years that’s all.

[Zumbaaaaa]

Do you mind sharing which ones your journey resonates with me

[Jan87]

Loprazalom 1mg