hi, I’m a little frightened and I’m hoping that someone perhaps can help by seeing if any of the symptoms I have developed recently sound familiar. I apologize in advance for this long post.
5 yrs ago diag w Raynaud's➙5 mo ago sudden onset of severe never experienced Raynaud's symptoms after 8 hrs in 65℉(18.6 ℃) rm➙ ink-like blue patches appeared hands/arms ➙ Outbreak of sores in mouth➙ hive-like rash on face. Symptoms gone when visit with GP 2 days later ➙he says psychological➙ find new GP➙ referred to Neurologist➙ Suspects MG➙ lab test negative➙ Referred to rheumatologist next week. new symptoms since outbreak in Aug: severe nightly muscle/tendon pain in forearm and calves at elbows/knees fingers/base of thumb, wrist ➙ sensations in toes/feet/calves & fingers/hands/forearms like low volt, electrical charge, tingling constant, not painful but more numb ➙ sensation in skin to atmospheric temperature/water temperature while still experiencing Ranauds finger symptoms in cold temperatures ➙ Increasing pain in skin of face/forearms/calves➙ awaken in night roughly rubbing painful lips/ face/ forearms➙ frequent thirst, without increased urination. No increased weakness, no difficulty/pain moving joints. : Medical history: Graves’ disease 45 years, chronic migraines 35 years, double vision 30 years, raynaud's five years.
If anyone has any ideas of what the symptoms might represent, I would appreciate hearing from you. I cannot seem to find any connection when I try to research. Thank you so much.
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sorry but none of those resonate with me, keep pestering doctors for some answers, it all sounds ,horrible, I do hope you get a diagnosis and some relief soon 🤞🏻
Might having a full blood panel give an indication? It is expensive (GP won’t do it…can’t justify cost) but you will get a report from a doctor and can then show it to your GP if anomalies are present. Medichecks or Blue Horizon offer such tests. Have a look at Thyroid UK (particularly as you have Graves) and BHF too…both helpful re symptom checks and helplines. I do hope you soon have a diagnosis and start to regain better health.
hi I have the sores in mouth and body my dentist referred me to dental hospital who are helping me with lichen planus and a mouth infection, it’s very painful.
The only thing I have similar is sometimes a mild tingle from head to toe only random when I feel like my brain misses a signal to my body down my spine and lose my vision for a nano second.
I can feel for you as when you go to docs with a large list there isn’t time to get through it all maybe try and get a double appointment to work through it
Sorry to hear that you are suffering so much. I am not a medical professional but I wonder if your electric charge/tingling sensation is related to nerve pinching at somewhere else. I once had sharp pain radiating from a shoulder/shoulder blade through the forearm to the fingers. My doctor thought that the origin of my problem was my neck and what I experienced was the referring pain. I did physical therapy for a month and pain was resolved.
Hi, Reading your list was like looking at my own! Try a hospital that has a really good Rheumatology dept. I travel to Stoke-on-Trent, a journey, but so far worth it as they are interested in finding a cause of these strange symptoms I have. Raynauds meds had bad side effects for me, but I do take herbal water tablets for the water retention I get which makes things easier on joint pain. Don't give up looking for answers as it could be our weird symptoms are our bodies immune system reactions too. Even my dentist not interested in sore mouth lumps, blisters etc!I'd be interested to know how you get on, and if they find out what's causing my issues I'll let you know.
Sounds pretty horrible and I’m glad you are due to see a rheumatologist soon. Would you be able to take photographs of any of your symptoms that are visible although as a lot of them are ‘internal’ that might be difficult. It’s very difficult when there is nothing visible, I know that from experience.
I was diagnosed with Graves in 2012 but before that I used to get a horrible thing where I would get an electric shock type of feeling from the back of my neck through my skull. It would happen really suddenly, just whoosh right up my neck, very unexpectedly and was quite horrible.
I never really got anywhere with it and on the one occasion I saw a GP she leaned back in her chair, looked at me like something nasty she had found on a slide or as if I was really weird and she had never heard of such a thing as I was describing - I have since discovered there is a condition called occipital neuralgia which has a similar feeling - clearly she had never heard of it. Anyway, she finished the consultation by saying ‘I think you’re needing your holiday’! She didn’t add ‘dear’ but it was implied.
To say I was absolutely livid would be an understatement! I came out of the surgery almost in tears with anger and frustration. I drive to the south of France sucking Dr Batch’s rescue remedy gummies I felt so uptight. Three months later after nearly killing myself in the car one night I saw a different GP and was diagnosed with Graves’ disease. No wonder I felt awful.
I developed inflammatory arthritis in 2015 and now I have osteoporosis - so keep an eye on your bones if you have had Graves - no one warned me about that!
I worked with someone a few years ago who had raynaud’s and scleroderma her fingers used to go a horrible waxy white colour. She could be affected just by the change of temperature just by going from one room in our place of work to another.
Unfortunately it seems to be a condition that can affect a great many other parts of your body which could be what you are finding. This lady was given medical retirement when she was quite young.
It might be worth writing a list of dates and times, the sort of things you have tried and what helps or doesn’t, when you have your various symptoms, what makes things worse etc so that you are well prepared in your head when you meet your rheumatologist so that you know exactly what you want to say during your consultation.
Are you in remission from Graves or have you had your thyroid removed or had radioactive iodine treatment? Was your double vision caused by thyroid eye disease? I don’t know if you have visited the Thyroid U.K. site in Healthunlocked - it might be worth posting on there too.
I hope you get a decent rheumatologist and can get somewhere with it all.
What is MG? “referred to Neurologist➙ Suspects MG➙ lab test negative➙ ”
Hi, Sorry to hear you are having these problems without much sympathy from the medical teams..It may be a worsening of your raynauds as you say but could you be experiencing cramps in your limbs l have quinine bisulphate tabs at night for those and the GP who prescribed it was spot on very rarely experience it now l take one at night .aybe worth asking about it also good if you do get to see an RA consultant my late gp did not want to refer me so went privately and was right diagnosed 20 yrs ago and stabilised on RA drugs ever since with some changes when necessary. Take care l hope you soon get sorted
I don't know if this will help at all, but some of these overlap symptoms to your Grave's Disease could possibly lead down the path to a vasculitis type syndrome - Raynaud's, evidence of areas of poor perfusion, vasospasm, and neurological symptoms perhaps caused by inflamed blood vessels with resultant impaired oxygen delivery to the tissues.I may be way off base here, but just throwing this hat in the ring for your consultants to ponder. Best of luck sorting this, it sounds very complex, and intertwined, whatever is going on.
When you next see your doctor, try concentrating on a couple of symptoms that give you the most worry. Going to see a doctor with the list you have sent here is a bit overwhelming.
Emphasising just a few will probably lead on to questions asking if you also suffer XYZ…..& could lead on to a diagnosis……that will bring some treatment & hopefully lessen your anxiety.
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