Balance problems - connected?

[Jane424]

I have had PMR for 21 months and am stable on 7 mg prednisone. I have increasing balance problems, usually when turning, even slightly, like avoiding a chair while crossing a room. Have any of you had similar problem? Many thanks, Jane PS am sable on 7 and not currently decreasing because my husband is ill and I am recovering from a broken sacrum, so waiting till life a bit less stressful before continuing down.

[PMRpro Ambassador]

You say increasing balance problems - has it always been a feature of your PMR? It was for me and I could trip over my own feet without even trying!

I have always put it down to poor muscle function due to the PMR effect on blood supply to muscles - and the longer it goes on the greater the likelihood that you lose fitness. There is also the factor that the lower you have reduced your pred dose the closer you are likely to be to the dose you are seeking: the lowest effective dose. So it is possible that the PMR inflammation may be starting to build up again.

Another remote possibility is that you are developing GCA - and GCA can have effects on the blood supplyto the ears and causing hearing and balance problems - so do keep a wary eye on it, just in case.

[Jane424 in reply to PMRpro]

Many thanks. No, not GCA as also have blurry eyes so was checked for GCA. I fractured my sacrum in Jan. Then my eye problems meant hours sitting in appointments, then my husband had accident, so I was coping single handed. Now my sacrum a mess. I don’t know whether the balance is due to that, my eyes, or PMR. Have always had poor balance and just been diagnosed with Inactive MS. A muddle. Bless you, Jane

[PMRpro Ambassador in reply to Jane424]

All that lot together could account for a lot.

You can have GCA without there being obvious signs - how did they check? The usual cranial GCA symptoms don't apply if it is extra-cranial GCA you have and that can affect the blood supply to the ears too.

[Jane424 in reply to PMRpro]

Please can you expand on GCA without obvious signs. My ophthalmologist dismissed it as I didn't have the obvious signs. What tests etc. would help? I have swollen optic nerves and blurred vision. Have had CT scans and MRIs of head and spine . Would they have picked it up? Also two spinal taps which were normal pressure. Also have myeloma, which is stable, and connected with clots.

Many thanks, Jane

[PMRpro Ambassador in reply to Jane424]

" I have swollen optic nerves and blurred vision. "

Those are cardinal signs of GCA. The only reliable test is really the ultrasound on the temporal artery - but like the TAB that assumes the GCA is affecting that particular bit of artery. This

pubmed.ncbi.nlm.nih.gov/301...

says that in about a third of patients with GCA the temporal artery is not affected so concentrating on the temporal artery is at best unreliable. In that case the diagnosis should be made on the basis of symptoms. Even then - too many doctors assume that everyone presents with headache or any of the other so-called typical signs or symptoms and they don't. Fewer than half present with headache and often doctors think it must be temporal - it isn't, GCA favours the occipital region, at the back of the head too.

I get the impression that CT and MRI (with contrast) are of use in LVV (large vessel vasculitis) but I don't know how accurate they are in cranial GCA where the arterieis involved are far smaller and the thickening of the artery wall is less obvious than in the aorta which is much larger.

Spinal taps have no role I know of in diagnosing GCA - why did they do them?

What symptoms besides the blurred vision and swollen optic nerves do you have?

[Jane424 in reply to PMRpro]

Thanks so much. I have balance problems, PMR stable on 7 mg, numbness down the right side of my body. The spinal tap was done to check the spinal fluid pressure which was normal. The CTs showed no clots n my bran, but I do have MS lesions in spine and brain. I do get pain in my neck, running up the left back side of my head over the top to my left eye intermittently. They are still pursuing a viscosity theory because of the myeloma, though my hematologist says my blood tests are fine.

[SheffieldJane]

I also experience mild balance problems and have done so since my diagnosis in 2016. I have adapted by delegating jobs that require standing on something for height. I have to hold on when I go downstairs. I bump into doorways and need to have a hand free to hold on. My grandma had disseminated Sclerosis and I sometimes wonder, some of the symptoms and the difficulty in diagnosis are alike. A research student doctor gave me all sorts of tests looking at this, the way I move etc right at the middle of my PMR diagnosis. I was never informed of her findings. She also spotted that my blood pressure differed in each arm that led to my Large Vessel Vasculitis diagnosis. So she was a smart cookie.I am sorry that you are having to contend with so much currently. I hope things improve for you soon.