[MAT52]

Mine has been around forever in different guises. I believe the trigger for me was when my mum inadvertantly starved me as a baby by not breastfeeding me on demand. I almost died - about 24 hours off I was told. I think this sent my body into fight or flight.

So thoughout my life I've suffered from eczema, alopecia - first 45 years - then this went and was replaced by RA and latterly small fiber neuropathy - probably as part of the package. I have Hashimito's Hypothyroidism - diagnosed about 14 years ago now but could have been around for much longer I'm guessing.

My symptoms seem to completely change on a regular basis so that the diagnosis of seronegative RA has come to include my present symptoms - nose bleeds and sores for a few years have gone over the past few weeks but I have jaw ache, pneumonia, loss of taste and complete absence of smell. The painful neuropathy lasted about two years alongside the synovial joint pain and then on it's own. I haven't tolerated any drugs apart from Levothyroxine, Codeine, Naproxen and Zopiclone to date. I am to start Imuran once I'm well enough - having tried and failed to tolerate Sulfasalazine (3 weeks), Methotrexate (2 years) and Hydroxichloraquine (18 months) so far. Also Amitriptyline, Gaberpentin and Duloxetine have all been and gone.

I just wondered if anyone else has a radically shapeshifting type of autoimmunity? I can get used to one set of symptoms and just about manage them but then I get another lot arrive and am completely floored. I just don't know whether I'm coming or going and nor does my rheumatologist - who is an old fashioned arthritis type of guy - very cautious by nature. My GPs (I'm in Scotland) seem to put each symptom down to something very normal such as gastritis, or just nose bleeds, just stress headaches, just a virus (pneumonia), just idiopathic small fiber neuropathy, just Raynaud's and just Sicca, just TMJ, just Morton's Neuromas etc.

No one seems to be joining up the dots. I have a neurologist, a rheumatologist and am soon to see a general surgeon about my longstanding GI problems. The rheumatologist thinks everything is probably under the loose umbrella of RA/ Rheumatoid Disease. The rheumy sticks with RA because when I first presented my knuckles and finger joints were swollen in classic fashion. Now this is no longer the case - I seem to have much more trouble with osteoarthritis in my finger joints than with RA. Nerve pain (stocking glove distribution) is a much bigger issue still for me than joint pain. I have had lumbar puncture, nerve conduction, MRI of brain and neck and nothing apart from arthritis has shown up. I am autoantibody equivocal with negative ANA.

Personally I think I have a type of Vasculitis (Wegener's) but because I have no skin manifestations they have never investigated this possiblity. Perhaps it doesn't matter if I'm going to try Imuran soon?

I would be interested to know if others have a shapeshifting autoimmunity of this nature. I'm not good with change and find it very hard to settle or come to terms with a disease which keeps chopping and changing so totally all the time.

[bluesfan]

Mat52
Sorry it's way early in the morning here and I'm not quite awake yet to remember details of your other postings - mainly whether you've been looking at the Vitamin B12 deficiency thread - also off the top of my head - have you had your adrenal function checked?

[MAT52]

Originally Posted by bluesfan

Mat52
Sorry it's way early in the morning here and I'm not quite awake yet to remember details of your other postings - mainly whether you've been looking at the Vitamin B12 deficiency thread - also off the top of my head - have you had your adrenal function checked?

I know this is drawback of this site for UK users but then it's the other way round for UK forums with US members so I just see any speedy comments or answers are a bonus!

To answer your questions - my B12 was last taken over a year ago and was 370 or so. I've read Mrs D's sticky thread and take a sublingual tablet daily. I don't think anyone has ever checked my adrenal function? This isn't done routinely here in UK I don't think but I did meet someone with Addison's at a long term conditions workshop so it must happen. Thanks, Mat

[bluesfan]

Mat52
I'm guessing with your Hashimoto's you're under an Endocrinologist - I'm not sure if it's like Addison's (that's my AI by the way) that it makes you prone to secondary AI conditions - maybe when your next endo. appt. is due that might be something to follow up. I'll try and do some reading up on it later but sorry my brain is struggling to switch on today.

