What's happening?

Hello. I'm new here.

I'm am currently under the observation of a rheumatologist, immunologist and awaiting a referal to neurology.

But would appreciate any insight into a possible diagnosis. I feel like I'm going mad!

So, where to start...

Recently (12 weeks ago) I had a baby. Towards the end of my pregnancy I became very unwell. Symptoms included flushing of my face neck and chest which developed into a thick purple rash, headaches,flashing sparkly lights, tightness in my chest and throat and breathlessness, flushed shoulder with red tracking down my left arm, "lymph nodes" in my left armpit left side of chest and left breast, nocturnal diarrhoea and loose stools.

I had an ultra sound that ruled out pulmonary embolism, blood pressure fine ruled out preeclampsia, no sign of stroke or heart attack.

Post partum the rash and breathlessness cleared up. But 2 days after giving birth, my right foot big toe joint swelled up. Blood tests showed raised uric acid and I was diagnosed with gout.

Around the same time I started getting joint pain in my hands and wrists, worse first thing on waking, then would dissappear by midday.

Sent to immunologist who ran blood tests and I did a 24hr urine collection for carcinoid cells. This was negative. Lupus bloods negative but had raised ESR and raised IGA ( I don't have coeliacs) which she said combined with normal liver function can suggest mucosal inflammation or infection or can beassociated with certain rheumatoid conditions.

Since then, the joint pain is constant and agony. On most days it's about a 7. And is now in my wrists, hands, knees. I have raynauds in my right foot which has led to chilblains on my toes.

My left arm keeps swelling up, and at times is around 4cm larger than my right.

I had breast exam which was all fine and the consultant said I appear to have severe muscle pain.

I now have bad upper body muscle pain and weakness, numbness and tingling in my arms and hands. And leg muscles if I squat or kneel. At times the my upper body feels like it's tremor-ing if I stretch my arms out infront of me to pick something up. I also am experiencing reduced fine motor movement in my fingers.

I also have increasingly poor night vision and blurred vision if going from a dimly lit room to a bright room.

In addition tot his I have an underactive thyroid (I take 75mcg levothyroxine daily) with high TPO antibodies and suspected hashimotos. My levels have always been stable. I have sporadic boughts of severe coccyx pain which has been ongoing since 2010 with no known cause, and prepregnancy was temporarily "cured" with amatriptylin.

I have family history of SLE, RA, idiopathic fine motor neuropathy, and thyroid conditions.

Any suggestions as to what is going on would be greatly recieved. Any ideas where else I should post this?

Many thanks x

8 Replies

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  • Hello there

    As we are not medically trained I personally do not think it is our place to be trying to diagnose you, especially as you are already under three different Consultants.

    To be honest with you I think that you would just end up a whole lot more confused than you already are.

    I really do mean this in the nicest possible way. I very much hope that you manage to get your conditon under control soon.

    Wishing you wellness and peace

    Lu x

  • Hi Hugs84 - first of all, many congrats on the birth of your baby. But I'm so sorry you're so unwell which must have really taken the shine off it.

    I can't answer your question - as PainfulPixie says, we're not medically trained and it sounds like you have plenty of specialists trying to help you with tests and so on - but I did notice this part:

    "In addition tot his I have an underactive thyroid (I take 75mcg levothyroxine daily) with high TPO antibodies and suspected hashimotos. My levels have always been stable."

    75mcg levo is actually quite a low dose and I'm wondering if some of your symptoms might be due to uncontrolled hashis? There's another forum on here - Thyroid UK - with some very knowledgeable people on board. It might be worth looking around that forum and also posting on there if you haven't already done so?

  • Hi hugs84

    Firstly, congratulations on the birth of your baby. I am so genuinely sorry to read of your struggling and suffering and I sincerely hope that you can find some resolution and relief to these issues.

    As the others have said , we are not medically changed but I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • No wonder you are besides yourself with all that going on...poor you :( You will get lots of support in terms of how you are feeling from the site but for obvious reasons, it's very dangerous to give medical opinions. For some people, their medical condition co-exists with others and it can become very complicated and each person will have their own symptoms and treatment pathways. Search the topics to see if there is anything relevant there and maybe use the site for moral support whilst your medical team look after you. On a positive note, they clearly are taking this seriously and not dismissing you which is typically what has happened to many members on the site so may I wish you'' Good luck'' :) keep us updated.

  • Hi hugs 84 congratulations on the birth of your little baby. I have a complex medical history which many of your symptoms fit into you. And here's the danger, when you google various diseases they all have similar symptoms for example thyroid, lupus, fibromyalgia and 12 deficiency to name but a few produce very similar signs and symptoms. It can be very frustrating and stressful trying to get a correct diagnosis but hang in there as hopefully the three consultants will eventually come to the right diagnosis. I'm on the thyroid website as well and all of the sites you will find will give you helpful advice and support particularly on the emotional level. I really hope they come to a diagnosis soon as it is a very stressful process. Gentle hugs xxx

  • Thanks everyone for your replies.

    I wasn't intending anyone to diagnose me, so I'm sorry if it came across like that. It's just reassuring sometimes to hear that others have experienced multi symptom conditions and finally got answers.

    I saw a rheumatologist on thursday who, despite me having gout plus all the other symptoms and blood work as listed above, felt that I am not currently symptomatic of a rheumatic condition (?)

    He said that despite high uric acid and quite severe joint inflammation, gout is very rare in pre menapausal women, so the g.p shouldn't have "jumped to conclusions". He took some more bloods and I am due to see him again in 12 weeks.

    I spoke to my G.P regarding these comments,and she agreed that we perhaps need to be looking for other causes of high uric acid. She had mentioned when I was preganant that she thought I could have sarcoidosis. But as the main diagnostic testing is a chest xray,it wasn't practical to go down that path while I was pregnant. So I ahve that booked for next week.

    Like you mentioned, it's another condition with very vague symptoms that can easily masquerade as lupus or R.A, so we'll see.

    Im already on the thyroid board, and my levels have all been stable throughout pregnancy and postpartum, and im not feeling "thyroidy" if you know what i mean, but I have an appointment made for may.

    Getting there, slowly! 😊

  • Hi Hugs84, I really hope they get to the bottom of your symptoms. One thing i find can be very frustrating is that many Dr's rely predominately on your blood results for a diagnosis. My bloods always tend to be normal for some reason but over the years i've learnt to pursue matters with Med professionals and it's only by being persistent that further investigations have confirmed various diagnosis. What I'm trying to say is if you think something is wrong you must go back to your Dr. and get it sorted as you are your own best judge. Out of interest did your rheumy look at any tender points for Fibro xxx

  • Hi. Thanks for all your replies and concern before. Just wanted to update you.

    I have just had urticarial vasculitis- a rare disorder and there are several types, still not sure which I have,whether it's self limiting or as a result of another condition so a lot to learn about this condition but finally a diagnosis!

    X

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