Newish, Confused and struggling

[SuzanneM]

Hello, thought it time to introduce myself as I have been lurking for a few months now. I'm 43 and have been increasingly ill over the last ten years 😕 It started with just mild tingling/ prickles in the left side of my face, at this time I had already been diagnosed with endometriosis and had several camera ops to sort, which Drs said had worked but I was still in severe pain 😕. I was referred to neurologist and had a MRI, they could find nothing and nothing was done.

My list of symptoms are now as follows, I have been diagnosed with fibromyalgia, Raynaud’s and paresthesia which occurs all over! Fatigue, especially in the morning when I need to get up but I do have trouble sleeping some of the time too. Lack of balance especially at night when I'm trying to get to the bathroom in the dark but I also stumble for no apparent reason at anytime.

For some time now my gums bleed when I brush them and I keep getting a sore on my gum, roughly in the same place where I had a tooth removed many years ago.

My hair used to be lovely and thick but now it is thin and brittle with a generous sprinkling of grey which doesn't seem to get worse. I also have dry scurfy skin on my scalp but also my skin all over is very dry but will not absorb creams at all. All my nails are weak and break easily, they also seem to have gained ridges which run from the cuticle up and they often split down the ridge.

I have had around 10 or 11 MRIs now and the specialist does not think I have Multiple Sclerosis but I do have inflammation in my lumber region of my spine. No one wants to listen to me, they just keep pushing me to take this and that drug which don't work and doesn't find the cause just hides some of the symptoms!

With all this I am not able to work full time so money is in short supply. Last Monday I had had enough so went to see the dr and tell him how fed up I am of not being listened to. I've not seen this one before and he was understanding and organised another general blood test and I am going back on this Monday to get the results and see where we go from here, I have asked to see a haematologist as I think I have a b12 deficiency buy my blood tests always come back 'normal'. I really don't know what to do now 😕

Photo is of my 'baby' Luna who keeps me sane and active as we do agility together and I show her ❤😊

[Newberryk]

I know how you feel with being ignored by the doctors Iv not felt well for a while I have terrible nights sweats and insomnia if I'm lucky il get 2-3 hrs of sleep a night Iv lost of a stone in weight my mouth cracks and bleeds my gums bleed Iv lost 7 teeth 4 removed and 3 fell out my hair falls out in clumps some days Iv got absolutely no energy and feel so week I work 12hr shifts as a nursing assistant in a hospital Iv been to the doctors I don't know how many times to be fobbed off time and time again it was the nurse practitioner who actually decided to do something I had myB12 checked and it was extremely low a reading of 95 and my folate was low to so Iv been having b12 injections 1 every other day and having been taking folic acid tablets I feel so much better the nurse said Iv probably had this for a long time but not one doctor has ever bothered to check my B12 now Iv been diagnosed somethings being done but I'm at risk of other damaging conditions my balence is terrible always wobbling and bumping in to things leaving big bruises which is all done to this condition

[SuzanneM in reply to Newberryk]

The neurologist would rather I had MS or Lupus or the like, he's desperate for me to have a lumber puncture but for me it's a Very last resort! I'm sure it would be cheaper for me to have a b12 trial than a lumber puncture!

Sorry you've had to get so bad before anyone did anything 😕 I think it's wrong that they don't listen to us, we know our own bodies!

[SuzanneM]

My last blood result just said b12 normal, vit D low 😕 I will get a copy of this one. My Endo was so bad I fought and won to have a hysterectomy, they ended up taking everything including all the muscle round the cervix as it was deep in the muscle.

It took a throw away comment by my neurologist re b12, I came home and looked it up and was shocked that I had most of the symptoms - my score is 78 on the PAS website 😳

[Marz in reply to SuzanneM]

Normal is an opinion not a result 😊😊 Have you been tested for PA ?

[SuzanneM in reply to Marz]

No, when I ask they just keep doing the usual full blood count test 😕

[Marz in reply to SuzanneM]

Please ask for the tests to rule out PA.

[clivealive Forum Support in reply to SuzanneM]

Did they use nitrous oxide during your surgery - if so this "knocks" your B12 level for six.

[SuzanneM in reply to clivealive]

Don't think they did but the op was at least 6 years ago so would think it would have righted itself by now?

[clivealive Forum Support in reply to SuzanneM]

Ah OK - I just wondered thinking the op was more recent. I guess you would have recovered your levels by now.

[Marz]

What was the result of your B 12 bloodtest ?

I am also thinking thyroid - judging by the symptoms you describe. The symptoms of both conditions can and do overlap.

Docs often say normal when they mean in range - but where you are in the range is key. Always obtain copies of your test results with ranges so you can post here for advice.

I am not a medic - just a Hashimotos girl with a B12 issue 😊

Happy to help .....

[SuzanneM in reply to Marz]

The report from my oct blood test says ~ Serum vitamin B12 (AC4073) - normal - no action, it also has thyroid function test (AC4073) - normal - no action 😕 I will see what the latest test says x

[Marz in reply to SuzanneM]

Do you have the actual result of your B12 and Thyroid - other than normal - no action ?

The Thyroid Tests are - TSH - FT4 - FT3 and the anti-bodies Anti-TPO & Anti-Tg. The TSH alone does not tell you the full story - in fact very little.

The letters and numbers in brackets are test codes.

If the B12 range is 180-900 and your result is 185 then you will be declared normal. Your symptoms should also be taken into consideration. Sadly neurological symptoms can appear at levels under 500 I have read ....

[Morayshasha]

I really sympathise. This forum is so informative and supportive. Try not to get too disheartened. Good luck.

[SuzanneM]

I'm really pleased to post that the Dr looked at my latest blood result and has agreed to refer me to a haematologist, he has taken my copy of the PAS b12 test that I had printed out and will send it to the haematologist, he said something about my immune function or something not being right 😕 I would attach a copy of the actual blood test results but I don't know how to! 😏

Thank you to everyone who took the time to comment, I hope you are having as good a start to the week as you can xx🌟