I am new to this site/forum but have found it excellent.
My detailed story so far.....
January 2016 - I started to have bladder control problems. I had been exercising at the gym and I kept getting off the treadmill, needing to wee every 5 - 10 mins. A few weeks later, I wet myself as I was driving home on two occasions. The feeling of needing to go just came in seconds and by this time, I was already wetting myself.
March 2016 - I had a nasty fever which wiped me out and I was in bed for a few days, terrible night sweats, started to lose a little weight. These symptoms eased but came back a week later, even more extreme and I began to lose weight further. Ended up in hospital and my bloods were fine apart from my eosinophils were either nonexistent or very low. However, they were not concerned about this. My spleen was enlarged and they tried to culture any bacteria/virus in my blood but nothing was there. They were perplexed as to what was going on. An oncologist appeared at the end of my bed and I eventually had a bone marrow aspiration and a sample of bone taken. Results were all clear...no cancer or abnormal blood conditions.
April/early May 2016 - It took my 3 weeks to get my energy back and feel relatively normal. In this time, I had awful lower back pain which subsided after 2 weeks. On leaving hospital, they said that it could have been a virus which my body eventually fought off.
June - August 2016 - I then had intermittent extreme stomach pains which took me to hospital on three occasions. It was as if I was being stabbed. Yet again...full blood count was normal. I was CT scanned to death looking for kidney stones and a number of other things but all was clear. I was discharged on each occasion but there was no appetite to investigate the problem. It was at this point I knew there was something more deep routed going on. I also had a colonoscopy and endoscopy. All clear.
October 2016 - I was still having stomach problems and I decided to pay privately as the wait for an urgent appointment was 8 months!!!!! I made the appointment on Friday and saw the consultant gastrologist/Heptologist on Saturday. An amazing man - Dr Bohan (Royal Stoke Hospital). He said immediately that after reviewing my symptoms, that it was not a gastro related illness but a sistemic problem. Something is causing these plethora of symptoms in your body and we need to find it. He requested a number of tests - a number of antibody related test, 2 x Lyme disease, ANCA, Thyroid test and a 5-H11A urine test.
I ended up back in hospital at the end of October in Cheshire (Leighton Hospital) and they completed the tests requested by the Dr Bohan.
The results were that I had an under active Thyroid as my peroxidase antibodies were showing 420 and not between the normal range (0 - 9). The ANCA was negative and everything else was normal. I started Levothyroxine to replace the missing thyroxine.
Hooray....a diagnosis. I began to feel better....however...I still noticed that since September 2016, if I exercised I had a burning feeling in my legs and there was an area of my left leg which didn't feel right. I immediately had to stop. If I carried something heavy, I had a very strange cold sweat appear immediately and I just felt weak and very odd. If I did no exercise, I felt better. Odd..I thought!!!
November 2016 - I then developed a very painful left testicle which presented as a deep pain which would not go away. My linguine nodes either side of my groin were enlarged and painful. I went to the doctors after a few days. He examined both testicles, no lumps or bumps. At this stage, my spleen was still enlarged. I was prescribed Ciprofloxcin as the doctor thought I had an infection in the testicle and the nodes went down almost within 8 hours. Excellent...I thought!! However, my testicle was not as painful but just felt like it was detached from my body???? As if I had lost a degree of sensitivity.
December 2016 - (Bombshell!!!!)
I saw Dr Bohan and I explained my new symptoms I.e burning legs, cold sweat on exercising and testicle problem. He then stated that he believed I showed symptoms of Polyarteritis Nodosa. He asked me not to Google it and explained it was treatable but he needed to refer me to a Rheumatologist urgently. I also started to get deep rooted, localised pain on the right side of my head. Not like a normal headache and a pain in my left eye.
January 2017 - On 2nd January, the headaches got worse and I felt pressure behind both eyes, but mainly my left. Headache moved to my left side. At 10am, I lost sight in my left eye for 2 minutes and it came back. At 8:30pm, headache got worse and I had pins and needles down the left side of my face. Off to A & E. CT scan in head was showing no damage or bleed but they treated it as a TIA. I thought.. "Bloody hell...I am only 39 years old". I was then referred to TIA clinic. Stoke doctor said that he was happy I had not had a TIA and would treat me for migraines. However, as Polyarteritis Nodosa was being considered,an MRI scan would be required to examine the 'Circle of Willis' in particular and other parts of the brain.
I had an ultrasound on both testicles and all that was picked up was a groin hernia which my GP wanted to make a routine appointment to discuss.
Telephone call - Rheumatologist appointment made 23rd January:
I was at my wits end....if I have PAN, has it gone to my optical nerves and brain. I know that this is not a good area for the disease to present. I then had a call yesterday (20th January) from a dedicated, Rheumatological hospital in Stoke on Trent (Burslem). Dr Bohan had called the head of Rheumatology personally as well as sending my referral as a 'proper urgent appointment'. Instead of waiting 14 weeks (current waiting time for urgent appointments), I had waited 8 days for the appointment to be made.
I know it is a detailed post but can I ask the following from people:
1) Would other PAN suffers please contact me and let me know if my symptoms have presented in their lives? It would also be good to message fellow people going through the mill!!
2) Is an ultrasound definitive in ruling out PAN symptoms in the testicles?
3) If these symptoms have linked to other vascular disease, please message me.
In my experience so far, I have learned that getting a good diagnostic lead has been down to luckily finding a good doctor (Dr Bohan).
Good luck to everyone else who is suffering.