Looking for ideas to what is wrong with me!, (long read)

[HyacinthBouquetNo1]

Could anyone please look over my story and let me know of any ideas that they might have on what is wrong with me? I am at my wits end and just want my life back! Sorry, it may be long, I will try to be as concise as possible, if any more info is needed, just let me know. Thanks to anyone who responds, I am grateful for any ideas!

Basic info: 45 year old woman, about a stone overweight, non-smoker, alcohol only at weekends. Excellent blood pressure, no significant family history, (only there is coeliac in one family member and cancer in another) 3 grown up children, had hysterectomy a few years ago, on oestrogen only HRT patch. Cholesterol is slightly high.

Problems started when I was about 36. Extreme tiredness and dizziness and just feeling weak and awful. Was found to be vitamin B12 deficient, started on injections in 2007, still on them now but no improvement noticed. All other blood tests normal.

Have had diarrhoea all my life, was told it was IBS. Had tests in 2011, normal apart from SehCat test which revealed bile salt malabsorption syndrome. Coeliac blood test negative. Around this time also noticed feeling very nauseous after dairy products, I take Lactase tabs and they help so I presume I am lactose intolerant too. For the last couple of years, I have been suffering from terrible dyspepsia and bloating and pain in my upper abdo/chest area,. I also occasionally wake in the middle of the night feeling extremely nauseous with profuse sweating and then will sometimes vomit but most commonly have violent diarrhoea and then have the chills and shivers for the rest of the night and will feel very weak the next day. Had a gastroscopy recently, looked normal apart from duodenum looked very smooth instead of being all crinkly. biopsy result awaited.

Also had some chest pains a couple of years ago and have sinus tachycardia and coronary artery spasm, on medication.

Now to the MAJOR problems!!, for the last 3 years, I have been so dizzy and fatigued. I also developed some visual disturbances, that I still have. I have had tingling in my face that lasted for a few months. Areas of flesh that feel that they are “creeping and crawling”. Tingling, burning tongue. I have also had an episode of L’hermittes sensation. I was found to be vitamin D deficient and am on a maintenance dose of this forever. I saw a rheumatologist who did a load of blood tests and they were all normal so he diagnosed fibromyalgia, even though I don’t really have painful muscles, just aching, weak legs. I gave up work at this point, as I felt so ill and it is a struggle to even get through the day. Also I have noticed hair loss for the last few years. I look terrible, very pale (everyone comments on it!) I look so tired and have large dark circles under my eyes. I get fatigued very easily and even walking around the block to try and get a bit of exercise tires me out and leaves me feeling ill. As a result, I am very unfit.

Over the last few months, I have noticed double vision on looking left and a sunburnt patch on my thigh which felt slightly numb. GP thought we needed to rule out MS so sent me to a neurologist. Brain scan has showed numerous lesions throughout the brain but radiologist has just written in the report: could be small vessel disease but not typical, not entirely typical for demyelination

Anyway, I have just had a lumbar puncture and visual evoked potentials done and am now just waiting for results and to see the neurologist. And waiting for the gastroscopy biopsy results.

So ladies, (and gents) what would be your first thoughts??!!: My ideas are:

Coeliac – I read it can cause brain lesions but can these also cause MS type symptoms? Bearing in mind my blood coeliac test was negative a few years ago

Cerebral small vessel disease- I would have not expected to see this on brain MRI in someone in late 30s/early 40s and wouldn’t it cause more stroke-like symptoms, and not MS symptoms???

MS- I am thinking this is the most likely diagnosis but then again, what do I know? I am so confused and trying hard not to consult Dr Google

So, I am grateful to whoever has managed to read to the end of this and would love to know other people ideas.

Tests I have had:
All bloods, including thyroid, parathyroid, ANA, etc NORMAL- always normal
Colonoscopy NORMAL
CT enterography NORMAL
Echocardiogram NORMAL
Lumbar puncture & VEPs –awaiting results
Gastroscopy, biopsy result awaited

Thanks for reading so far
x

Yes, I might try and ask if GP will re-test. I had to specifically ask for the original test, seems to be not routinely done.

