Desperate for answers.

[Clairel1985]

Doctors don't know what is wrong with me which has left me with no option but to try and find out for myself.

I've been unwell and very run down for years but in the past year my health has really deteriorated and the symptoms have become very debilitating.

Symptoms

Pins & needles in my hands, feet, face, head, arms and legs.(1 year)

Headaches, pressure and burning in ny head (past 6-7 weeks)

Pneumonia and pleurisy and costochondritis.

Trouble swallowing.

Pain when food hits the top of my stomach, constipation, swollen abdomen, acid reflux, hiatus hernia, ibs, diverticular disease.

Interstitial cystitis/painful bladder syndrome.

Multi nodular thyroid goitre, previously borderline underactive but never diagnosed though i was put on Levothyroxine for the goitre.

Mouth ulcers and lumps at back of mouth in my throat.

Sinus infections.

Dizzy spells, off balance, weakness, shaking, feeling drained and faint.

Sore swollen eyes, was treated for allergic conjunctivitis but it wasn't that as treatment didnt work. Painful when i move my eye, extremely sensitive to lights and daylight have been wearing sunglasses for 3 week.

Swollen hands and face.

Very sore, stiff joints especially in the morning.

Sore neck and spine.

Flank pain on both sides.

Skin rashes and itching.

Hair breaking.

Dry skin, hair and eyes.

I was told last week my folate was low.

I had low cortisol a few years ago and low B12 then also but never followed up.

I get low iron quite often.

Heart palpatations, purple lips.

Exhaustion, can hardly walk.

I have made a private appointment to see a Rheumatologist because doctors seem to thinkit is fibromyalgia and anxiety andi know it is not.

Eye casualty said possibly an autoimmune disease of MS.

Bloods as of a few weeks ago

Folate 2.4

B12 364

HBA1C 36.0

Things have got so bad i actually feel like it is becoming life threatening.

[Rheadster72]

I'm no expert but that folate looks low to me. Your B12 is similar to where mine was. My main symptoms were the pins and needles etc. Dr thinks I'm anxious etc - pretty much the usual saga. I saw a haematologist privately who advise I go on a trial of B12. My next stop will be a rheumatologist although the only condition that might fit my symptoms is a vasculitis my mum had. Did your Dr not comment on your folate level?

[Clairel1985 in reply to Rheadster72]

Hi thanks for your response.

My GP prescribed folic acid.

I have managed to get an appointment witha Rheumatologist this evening privately! I am having an MRI of my head and spine this week also.

Ive been told that the pinsand needles are anxiety too but I'm not stupid i know they are not.

I've been told it could be MS or an autoimmune disease.

I just want answers.

What ever it is i will deal with it but i need to know what so i can get some sort of treatment to help.

[Rheadster72 in reply to Clairel1985]

I am pretty much in the same boat as you. Although generalised anxiety disorder can manifest with similar symptoms, the GPs seem to be way to quick to diagnose that and stick you on some horrible drugs than even consider a B12 issue and relatively innocuous treatment. I totally feel your pain. Good luck with the rheumatologist. Hopefully the MRIs don't show up anything sinister, although I had pinned my hopes on the MRI showing up something and felt a but dejected when they came back just indicating I had the wear and tear of a 40 year old bloke! Would be worth seeing a haematologist as your next course of action is nothing comes back rheumatological. Are you UK-based?

[Clairel1985 in reply to Rheadster72]

Yes I'm in the UK.

Just seen the Rheumatologist and had some blood tests done to check for an autoimmune disease.

I had an MRI of my spine a few years ago which showed alot of wear and tear in my spine and neck and a bit of arthtitis and apparently my neck is sitting to oneside causing hiatus hernia. Though I've never had a neck injury.

My MRI of my head and spine is in two days.

I hope you feel better soon.

[Peepsdog]

I'm sorry you are feeling so terrible. Have you been tested for celiac disease? You clearly have some malabsorption of some sort. I have celiac it has caused so many nutrient deficiency including the b12, folate, and iron. I hope you get the treatment you need. After my diagnosis I started the GAPS/paleo autoimmune protocol it really helped with so many of the symptoms especially the stomach discomfort and interstitial cystitis. But make sure you continue to eat gluten until you get a celiac test. I hope you find the answers you need soon.

[Clairel1985 in reply to Peepsdog]

I was tested for celiac disease a few years ago.

I have another sinus infection today and sore ringing ears.

My stomach is very swollen and pain down my throat into my stomach, alot of pain and burning above my belly button lots of mouth ulcers, coated tongue and white bumps on tongue and back of throat, every time i sit up or stand up i burp 10 to 15 times and can't stop. I feel weak and drained.

My hair is breaking my skin, lips mouth etc are very dry!

My joints hurt so bad and are very stiff, my spine hurts.

Feel awful! So glad to get nice people who understand.

I don't feel like doctors are taking me seriously

Thank you

[Peepsdog in reply to Clairel1985]

Ok glad to hear that you were all ready tested. You may still try the GAPS and AIP paleo it has a very nourishing and soothing affect for the body. I wish I could help you more I was very lucky to have found a holistic health practitioner that was able to help guide me. I do know that the human body is very resilient and capable of healing hold on to hope and do some healing meditation while you are searching for answers. Honestly there were so many times where I have felt truly desperate in my attempt to heal and the healing light guided meditation from the honest guys it's free on youtube can really help calm you when the fear and desperation set in.

[ITYFIALMCTT]

I hope that the tests reveal something clear that has a straightforward treatment path. Auto-immune illnesses are a mess and it doesn't seem unusual for someone to have a fibromyalgia diagnosis before or after the diagnosis of another auto-immune condition.

[Clairel1985 in reply to ITYFIALMCTT]

Thank you!