Frustrations in Diagnosing

Hi Everyone,
So glad to find this community and reading a number of posts has been quite helpful and informative. I see I'm not the only one frustrated and impatient for a definitive diagnosis and treatment plan.

Here's my story, I hope it's helpful to someone else. All members of my dads immediately family had/has Psoriasis. Both his parents of Portuguese and Italian decent and both of his sisters. His oldest sister was hospitalized numerous times due to the severity. During family gatherings there was always someone scratching something and usually reaching for an ointment. There were no Biologics or DMARDS to be had back then and steroids caused other complications and could only be used for short periods.

My aunt was the family expert on all things Psoriasis. One day she saw me scratching my leg longer than she thought I should for a normal itch. She demanded to examine my leg and you never told her no. She was undecided as to diagnosis, but proclaimed I would probably have it because of our family history. During my childhood and teen years I had various strange, itchy, undiagnosed rashes that eventually subsided. The doctors said it was possible that it was very mild Psoriasis but couldn't say for sure. Then I developed terrible dandruff even though I washed my hair regularly with quality shampoo. Then the most intense itching started, the kind that makes your want to claw your scalp off, where you scratch so much it bleeds. Still no diagnosis from the doctors and none of their medicated shampoos worked. I called my Aunt. She said to get a Coal Tar Shampoo, suggested several and said use it every day, regardless of what the label said. After several weeks things felt a bit better. But I had to use it every day for years just to keep it tolerable. Then it went away for a few years, then came back, went away, came back etc, etc. Still no diagnosis all the way into my 30's.

I was always active, but in my 30's I started to become stiff and sore all over for no reason, but no obvious joint swelling. And my once nice finger nails started splitting, breaking and pitting. I went to a Dermatologist, she said it could be Psoriasis, so I told her my family history and my various and strange issues. She made sure I didn't have some sort of fungal infection or anything like that. But basically said there was nothing she or anyone else could do. Not one single doctor ever mentioned a Rheumatologist. Not one!!

I went home and my nails got worse and worse, they tore, crumbled, bled, split, detached and became ridged. I wrapped them in dry bandages to protect them and when they were well enough, resorted to acrylic nails I applied at home. It probably wasn't the best solution but it actually helped keep them in one piece. I stayed away from Salons due to embarrassment and because they're usually unhygenic.

In my early 40's my left index finger started to swell and I developed a marble sized nodule at the base that was very painful. I couldn't close my fist all the way and lifting things became difficult. This went on for about 5 years and then the thumb and middle finger started. My entire hand would feel stiff and then I developed plantar facsitis in both feet. My heel was also beginning to hurt. By 51 yrs old I developed frozen shoulder in both shoulders and my ribs hurt where they attach to the spine. It was worst in the morning and I hobbled around like Quasimoto for an hour or more after getting up. Every doctor I complained to just wanted to prescribe an anti inflammatory, I was already at the maximum dose. By 56 yrs old hands and feet got so bad I had to ask for xrays, which showed significant arthritis in both hands and wrists. My doctor was alarmed and sent me for a nerve conduction test. It came back with profoundly severe in the left hand
(my dominant hand) and severe in the right hand. 3 weeks ago I had Carpel tunnel surgery and tendon releases on the index finger and thumb. I'm now in phys therapy but it's going to be about a year for full recovery, whatever that ends up being.

After the nerve test I asked for a referral to a Rheumatologist, which I received. Finally after 10 yrs!!

The Rheumatologist did Ultrasound of my hands and feet and did the full battery of blood tests. She tested for that one particular gene they look for and everything came back rather normal. Which was actually disappointing because the physical manifestations were obvious and visible. The doctor was worried about the serious state of my feet and the Achilles tendon on the right foot in particular, because it was very thickened and inflamed. She feared a rupture just from walking and said it was too inflamed to give an injection. She ordered an MRI to get a thorough look. She prescribed a low dose of Prednisone along with Sulfasalazine but I could only tolerate them for 1 week due to serious side effects. I was off for a week and then was prescribed Leflunomide, but it also caused elevated heart rate & high BP as major side effects and I had to stop it for that reason. I refused Methotrexate because it has the same issues and I have high BP as wells POTS. (Postural Orthostatic Tachycardia Syndrome)

When the MRI results arrived my Rheumatologist decided that I should see a Podiatrist and have him deal with the Achilles tendon issue. She also said that she didn't think the medications she put me on helped me and therefore I probably don't have Psa. However, I was only on them a total of 2 weeks and not even consecutive weeks. The drug literature says it usually takes 6-12 weeks to see if it's working. In my opinion she failed in her duty as a physician and I will find a different Rheumatologist.

I saw the Podiatrist yesterday, we discussed all my issues. Even though there was the possibility of an Achilles tendon rupture. We agreed on a shot because there aren't many options at this point and it could rupture regardless. It's been chronic for 3yrs, there's scar tissue and permanent structural changes. I go back in 3 weeks to see if it's helped. We also spoke about the possibility of surgery, but I'm putting that off for a bit. I plan to see a different Rheumatologist and maybe try Otezla or a Biologic before resorting to surgery.

I've read about people having remarkable results with them and if my Achilles and other joint and tendon issues are caused by Psa, surgery alone won't resolve the problems.

Thanks for this site, it's comforting to be able to share with others in the same boat. Best of luck to everyone and sorry for the length of this post.