IF your vitamin d level is low now, (to my mind it is urgent to find out ) , AND you have absorption problems, then you could change the method of administration , to daily sublingual.

If the doctor won't respond or takes too long then :

 You could use the NHS lab at Sandwell, W.Mids. The blood spot test is £28 through the post.    <a class="break-all" href="//www.vitamindtest.org.uk" rel="nofollow" target="_blank">www.vitamindtest.org.uk</a>. Results within a week.  

There are sublingual puffer sprays available from Holland and Barrett, 3000 IU  would be most appropriate for you.   If you have a very low vit d level right now,  then 2 or 3 puffs each day  would be appropriate,  say for 6 weeks. ( then reduce by one spray per day - if you are responding well) This could well be a more absorbable and useful form for you.   That is why it is important to know your current level.

You would be aiming for a level above 100, prefeably 120 to 140. People do have differing responses to supplementation.

Hope this is helpful to you -

BTBH

PS. if you press on your sternum, does it feel like you have bruised it a couple of days ago, ? Also, if you press on your shin bone 3 inches below the knee, does that feel painful, as if it is bruised. ? Yes to either of these could possibly mean that you are below optimal vit d levels. It is not a definative test, but an indication. See my other posts.

Thanks so much for all that useful info on vitamin D, BTBH . I think I need to try and definitely get my levels checked again.

I will find out the results of my duodenal biopsy tomorrow so will update then.

oops meant to say, yes it does hurt when I press my ribcage and leg. I just presumed it was fibro as the rheumatologist said this was what I had last year.

UPDATE

Meant to update sooner but forgot login details!

Anyway, good news, I do NOT have coeliac disease, yeeeaaah! So I suppose we can cross that off the list of a cause of these brain abnormalities. We are going with a diagnosis of functional dyspepsia at the moment, (I do have IBS and bile salt malabsorption) but I am having an ultrasound to check for gallstones and to see a dietitian regarding controlling symptoms with diet, there are a whole load of foods that I cannot eat as they make me ill ATM! So I hope that helps

So I guess it is now just a case of waiting to see the neurologist once the results of the VEPs and lumbar puncture come in. I am feeling a bit stressed and worried in case it turns out to be MS, oh well, another hurdle to get over

Hi again, hyacinth ,

thanks for updating us on your good news about coeliac...!! I note that you mentioned that you do have bone pain , sternum and shin bone , also , that you appear to be lactose intolerant. For this reason (I presume) you probably consume less dairy ? , or no dairy ...? I wonder if you do compensate for this by consuming other high calcium foods. ? Sardines , with bones in ? etc. Plenty of dark greens ? ( which are so good for you in many other ways as well ).

As you can see in the other thread that I posted above , 50% of people with fibromyalgia symptoms have vit d deficiency. You mentioned a level of 41 ( which is insufficient) after 3 months treatment , by which time your level should have been around equilibrium. This indicates that your treatment was not successful at that time , and most likely needs augmenting. ( Malabsorption ? )

I do think that you are very probably insufficient in Vit D , right now. Our human ancestors had a level of 120 to 140 , , throughout millions of years of evolution. In our bodies this vitamin is converted into a hormone (1,25, D3 ), and is used throughout our cellular apparatus to regulate many of our bodily functions , from digestion, brain function, nerve function, immune function, muscle function etc etc.

My advice would be , to get your level checked, and get it up to a level with which human bodies evolved. Your current level seems to be 1/3 of that level, or thereabouts. Quite a few people in this country are in similar territory,maybe not quite so low to start with. Your original report of 18 ,is actually at the level rickets would possibly be seen, in younger people. In older people the effects would include bone pain, often diagnosed as fibromyalgia. Please bear in mind it does take quite a few months to improve. You must get calcium, protein, magnesium, folate,Vit K etc within your diet or supplementation. No doubt your dietician will advise.

I do wish you the very best.   If you want any more info  with regards to vit D , please do get back to me .  

BTBH

Thank you BTBH, lots of good info there