[MAT52]

Originally Posted by bluesfan

Mat52
I'm guessing with your Hashimoto's you're under an Endocrinologist - I'm not sure if it's like Addison's (that's my AI by the way) that it makes you prone to secondary AI conditions - maybe when your next endo. appt. is due that might be something to follow up. I'll try and do some reading up on it later but sorry my brain is struggling to switch on today.

Not under an endo - just my GP for Hashimoto's in the UK. Only people with Graves get to see an endo on the NHS. Addison's must be hard to live with. In a lot of pain again today so I understand the concentration issues/ brain fog. Coughing for 3 solid weeks has totally wiped the floor with me.

[bluesfan]

Hi again Mat52
I don't for a minute think you may have Addison's but there's a chance your adrenals have been depleted by some of the long term medications you've been on (as well as chronic illness). I'm no expert but I think Methotrexate for one can do that. Also have you been using Zopiclone long term - It doesn't affect the adrenals (just reread the data sheet a couple of days ago as I've used it sporadically) but it is not recommended for use more than 4 wks and can have side effects.
Here's a link to the NZ Medsafe website if you want to check it out:
http://www.medsafe.govt.nz/profs/dat...piclonetab.pdf
Your GP could order a serum cortisol test to see if you're low. Usually done at 8am with fasting. Sodium & Potassium balance is also another indicator of adrenal insufficiency but usually an imbalance won't show on regular testing until someone is into crisis. Hope this is useful.

[MAT52]

Originally Posted by bluesfan

Hi again Mat52
I don't for a minute think you may have Addison's but there's a chance your adrenals have been depleted by some of the long term medications you've been on (as well as chronic illness). I'm no expert but I think Methotrexate for one can do that. Also have you been using Zopiclone long term - It doesn't affect the adrenals (just reread the data sheet a couple of days ago as I've used it sporadically) but it is not recommended for use more than 4 wks and can have side effects.
Here's a link to the NZ Medsafe website if you want to check it out:
http://www.medsafe.govt.nz/profs/dat...piclonetab.pdf
Your GP could order a serum cortisol test to see if you're low. Usually done at 8am with fasting. Sodium & Potassium balance is also another indicator of adrenal insufficiency but usually an imbalance won't show on regular testing until someone is into crisis. Hope this is useful.

Thanks Bluesfan. I think the sodium and potassium show up in full blood count as electrolytes? Anyway my FBC is usually fine - last taken about a month ago only things that flagged up were my ESR 38 (quite low/ normal for me), PVC and Total Protein were all raised - which I believe shows I have inflammation. Last time my thyroid was done about five months ago my TSH was suppressed and my FT4 was as usual at the lower end of normal range. So nothing is shouting out to persuade my GPs to run further tests.

They say I won't be allowed to try Imuran until I'm fully recovered from my lung infection. I just wondered how I will know if I'm recovered when the aches and stiffness are starting to increase but I still feel completely wiped out. I will ask on Wednesday about getting my cortisol levels checked but again, I don't think this is a test they routinely run. Thanks for your help.

[MAT52]

Originally Posted by MAT52

Thanks Bluesfan. I think the sodium and potassium show up in full blood count as electrolytes? Anyway my FBC is usually fine - last taken about a month ago only things that flagged up were my ESR 38 (quite low/ normal for me), PVC and Total Protein were all raised - which I believe shows I have inflammation. Last time my thyroid was done about five months ago my TSH was suppressed and my FT4 was as usual at the lower end of normal range. So nothing is shouting out to persuade my GPs to run further tests.

They say I won't be allowed to try Imuran until I'm fully recovered from my lung infection. I just wondered how I will know if I'm recovered when the aches and stiffness are starting to increase but I still feel completely wiped out. I will ask on Wednesday about getting my cortisol levels checked but again, I don't think this is a test they routinely run. Thanks for your help.

Ps Zopiclone is a strong sleeping tablet and I try to only take one or two a week to ensure a good night's sleep. I wouldn't take it more than once a week apart from this last week where the cough has been so bad.