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Long running health problems; need fresh ideas

(34 Posts)
Katymac Thu 26-Nov-15 16:59:54

I have diagnoses of ME/FM/IBS and I feel sometimes this masks another condition

I also have (have had?) Deficiencies in Vit D, B12, Iron, Folic Acid & Zinc

I've seen several gastro people (& had more than one colonoscopy & biospy)and have been diagnosed with "a very fast transit time" which tbh I consider a symptom rather than a diagnosis and I really don't have coeliac.

I've seen several rheumatologists who have excluded RA and diagnosed the FM

I saw a neurologist in January and my pain isn't a result of the B12 deficiency & I recently found out I have been over doing the B12 a bit (spots/acne as a side effect of over doses)

My mouth ulcers have greatly reduced with the zinc supplements but I still have a lot of pain (joint/muscle/bone & constant headaches), exhaustion & awful IBS unless on a very strict FODMAP diet (intolerant to milk, eggs, almond, coconut, fruit, pulses, anything grainy or bitty)

More recently I have had new symptoms of dizziness, queasiness, blurred vision

The GP thinks I'm depressed; which to some extent I am but I have a lot going on & I'm always poorly - I use a lot of talking therapy and I have good family support but I don't feel I need antidepressants at the moment - I have needed them before but I think I'm OK now

So where do I go from here?

Badders123 Thu 26-Nov-15 19:09:29

Gosh Katy I wish I knew! sad

Badders123 Thu 26-Nov-15 19:15:38

Bugger sorry posted too soon!
I have had a colonoscopy today for long standing bowel issues.
I was dx with glandular fever when I was 18 (I'm now 43)
Then got very ill after flu in 1995 which ended in a dx of me/cfs in 1997.
Cue many bouts of illness - suspected brain bleed, opportunistic infections, bowel problems and period issues.
Mum is coeliac but I'm not although I am gluten intolerant.
My test today showed nothing.
I am going to try a low fodmap diet too from today
I was dx with fibro 3 years ago - not sure I agree tbh
I'm currently having awful peri menopause symptoms and recurrent utis sad
Back to gynae next week!
No advice but lots of sympathy x

Katymac Thu 26-Nov-15 19:55:54

My recurrent UTIs & thrush has taied off with the supplements - but who knows which one hmm

So many infections; also tested 4/5 times for glandular fever as a teen & diagnosed with CFS after a bad infection in Oct 95

Apparently I haven't started the change yet (47 - my mum started at 38)

Quite similar symptoms I guess

Badders123 Thu 26-Nov-15 20:08:26

Both my mum and sister had hysterectomies by the time they were 38 so i guess I'm not doing too badly smile
I'm convinced my health issues stem from the gf I had when I was 18.
The Epstein barr virus is a bitch and as I get older I worry that I will end up incapacitated eventually.
It's weird. If anyone who knew me heard me say that they would laugh.
I put on a pretty good show sad
I am on menopace plus and they have helped.
Just waiting to hear if my Urine sample has grown anything in the lab.....

Badders123 Thu 26-Nov-15 20:10:22

Have you ever been referred to an immunologist?

Katymac Thu 26-Nov-15 20:14:22

Why would I need an immunologist/rhemu/blood/some other specialist says my GP - I'm just depressed?

I'm definitely getting worse

I was ill before the GF tests - I had Mumps/measles/german measles/chicken pox & whooping cough all within about 18/20 months (my poor mum) at about 4/5

puffylovett Thu 26-Nov-15 20:14:24

I would suggest you find a good functional medicine practitioner, one who has access to various private tests to gain further insight.

Here is one in London, but you should be able to find a UK register.

Badders123 Thu 26-Nov-15 20:25:34

I nearly died of whooping cough (apparently, I was only 18m and dont remember)
I'm not saying you arent depressed....God knows I know I am sometimes....but I think your physical illness and its impact is the reason for your psychological illness iyswim?

Badders123 Thu 26-Nov-15 20:26:07

Getting a private consult an option?

Badders123 Thu 26-Nov-15 20:27:32

I only ask because we have done that a few times (for me and the dc) and then taken the recommendations/dx to our gp and gone from there....

Katymac Thu 26-Nov-15 20:32:35

The problem is your GP should really refer you

I've seen 2 private Gastros for all the good it did me

I was quite poorly with whooping cough too

Katymac Thu 26-Nov-15 20:38:57

I feel I have reactive depression, I'm ill, my business is having a bad patch & my dad is terminally ill plus DD moved out

Generally when I have reactive depression I talk my way out of it and as long as I have 'plans' I probably will get out of it. When 'things become hopeless' I'll get anti-depressants. As long as I still get angry, frustrated and happy - I'll work through it maybe

Katymac Thu 26-Nov-15 21:01:41

Sorry Puffy, that's a bit 'out there' for me I think

Badders123 Thu 26-Nov-15 21:21:29

You certainly have a lot going on!
I find I am currently in the headspace of actually wanting them to find something they can treat!
I had my gallbladder removed 2 years ago and my digestion is buggered sad

Katymac Thu 26-Nov-15 21:33:42

If it makes you feel any better I have my Gallbladder & my digestion is buggered too grin

The latest (TMI sorry) is rabbit droppings in slurry hmm

Badders123 Thu 26-Nov-15 21:48:18

I can relate!
Having had to do bowel prep yesterday I will just be glad when it's not water!!!

Badders123 Thu 26-Nov-15 21:49:07

I'm really sorry about your dad x

Katymac Fri 27-Nov-15 07:33:35

Thanks Badders - it is what it is (Lung cancer, Brain Tumour - both 'cured' but he is failing fast)

Woken up this morning in horrendous pain - nothing to do but pop painkillers & go to work sad

Badders123 Fri 27-Nov-15 11:54:05

Oh that's really tough. I'm sorry.
I've lost 11 family members (including my dad) in the last 2 years. It's utterly soul destroying at times.
I'm a great believer that as human beings we can only cope with so much, whether that's psyiologically or psyiologically.
The body can only take so much, which then affects the mind.
Is there any chance at all of getting singed off for a few weeks? Even just til Xmas?
Sorry I don't know your cirsumatances but I was told to so that when I was really ill and refused. I often wonder how much quicker I would have recovered had it taken the Drs advice sad

Serioussteve Fri 27-Nov-15 11:59:07

Ask your GP to do a blood test for IgA (Immunoglobulin A) - a high reading indicates autoimmune disease, in many people with ME/Fibro it points to Lupus.

Badders123 Fri 27-Nov-15 12:20:06

Steve...I have had 2 positive tests for lupus.
But they wont dx on that alone.
I have to get worse.
Despite the fact I have been suffering from nefritis for the last 2 months - a major symptom of lupus sad

Katymac Fri 27-Nov-15 21:06:48

Just collected 4 sheets of blood tests saying everything is perfect

So down

Badders123 Fri 27-Nov-15 21:21:33

Mine always say that too, Katy.
In fact my fecal and urine samples are back today and "normal" why am I on abx for a urine infection!?
Any thoughts on being signed off?

Katymac Fri 27-Nov-15 21:23:24

I'm a childminder.......

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