Symptoms leading to Takayasu's Diagnosis?

[lindsayshealth]

Since November I have been dealing with lots of symptoms. I have been seen by many specialists, but not a vascular doctor, nor rheumatologist. Right now the diagnoses that make the most sense are: subclavian steal syndrome or Takayasu's.

Some of my symptoms are tingling/numbness in arms, legs, neck. Difficulty swallowing foods and jaw pain while chewing. Pain in various parts of my body. Difficult to get blood pressure on one arm, weight loss and fatigue. I have had extensive blood work which revealed nothing of significance.

Could you please tell me what your symptoms were before you were diagnosed?

[PMRpro]

You don't say how old you are - but that could also fit with giant cell arteritis, especially the jaw pain. If there is brachial artery involvement that can affect finding a BP. Up to about 1 patient in 6 does not exhibit any elevated blood acute phase reactants or they take a long time to increase. Seeing a rheumatologist would make sense - but even they struggle with atypical presentations of anything. GCA should be considered in patients over 50 but it does also happen in younger patients: the youngest in the literature was 17, last year a 37-year-old was found at autopsy to have undiagnosed GCA (he died of something else).

[lisaains]

hi I had twitching , passing out, chest pains ,neck pains very sleepy weight loss double vision and I kept going deaf in my left ear . have you had any ct ,mri scans ? I hope you get sorted really soon its the not knowing that is the worse x

[AndrewT]

Dear lindsayshealth,(hey great name)

I don't know quite what to say, to you, here....Except please do ask for a referral to a vascular/auto- immune

specialist, as soon a s you can. Whilst your age can have some bearing on your treatment, although how much seems to depend a bit on who you ask, what doesn't change is the need to get the right diagnosis/treatment in the first place. I haven't actually heard of Takayasu's myself, mind you there are dozens (perhaps thousands) of different 'strains/types', of these conditions. So, in this respect, my advice remains unchanged.

Please do let me, indeed us all, know how you are progressing- I can safely say we all send our prayers, and best wishes, to you.

AndrewT

[BronteM]

Hi, you say that your blood work showed nothing of significance? I think this often happens with Takayasu's - it certainly did with me and slowed down my diagnosis. It really is important that they listen to your symptoms, and don't just say that all is OK because your bloods look fairly normal. My symptoms were much the same as yours, and I was diagnosed by a vascular surgeon. The rheumatologist that I'd seen privately just told me that I had two frozen shoulders! I'm not sure that the type of specialist is always relevant...it's more important that they've heard of Vasculitis. Hope you have an answer soon.

[lindsayshealth]

BronteM,

If your blood work did not have an elevated ESR were you still treated with prednisone? I meet with a specialist July 1, and am hoping for some type of image testing that would reveal something.

[BronteM in reply to lindsayshealth]

Yes, I started on 60 mg a day in January 2012, and am now down to 5mg a day, as well as rituximab every six months. It turned out that I did have changes in my ESR, but they were quite subtle and very small changes could mean a big change my main symptoms. But it was the scans that showed up the state of my arteries and the damage that had been done to them. So you need to be sent for a scan on the 1st, if your consultant thinks it will be useful. Different consultants seem to rely on their preferred ones. Eg MRA, CT, ultrasound.

[lindsayshealth]

Ok, thanks for the info. How are you feeling after all this time and treatment?

[BronteM]

A lot better than I was three years ago!

[lindsayshealth in reply to BronteM]

That's reassuring. I will keep you posted on my results. Honestly don't know what else it could be if not TA. Not knowing is the hardest part!

[joglo]

Hi

I was diagnosed with Takayasus 2 months ago at Hammersmith Hosp. It seems I have had for over 12 years - I was originally diagnosed with RA and then fibromyalgia and as such the TA went untreated - my aorta is severely narrowed and I have difficulty with walking etc that had always been put down to the fibro.

[lindsayshealth]

Thanks for replying joglo. I hope now that you have a diagnosis you can begin treatment and healing.