UTCD now turning into Raynaud's or Scleroderma?

[Patricia2015]

Hi all,

I am a 39 years old woman and seeking for advice with my health issues.

I am sick for 3,5 years now and this has caused a significant reduction in my and my husband’s quality of life. Since approximately 2 years, I can only work or do other things for up to 4-5 hours a day and now facing getting fired and maybe getting unemployment disability insurance (unfortunately not having a “good diagnosis” for that) by the end of this year. Before I got sick I was a workaholic and I was sometimes called a bouncing ball in terms of energy

Last year I got diagnosed with undifferentiated connective tissue disease ("UCTD") by my rheumy and started Plaquenil (200mg/day). Last few weeks some of my health problems aggravated:

Fatigue. Regardless of how much I take rest, as if your body still has to recover from one or more marathons. Fatigue can come suddenly in one fell swoop over me, I'm in a blow violently sick. Then I must find my words, talk without articulation and have a sense of thick tongue. After 10 minutes of walk I have to grasp oxygen for 5 minutes.

Muscle weakness and stiffness and muscle cramps in feet.

Very light sensitive, in a few minutes of sun exposure even through a window I get a butterfly rash or half butterfly rash. These rashes go away in a couple of hours. Before this I loved sunbathing.

Since a week red inflamed(?) cuticles and very sensitive nailbeds. I can see some nail cuticle hemorrhages with the naked eye. Also some times daily my nails (fingers and toes) get cyanotic (purple or three colored). I also noticed a little bump on my big toe. See picture of fingernails.

Full Eustachius tubes and painful ears plus vertigo since almost 3 months

I suspect UTCD now turned into Lupus and or Vasculitis (possibly Wegeners) and I’m terrified for Scleroderma.

Thankfully I was able to make an appointment with a rheumy (not mine, she is on pregnancy leave) for next Thursday but I’m a very curious if these symptoms are recognized by some of you as indeed being Lupus, Vasculitis or ...?

Wishing strength to everyone,

Patricia

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For your information, other health issues and test results I have since I got sick 3 years ago:

unwanted loss of approximately 22 kilograms (now weighing 55 kilos with 1.75mt length) and can no longer gain weight. Dietician now subscribed me medical food (protein shakes) and weight loss now stopped.

migraine

malfunctioning pancreas (I take pancreatic enzymes for digestion)

inflammation in my ileum (small intestine) and canker sores in my mouth (first diagnose was IBS, then Crohn’s disease and now unknown but must take Entocort otherwise I get a flare)

subfertility, childless since 2008

Multiple fibroids in uterus causing extreme pain and daily bleeding for almost a year before having found a gynecologist who helped me with Esmya, currently no gynecological problems .

chronic sinusitis, nose bleeds, nose crusts

midcarpal instability (initial diagnosis was Sudeck’s disease)

lactose intolerant, and very sensitive for wheat and gluten; now eating glutenfree and diaryfree

slight wear in low back and neck (MRI showed brains and spinal cords made after suspected MS)

at various blood tests very high ANA (after very high titration) and positive ANCA, sometimes slightly elevated inflammation markers, vit B12 and D at minimum level of range even though taking vit B12 and D supplements, slightly elevated liver markers.

I had two urine tests (one sample, not over a day) and had once protein urine and high Dysmorphic erythrocytes

lower back pain and stiffness after about an hour of walking or standing (this is the only complaint I have since I was 15), stiffness and pain than forces me to lie or sit down .

Sometimes inflammatory pain in fingers and knees, but only for some hours or some days, then it disappears.

I have very often a slight increase in temperature (37.7-37.8 degrees Celsius, ear temp.)

My blood pressure is often quite high sometimes 170 or 140-150 over 90-100. I started measuring after my first vertigo attack.

Very often sore throat and often laryngitis.

I get infected/sick easily.

I cannot eat normal sized meals anymore because I feel sick right away and get abdominal pain.

Very bad skin, poor wound healing (the wounds of last laparoscopic surgery were closed almost after three weeks, my GP tried removed the sutures after two weeks...was not a good idea), I easily scratch and bruise, I have white pigmentation on lower legs and stretch marks on upper and lower legs. Skin biopsy of my upper arm yielded nothing.

[bellejewel]

hi sweetie, so sorry you are only 39 and got this mess, i am 68 and have sd with tumous calcification all over. such a painful decease. mind is called crest scleradoma. hopefully I'm praying by the time you get my age they will find a cure for this. as for me i pray to my god please don't let me live a long suffering life. but it will be up tp my lord. i am looking forward to go to heaven with my lord jesus. i lost my daughter 5 yrs ago with cancer, she was only 40. worst pain in this world. without knowing my lord i would go crazy. you sound like such a sweet young lady, so sorry you are going through this. i m here if you just need to talk. i have been through a lot, praying for us all god bless, belle

[Patricia2015 in reply to bellejewel]

Dear bellejewel,

I'm so sorry for your loss. I can not imagine how painful it must be to loose your child... I've lost my only sibling, my dear brother due to a traffic accident when he was 24 years and my mother and I changed after that. I know the goodbye is not a farewell, when my time has come i will be reunited with my dear family. In this way I can cope with it.

Thank you, I'm indeed in a true mess and not sure which connective tissue disease I have but am very afread of scleroderma or CREST. Last week I was seen by a student specialist and she sent me for a nailfold capillairoscopy, she didn't do any other test. The capillairscopy is planned over a month, as all my nailbeds are inflamed (also on some of my toes) and I see micro hemorrhages with the naked eye I'm worried that that takes too long if indeed I have scleroderma of CREST. I just cannot understand how reluctant some doctors can be, as if our lives are not that important :-(. After speaking to 8 different hospitals I managed to get an earlier appointment for over 10 days and 5 days after that I hear the test results from the student specialist. Now the waiting starts (again).

God bless you too.

[Irene55 in reply to Patricia2015]

If possible try and get referred to Professor Denton at the Royal Free Hospital in London. He is one of the best in the world, I was referred to him when I was diagnosed and he is very thorough. You can find out about Professor Denton from the Raynauds.org.uk site. Here is info about the Professor.

raynauds.org.uk/doc-spot

I hope you get some help soon.

[Patricia2015 in reply to Irene55]

Thank you Irene55!

I live in the Netherlands and am not sure my insurance will cover for a visit to the Royal Free Hospital in London. But I hope to find a solution though to visit him if necessary.

[Irene55 in reply to Patricia2015]

I didn't realise you weren't in the UK but if you are a British citizen you might find it is possible. I hope you manage to see him or someone else like him. If you contact the hospital they will give you advice I am sure.

I wish you all the best.