Polyarteritis Nodosa - Diagnosis changing direction!!!!!!!

[Tc3844]

My rheumatologist referred me for Nerve tests. I saw the Nerve Doctor at North Staffordshire Hospital (Dr Horton). Lovely chap and his intro was 'All I look at is nerves'. I had nerve tests on my legs, feet, hands and arms on both sides of my body. He then spent the other half of the time asking questions about my symptoms. He asked about bowel habits, wind, pains in my arms and legs, any itching experienced, suffering pains in the stomach, feeling nauseous (if so how long). I answered 'Yes, I have been experiencing that...' for most if not all of my replies. It became very clear at the end of the appointment that these were apparently questions to rule in or out MS. It became clearer that this was the avenue they were prioritising over Vasculitis. Watch this space!

[Suzym2u Moderator Vasculitis UK]

Interesting, we know some diagnosed with vasculitis who were misdiagnosed with MS first. Please keep us updated. Does Dr Horton see and manage other patients with vasculitis?

[Tc3844]

Sue,

The rheumatologist did not even explain what the nerve tests were for when I saw her in January. She did give me the undertone in the way she was addressing the diagnosis that it might not be vasculitis. As I did not know the purpose of these nerve tests, I did not ask Dr Horton about vasculitis. He made the comment that my nerve readings looked positive/good and he would compile his report for the rheumatologist before the weekend. He did say that my rheumatologist (Dr Vermaak) was overly thorough with her patients which was another good comment.

I have had a CT angiogram of my stomach and kidneys towards the end of January but Dr Vermaak wanted to complete all tests before looking at a diagnosis. Therefore, I have not had any feedback on this.

I am waiting for an appointment with the infectious disease unit at the hospital for further tests and an angiogram on my heart (due to constant high blood pressure).

Ironically, my father said that he had tingling in different parts of his body which had lasted a year, headaches and fatigue. They tested him for many disorders and did focus on MS and they ruled this out.

In relation to the new direction they (the consultants) are heading (MS), my head MRI and CT scans have shown no lesions or scarring at all. I have a back problem and my back has been MRI/CT scanned to death and no one has ever mentioned lesions or scarring linked to MS.

I have also had a Doppler scan on my carotid arteries which showed no plaque build up or other blockages. However, I am still suffering headaches every morning which wake me up at 3am, 4:30am or later in the morning. My blood pressure was elevated. At it's highest- 176/105. This seems to have come down as I am taking my blood pressure every day. Taking my blood pressure during the period I am having headaches does give a much higher reading.

The most annoying thing is the constant change in a diagnosis. In my view, get the relevant tests completed and then commit to a logical diagnosis. Sometimes I feel that the NHS consultants apply a 'painting by numbers' approach to diagnosing illness.

[PMRpro in reply to Tc3844]

"Sometimes I feel that the NHS consultants apply a 'painting by numbers' approach to diagnosing illness."

Unfortunately that is often the only way to plough through all the option in autoimmune disease! One source says that up to 10 years is a common time to make such a diagnosis. It took 5 years for me to get a dx of polymyalgia rheumatica - and I worked out what it was in the end, 2 rheumies got it totally wrong.