feeling very down during diagnostic limbo

[MovingAgainOhWhy]

Hello Everyone

Sorry long post

I have been having health problems for a while but the last year has been worse.

For years I've had general aches and pains, I am late twenties and this has been going on since teens, repeatedly been to GP and had loads of physio over years. Had blood test for RA 7 years ago but it was negative. Shoulders and hips were painful at that point after my DS 1 was born. Also lots of chest pain, but heart/lungs fine.

But about a year ago I started to get tingling in my legs, quite intense and painful at times and constant - slowly getting worse. So GP referred me to Neuro who's done an MRI of brain and spinal cord. He's given me preliminary results after he had a quick look himself, he said doesn't appear to be any inflammation of central nervous system so MS unlikely, but to wait for official radiologist report in case of subtle changes.

He doesn't think tingling is a pinched nerve after consultation. I asked if it could be rheumatalogical, he said unlikely.

I am waiting for official MRI results now but struggling as my legs tingle/ache constantly, and they are weak and I get aches in them from standing/walking short distances. Sometimes if feels like I've pulled a muscle for no reason. And now my hands feel crampy and stiff all the time. Struggling with typing, peeling potatoes, getting my toddler dressed etc. Plus shortness of breath (GP says possible Asthma). And fatigue. I have chest pain on one side, not heart/lung. Vision problems and dizziness. I do have mild scoliosis in my lower back, apparently not enough to have any affect on much and, also, reduced movement range in both shoulders.

Also, my blood results are all very good (had the standard tests recently), B12 and D all good, TSH good, ferritin good, all biochemistry good, actually all very good according to doctors, not remotely low/high. Bloods done very recently. EOS level slightly high though. I don't smoke, drink, I have a healthy diet, I'm young, not overweight yet feel physically weak and drained.

I am starting to feel very depressed, struggling to be a SAHM to my kids, one GP I saw recently has been dismissive of my symptoms and tried to offer me anxiety meds. And I just found out I have a family history of Lupus. So I am starting to suspect something autoimmune, but have no idea what.

How do others cope with this diagnostic limbo?

I am struggling with my symptoms, feel like my body is taunting me and I am worried I will just be labelled a hypochondriac by a GP soon. And I really don't know what is going on with me 😞 I hope the Neurologist can help me, but I don't feel hopeful about getting anywhere soon/ever and it's really affecting my mood.

It’s tough in that limbo period that for some can last for years. You say B12 is good but the uk have a very low threshold for what’s considered ok.
The very fact you’ve got lupus in your family should make the Gp take notice, have they done any ANA bloods?
If you can see another Gp then do so and request a rheumatology referral. The Gp doesn’t generally have specialist knowledge. My rheumatologist is so good at spotting anything that doesn’t present as normal.
Good luck, it’s draining having to fight on top of feeling utterly rubbish.

Thank you for the the reply.

I can't remember my B12 levels exactly but they were on the higher side of the normal ranges and I can remember thinking they were good. One GP thought I might be aneamic and that's why they did the full blood count, and he wanted to make sure my B12 was good. I don't see the same GP very often though and it's hard to get an appointment with the one who did my bloods and is very kind.

Yes its so hard that part of the problem is fighting with GPs. And I do think I need to be referred to a rheumatologist.

I only found about Lupus on my mums side of the family this week and it makes me wonder. Don't think I have had ANA as haven't seen it on my blood results, and I assume it's not routinely done?

Can I ask for ANA test from GP? Or do I need to see a rheumatologist to get one?

Yes Gp’s can order a raft of different bloods to check for different antibodies (ANA included) but quite often they don’t for various reasons.
My rheumatologist is brilliant and keeps my Gp fully informed and if she thinks they’re not keeping on top of something, she’ll let them know.

Brilliant, thanks for getting back to me. I will request ANA blood tests.

It's good to hear your rheumatologist is advocating for you. I need someone like that! I do think GPs miss things sometimes due to the nature of being a 'general practitioner', but some of them don't seem to acknowledge that and seem to think they can diagnose me before the referral to a specialist. Whilst I understand they need to make an assessment for a correct referral, I feel they make their judgements about my symptoms too quickly and, some, seem to think a specialist won't know anymore than them (there is one particularly egotistical GP at my surgery.) He often says 'well you look well', but I'm not sure that should be a way of diagnosing someone?!

It's a bit a tough this Limbo and if I have to battle with GPs much more it's really going to take it out of me.

Hi, I am also in diagnostic limbo. Do you have fevers regularly? Could you ask them to order an ANCA test? That looks at vasculitis.

Hi, thanks for the reply.
No don't really have a lot of fevers. I don't know much about Vasculitis either. But it's one of the reasons I posted on here. It's been a year since I went to docs with pins and needles in legs and waited so long for Neurology appointment and MRI that I am not very far along and only had typical blood tests, so I appreciate the input as it helps me feel more confident to deal with GP and where to go next.

It's rubbish waiting for a potential diagnosis when you feel physically unwell.

I also had an X-ray on my lungs recently due to breathing issues but I am waiting for the results. Maybe that will shed some light if an autoimmune condition has done something obvious to my lungs.

What you do need to bear in mind is that an awful lot of autoimmune diseases can take a long time to diagnose because it’s like fitting bits of a jigsaw together. Lots of the diseases overlap, you can still have some diseases with negative crp and antibodies. It’s really tricky and very frustrating for the patient and quite often they don’t like to label things until they’re sure. It’s all possibles and probables for many of us for a long time. Took them years to diagnose what’s wrong with me and my rheumatologist is still looking at loose ends of further possible diseases because my symptoms just quite don’t fit.
Chin up, it’s tough and you have to advocate for yourself but hopefully things will move a little quicker for you.

Yes there is so much overlap between things, and I have just read that lots of the blood tests aren't conclusive. I will mention to GP about Lupus in family though and maybe request the ANA blood test, but I'll try to keep it open and won't mention lots of conditions. I know I need to keep up strength and advocate for myself, but the last year has worn me out a bit. My DP has said to avoid the difficult GP, so I think that would help

I really appreciate the replies as I have been mentally struggling with the physical symptoms

Hi.
I’ve been unwell for 10 years and missed out on most of my 20’s. I’ve been for all the tests under the sun but nothing ever comes back.

One thing that helped was I started seein an anthroposophical doctor in London privately. I had tried all allopathic options so opted for something different.

He recommended Empower Plus Methylated vitamins, high grade fish oils along with a concoction of other prescriptions. My mind has never been sharper. He focuses on the whole being and brain health. I would say my fatigue is gone now however I battle with pseudo seizures due to the stress and trauma of being chronically ill. So just fixing my mind now. Good luck