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odd symptoms?
Since his flare in April this year my husband has had increasing difficulty in walking and is now unable to move from bed to chair without 2 helpers, although he has good muscle tone and power in his legs. He is also extremely weary most of the time with occasional confusion and incontinence.
All his WG markers are back to normal and chest X-Ray has cleared. Neurologists can find nothing wrong and the general view is that this may be due to WG damage in brain vessels and we will have to wait and see.
Current treatment is now down to 25mg Pred daily- had 2 Rituximab infusions in early May and there is talk of adding in Myco next week.
Anyone else had any experience of these sort of effects?
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Re: odd symptoms?
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Re: odd symptoms?
Bloods all normal apart from a persistently lowish sodium which has been present since his initial diagnosis in 2006.
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Re: odd symptoms?
@Mags
Perhaps your husband is also suffering from hyponatremia?
https://www.webmd.com/a-to-z-guides/what-is-hyponatremia
As our departed friend Jack once said, “Just because you have wegs doesn’t mean you can’t have something else.”
Last edited by Pete; 07-01-2019 at 01:03 AM.
Reason: Tried to make a hyperlink
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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Re: odd symptoms?
What do the neurologists recommend? Any further testing? Wegs does increase our risk of many other medical problems.
Knowledge is power! Wisdom is using it to make good decisions!
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Re: odd symptoms?
Definitely has mild degree of hyponatraemia with no apparent cause. No further testing recommended (head CT in May suggested a few areas of old Vasculitis with some old areas of infarction suggesting possible vascular dementia). Both Neurologist and Psychiatrist are reluctant to confirm a diagnosis of dementia as they feel that the symptoms could be due to the recent severe flare plus the high dose steroids. Consensus is add in the Myco and wait and see if there is an improvement whilst gradually reducing the steroids.
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Re: odd symptoms?
Can you do a simple test?...
Ask him to move his eyes up and down without moving his head.
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