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To ask you to diagnose what the hell is wrong with me because I'm at my wit's end.

(105 Posts)
Welcometotherock Fri 12-Apr-19 12:05:07

Hospital appointment today. I've had symptoms for five years.

Joint pain, bladder and bowel issues, headaches, blurred vision, dizziness, intermittent weakness (feels like a minor stroke, can't lift a kettle, numbness, dragging leg behind me.
In constant pain, falling.

Been to the GP and hospital and told it's not arthritis, not muscle based.
Neurology last time told me that they was broken eye persuits and issues with rotation of joints but no known reason.

Seen today , a two minute appointment which told me there was no neurological signs at all (even though two weeks ago was told there was)

Only interested in my anxiety tablet (I had these issues way before anxiety)

And discharged me on my memory way to carry on with the lack of any qualify of life I currently have.

What the hell do I do next sad

Welcometotherock Fri 12-Apr-19 12:06:01

*merry
*Quality

Triangled Fri 12-Apr-19 12:07:25

Before all your symptoms began were you on a course of fluoroquinolone antibiotics, even within a few months? Ciprofloxacin for example?

Preggosaurus9 Fri 12-Apr-19 12:07:45

Chronic fatigue syndrome?

Pollaidh Fri 12-Apr-19 12:14:48

Would you describe yourself as double jointed? Joint Hypermobility Syndrome would account for a lot of these symptoms.

swingofthings Fri 12-Apr-19 12:19:41

How old are you?

bestsquirrelinthewholehole Fri 12-Apr-19 12:20:18

MS? Fybromyalgia?
I have Fybromyalgia and have a lot of your symptoms. Except the leg dragging. Pain, tiredness, memory issues, nerve pain, weakness, joint pain.

Grumpasaurous Fri 12-Apr-19 12:22:17

Transverse myelitis (not sure on spelling) a friends ex partner had all these symptoms and that’s what it turned out to be.

Yogagirl123 Fri 12-Apr-19 12:27:24

I have MS, symptoms sound familiar to me.

Have you had MRI, head & full spine?

There are other conditions that a Neurologist would need to consider, seems to be the process with MS in my experience, ruling out other conditions first, MS can be very difficult to diagnose.

Inthemane Fri 12-Apr-19 12:36:53

I came on here to say a MRI to look into MS but a couple of people have already mentioned above.

Did the neuro communicate why the results had changed? PALS at the hospital where you saw your neurologist can help. I'd write out a list of your symptoms and what happened in your appointment to raise it with them.

A lack of smooth eye pursuit can be indicative of certain conditions, so it's worth finding out why they didn't pursue this. If you're on a very high dose of anti anxiety meds this can also interfere with pursuits but they should have discussed that with you and it doesn't explain your earlier symptoms. Sorry to hear you're going through this.

Cjt110 Fri 12-Apr-19 12:56:41

I's day CFS/ME (I have it and it's so vague with no diagnostics... took 2 years to be diagnosed) perhaps coupled with Fibromyalgia

The "tests" for both of the above it basically to rule everything else possible out 'til ME/CFs or Fibro are all thats left. I had to be referred to another hospital trust in the next city and funded for my diagnosis.

Divgirl2 Fri 12-Apr-19 13:04:54

Chronic Lyme disease? Assuming MS has been ruled out.

Japonicaflower2 Fri 12-Apr-19 13:05:02

Vitamin D deficiency? A work colleague had similar symptoms, had to be hospitalised for intravenous therapy.
DD had slightly fewer signs, is on mega doses of Vit D and being monitored.
It must be very worrying OP, I would ask GP for a second opinion.

Welcometotherock Fri 12-Apr-19 13:05:50

Thank you. I want to cry. I feel so rubbish all the time but no one will help.
MS has been mentioned several times. I had a MRI five years ago and they said on that that it wasn't abnormal and they couldn't persuade themselves it was MS.

I don't know about Antibiotics not that I remember but I did have a lot of operations and two post op infections.

I was told at the ortho clinic I had mild hyper mobility but not enough to account for everything.

My gp won't diagnose fibro as it's just something given when they can't diagnose anything else according to the GP.

I'm just so fed up .

Celebelly Fri 12-Apr-19 13:08:08

Make sure they've checked for Lyme Disease

pisspawpatrol Fri 12-Apr-19 13:08:47

There could be many reasons, but two outlying possibilities could be coeliac disease (I've heard of gluten poisoning causing some similar symptoms in one case) or a tick/lymes disease.

Nousernameforme Fri 12-Apr-19 13:09:00

b12 folate deficiency?
www.nhsinform.scot/illnesses-and-conditions/nutritional/vitamin-b12-or-folate-deficiency-anaemia
Are you vegan or do you have celiacs/gluten intolerance?

tensmum1964 Fri 12-Apr-19 13:14:13

Menopause?

LividLaughLove Fri 12-Apr-19 13:19:41

Have they checked your thyroid function recently?

Donttouchmycoat Fri 12-Apr-19 13:37:28

Have you been sterilised using essure? The coils used for this can cause all manner of problems including some of the ones you have listed

femidom12 Fri 12-Apr-19 13:39:05

Jesus you must be desperate if you are asking on here.

Triangled Fri 12-Apr-19 13:58:00

I don't know about Antibiotics not that I remember but I did have a lot of operations and two post op infections.

Quite possibly then. Any way of checking your medical notes? If you were on Cipro/Levaquin/Avelox (or anything with flox or quin in the name) you could be suffering from fluoroquinolone antibiotic toxicity syndrome. Symptoms are vast but can include neuropathies, tendinopathies and neurotoxicity (e.g. tendonitis, tendon rupture, joint pain, achilles tendonitis, plantar fasciitis, muscle wasting, tingling in hands/feet, dizziness, brain fog, sense of doom, depression....to name but a few!)

Lots of resources here:
patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

Triangled Fri 12-Apr-19 14:04:10

P.S. Add profuse sweating at night to the above list! (Speaking from experience. I visited several GPs..all claimed nothing was wrong. All tests (including MRI of brain) were normal so docs concluded it was all in my head. This was 10 years ago and before FQ toxicity was a recognised thing. )

Welcometotherock Fri 12-Apr-19 14:14:54

'femidom12

Jesus you must be desperate if you are asking on here'

Totally desperate. More in the hope at this stage that someone will say I have all those symptoms and have ...

Just so I have something to ask the doctor about really as I literally have no quality of life and am utterly fed up.

To answer other questions.

I'm 40.
I had menopause at 23 after full hysterectomy.
Been tested for celiacs
I have B12 injections every six weeks. I have been tested for intrinsic factor and told it was negative. I have a spray inbetween. Told I'm not B12 deficient now as I'm having injections. hmm

Bit D is periodically low.

UpTheLaganInABubble Fri 12-Apr-19 15:00:47

I would bet money you just need more b12 injections, and possibly co-factors. I had all your symptoms and need an injection every 2 to 3 days to keep them at bay. If you're on facebook, join the massive support group on there and read the info in their files, it will be life changing

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