New diagnosis

[Carolyn1974]

Hi I'm part way through getting a diagnosis and was wondering on other people's experiences of how long it took to get a firm diagnosis. I went with a painful shoulder and am having a scan on Monday. My doc said muscle infection. I have other symptoms that I thought weren't connected like hip pain and legs etc anyhelp appreciated ty

[periwinkle62]

Hi

I have replied in detail to a similar question but briefly it took a few months because I had also been ill with a possible virus, then they found a large gallstone wedged in my gallbladder and it wasn't clear what symptom was down to what. Also the GP tried saying that callouses on my knuckles were down to central heating (which I don't have), skin symptoms were put down to a drug (treating ongoing stomach problems) reaction and extreme tiredness was put down to dehydration after getting sick! But I got so that I could barely stand and ended up in hospital - they thought the gallbladder was infected. Was kept in due to low oxygen sats and a CT scan confirmed lung disease - leading to specialist blood tests which came up with antibodies for the condition. Looking back, I think I have had this for a long time but symptoms were vague and can often be put down to something else.

[Rabbitygal]

In HINDSIGHT (which is a wonderful thing!!) I had been ill for a few years and when I had my biopsy the surgeon said that the muscles showed that I had been suffering for years NOT months as suspected!

But 14/2/18 my eyes started swelling, 2 visits to different pharmacies, rang 111, Triage, saw Doc 19/2/18 who said it was a Nut Allergy!!!

6th March had blood test having seen a different Doctor, LOTS of pain over next few days. More blood tests 12/3/18.

14/3/18 First Appt with Rheumatologist (suggested Dermatomyositis).

Over next couple of weeks I has SO MANY tests! Nerve Conduction, Ultrasounds, Scans, MRI, CT, More Bloods etc etc ...

3/4/18 Admitted to Hospital. From that point ALL HELL LET LOOSE!! I had more tests and things than I ever imagined possible. By this time they were telling me it was definitely Dermatomyositis BUT I still had to wait for Muscle Biopsy. I had that on 20th April, Confirmed a week later.

Please PUSH for more tests if you feel you are not being taken seriously. It is your body and you know if there is something wrong! Luckily I had a FABULOUS Rheumatologist who wouldn't let it rest until she had got to the bottom of things.

[Annmack]

About 9 months from the rash appeared but in hindsight been having symptoms for years

[Elle321]

My diagnosis was quick but ONLY after i found the right consultant. Previous to my referral to her I was bounced around the system with constant '6 months and well test again' syndrome. Good luck

[Lucy_4]

I was suffering for years with muscle pain but because I was doing Crossfit at the time was always told I worked out to much until the rash appeared and it took 10 months to be diagnosed.