New to the group / advice needed please x - LUPUS UK

LUPUS UK
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New to the group / advice needed please x

Mmw-15
Mmw-15

Hi my name is Michelle and I wondered if anyone could help or offer any advice

I had Hashimotos and a total thyrodectomy 2 years ago which was a great success and I’ve never felt better

Recently I have had 2 numb fingers so went and had some tests which resulted in ulnar neuropathy, however at the time because of my history my consultant ran some blood tests and these are the results ( at the time normal in January )

CRP 11.1 mg/L range <5

ESR 9 mm/hour range 0-12

ANA screen positive 160 titre/speckled

Double stranded DNA 72.0 range <10

He has arranged for an MRI for my elbow, to see a Rheumatologist and to see another Neurologist incase the elbow is inflammatory due to my results

As you can imagine I’m a bit worried now because I’ve been so well with no other symptoms, he has mentioned Lupus could be the cause of the results

Has anyone got any advice or can help with the results

Many thanks Michelle x

6 Replies
oldestnewest

Hello Michelle

Good to hear you've been doing so well up till now. . As you know, anti-dsDNA is used as a specific marker for lupus, but It's impossible for us to tell what the significance of your blood results is. Amongst other possibilities, anti-dsDNA can be present without any clinical activity. It's hard having to live with uncertainty like this, and so easy to fall into the trap of worrying isn't it? 'Sufficient unto the day is the evil thereof', as my old Nan used to say. Keep in touch here anyway; you're with friends :)

Mmw-15
Mmw-15
in reply to whisperit

Thank you so much for replying, yes it’s worrying me but I will wait and see what happens next, I think I’m just worried because I was soooo poorly for 2 years and don’t want to go back there :-(

Thank you again I’ll keep you posted, these groups are amazing and you certainly feel you are not alone xx

Hidden
Hidden

Hi there and welcome. Coincidentally I’ve been googling ulnar entrapment today because my arms are terrible and elbows are completely numb, fingertips burn and pinky and ring fingers have played up for years on both hands - particularly bad in the left one. My doctors blame small fibre neuropathy but myself I’m not so sure.

I think they would have seen tissue or synovial inflammation when your arms were MRId but I could be wrong. Maybe you need your cervical spine checked out next too?

I have had MRIs done of my neck and lumbar spine and have degenerative disc disease with protruding (herniated) discs - but not enough to cause compression leading to this severe weakness and numbness in both arms. I’m hoping that my rheumatologist will refer me to have my arms looked at by MRI too.

I have Sjögren’s Disease and Hashimoto’s and my inflammation levels are always higher than yours - but then a lot depends on what your own baseline normal is. Your high might be lower than my high as we each have our own normal range with rheumatic diseases. I also have positive ANA with different pattern to yours and I don’t have the specific antibodies for Sjögren’s, RA or Lupus so far, as you do.

My Hashis is fairly well controlled and I’ve been on various doses of Levo for so long now that the endo explained that my thyroid would be so shrunken that it would be non existent by now, so as good as removed.

I think that physiotherapy can do quite a lot for ulnar nerve entrapment if it’s caught in time. It’s also important not to bend/ fold your arms at the elbow while working, resting or sleeping so I try to stretch mine out on soft pillows now. Also try not to lean on your elbows while reading or working.

There are antirheumatuc medications that can help reduce the inflammation if you get diagnosed with Lupus or connective e tissue disease.

Mmw-15
Mmw-15
in reply to Hidden

Hi thank you for your reply, i have an MRI scan on Tuesday, I went to kings college hospital for my tests and if it wasn’t for my history they would of operated straight away because my ulnar is totally compressed and will not recover without surgery, but because of my blood tests results they need to rule out other autoimmune diseases, so hopefully I will have more answers after the MRI, I believe its 2 separate issues and they just happened to do my blood tests due to my history. Glad to hear your Hashimotos is under control, my was awful, tried everything, radioactive iodine treatment as well, have a total thyroidecty was a hard decision but the best decision I’ve ever made because it gave me my life back. Hope you get your arms sorted as well, it’ll be interesting to see what the MRI comes back with

X

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Michelle,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. To download or request a free pack, click here lupusuk.org.uk/request-info...

We are not medically trained here therefore, we cannot comment on your test results. Are you able to discuss them with your doctor?

To learn about the criteria and tests that are needed in order to make a diagnosis of lupus, read our blog article at lupusuk.org.uk/getting-diag...

Please let us know how you get on, wishing you all the best.

Thank you for replying, my consultant has made me an appointment so I can talk about my results, thank you for the links I will take a look

Many thanks Michelle x

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