[Sue@Youghal]

Hi Lulu
Unfortunately no specialist near me. in Cork. I am going to ask for a referral to a Consultant in Waterford.with really positive reviews on facebook. Still no Care plan or any treatment. Just waiting 8 weeks for an MRI scan as I have unbearable headaches that have affected my hearing. The Rheumatologist in Cork Ireland was horrible and arrogant and told me it was very hard to diagnose Scleroderma as “there are no tests”. I challenged that and he said well I won’t be doing any tests and I won’t be changing my diagnosis of osteoarthritis which I also have,(despite my blood results showing several autoimmune antibodies).

Trying to get a referral but I have not been able to see my GP as he is extra busy with Covid Vaccine jabs. I have found the following Facebook groups all really helpful and supportive .
1.keeping er lit’ IRELAND Scleroderma support group
2. Diffuse/Limited Systemic Sclerosis – Scleroderma
3. Scleroderma & Raynaud’s UK – SRUK Community Group
Good luck xxx Sue@ Youghal

[Sue@Youghal]

Jan 2020 – Referred to Musculoskeletal clinic. “Pain in left forearm on supination for 6 months – Tender in the area – Refer for x-ray and MSK clinic I waited for 9 months from referral in Jan 2020 to get the appointment 20th October 2020.

March 2020 Rash on foot – Itchy, red and hot.

Sept 2020 Referred to Dermatology with rash on face and left foot.

22nd Sept 2020 -I told my Doctor that I had fingers that kept going white with cold and had to wear gloves in the summer and he said that I had Raynaud’s and he ordered a full blood test .

Oct 20th 2020 -Rheumatology Appointment at outpatients During my consultation at the hospital I enquired if there were any concerns with my bloods results taken 22/9/20 as the Intern was taking a long time reading the results on screen. He said only my high cholesterol but nothing else. I had explained that 9 months after the initial referral I no longer had pain in my forearms but now I had puffy fingers and had all my rings cut off my fingers recently and severe muscle pain in my neck and shoulders. (This was not mentioned in the written feedback from the Intern to my GP).He then went to another room to refer to the consultant who after some time came into the room to confirm that I had osteoarthritis which he said was due to my age. No x-ray appointment. Prescribed Ibuprofen as required and referral to OT. I was not shown the results .

Oct 29th 2020 GP visit to surgery “Come in today”. Recent blood results (7/10/2020 reported to GP) were a “cause of concern”. My GP said that because of recent late onset Raynaud’s, puffy fingers and rashes, he believed that I had an autoimmune disease called Scleroderma. He wrote it down for me to look up as I had not heard of it. The bloods had been done for the Rheumatology appointment. My GP was curious as to the diagnosis only of osteoarthritis. At this time he suggested that a punch biopsy would be conclusive for Scleroderma.

9th Nov 2020 Punch Biopsy of left foot showed hyperkeratosis, focal parakeratosis and collections of neutrophils within the stratum corneum. Mild spongiosis of the underlying epidermis, mild perivascular chronic inflammatory infiltrate composed of small lymphocytes. Fungal stain highlights many fungal hyphae and spores in the stratum corneum.

26th Nov 2020 GP wrote to Dermatology Outpatients asking for an earlier appointment. The waiting list was 12 to 18 months from November. He reported psoriatic type rash only partially responsive to topical steroids requiring antibiotics on account of superimposed infections. History of Raynaud’s and finger joint pains,diagnosed osteoarthritis.

Dec 2020 I requested a copy of my blood results from Sept 2020. Results included:
Positive Anti-Nuclear Ab
Positive Anti-Centromere B Ab
At this time I had joint pain and swelling of my fingers. Days when I choked on food and drink, dry eyes, painful shoulders and neck. I had a permanent rash on my face and an open wound on my left foot from a rash that over the course of almost a year was treated with 4 different antibiotics and various prescribed anti-fungal creams and anti-fungal tablets.

31st Dec 2020 GP wrote to consultant Rheumatologist asking for a case review as anticentromere Ab and ANA positive , pronounced Reynaud’s symptoms, dry eyes, psoriatic type rash on left ankle and perioral rash. Please review for possible connective tissue disorder ?scleroderma. Patient is extremely concerned.

Dec 2020 Asked for a private referral to Dermatology as unable to walk properly with open weeping wounds on left foot.

Jan 2021 Placed on waiting list for Rheumatology.

27th Jan 2021- Tel consultation only from Occupational Therapy due to Covid. I informed the nurse that I had received a diagnosis of Scleroderma from GP and that I was doing daily Yoga and a Scleroderma exercise programme for my hands and face. I had changed in diet , and was taking daily Turmeric. Discharged from OT.

21 Feb 2021 Private Dermotologist diagnosis –
1. Erythemamato-telangiectatic rosacea affecting the cheeks
2.Probable tinea pedis affecting left heel and foot. Cured after 14 days of Lamisil cream and rash on face cured with Protopic 0.1% ointment.
3. Suggested further Rheumatology review and Opthamology assessment for dry eyes.

3rd Mar 2021- Private consultant Rheumatologist in Belfast
Results of Blood test
1. Anti-cenromere >8
2. dsDNA 74
3. anti-RNP A 4
4. Reynauds Symptoms
5 No evidence of sclerodactyl or skin tethering in upper limbs.
5. Nodal osteoarthritis in hands.(unrelated to the profile)

Current difficulty
24th March 2021 Called GP surgery to report build up of the following symptoms Noticed sound of humming in head and voice sounding like a vibrator to my ears. Loss of hearing. Huge feeling of pressure in my head . not able to bend down and pain when changing position. -Now in the 8th week . Initially prescribed Sinus flush and Sudofed treatment awaiting an MRI scan.Pain now extends to neck, shoulders and left arm.

31 Mar 2021 Dermatology appointment from Sept 2020. Report to GP of a tear in the the bicep muscle on Right arm (Popeye deformity) I had informed the consultant that no injury reported and no pain. Just the hard lump that had appeared recently.

Phew!!

[Author]

Posts