I have had severe ME, fibromyalgia and PoTS since 2006 and use a powerchair outside of the home and on occasion inside our home.
This past July I had lhs facial droop, couldn’t talk for 18 hours which then improved over days, severe dizziness and lhs weakness. Having stupidly decided it must be a new facet of ME we waited but after my Mum seeing me and telling me I’d had a stroke. I was taken by Ambulance to hospital but my husband and I had mistakenly mentioned that on occasion I cannot talk with ME but that is for seconds to minutes and feels quite different and is sensory overload but I think the ambulance paramedic decided it might be ME but did take all precautions.
i had a CAT scan and then was admitted and diagnosed with lhs droop, weakness, still incoherent. I was admitted to the Acute Stroke Unit and was treated brilliantly with a suspected stroke.
The MRI showed multiple cerebral and a single right cerebellar white matter flair hyperintensities. But the formal report was not available and as I could walk, my speech had improved a great deal and weakness and improved I was discharged with a follow up with a neurologist. I was out on blood pressure medication propranolol, 40 mg atorvastatin and aspirin all on top of my wonderful ME etc medication.
The subsequent neurologist appointment confirmed the multiple cerebral and cerebellar white matter flair changes but the cartoid vessels and aortic arch were fine.
The neurologist told me I had quite bad small vessel disease (SVD) which was bad for my age of 55, was at risk of strokes. Also that the MRI had revealed changes in keeping with small vessel cerebralvascular disease changes with vascular risk factors.
Of course now I have more questions and want to understand what this means. I do not drink or smoke and am 9 stone at 5,5” eating small amounts of highly nutritious foods as I’m conscious with the ME etc, that I want my body to be as healthy as possible.
Any exertion whether physical, mental or emotional makes the ME worse. i fought it for years before learning that pushing myself makes it worse. I don’t think the neurologist understood this and I know this is quite unique with ME. Some people ending up full time in bed having been pushed to exercise.
I would be grateful if anybody can share what information they can on the small vessel disease and what might be happening. I can cope with more negative news but just want to understand so I can accept and live as best as I can. Im going to ask my GP for more information as well as writing to the neurologist as I now have these questions ... I know we are all different and many things are generalities but all help would be so so so much appreciated.
Sally
This past July I had lhs facial droop, couldn’t talk for 18 hours which then improved over days, severe dizziness and lhs weakness. Having stupidly decided it must be a new facet of ME we waited but after my Mum seeing me and telling me I’d had a stroke. I was taken by Ambulance to hospital but my husband and I had mistakenly mentioned that on occasion I cannot talk with ME but that is for seconds to minutes and feels quite different and is sensory overload but I think the ambulance paramedic decided it might be ME but did take all precautions.
i had a CAT scan and then was admitted and diagnosed with lhs droop, weakness, still incoherent. I was admitted to the Acute Stroke Unit and was treated brilliantly with a suspected stroke.
The MRI showed multiple cerebral and a single right cerebellar white matter flair hyperintensities. But the formal report was not available and as I could walk, my speech had improved a great deal and weakness and improved I was discharged with a follow up with a neurologist. I was out on blood pressure medication propranolol, 40 mg atorvastatin and aspirin all on top of my wonderful ME etc medication.
The subsequent neurologist appointment confirmed the multiple cerebral and cerebellar white matter flair changes but the cartoid vessels and aortic arch were fine.
The neurologist told me I had quite bad small vessel disease (SVD) which was bad for my age of 55, was at risk of strokes. Also that the MRI had revealed changes in keeping with small vessel cerebralvascular disease changes with vascular risk factors.
Of course now I have more questions and want to understand what this means. I do not drink or smoke and am 9 stone at 5,5” eating small amounts of highly nutritious foods as I’m conscious with the ME etc, that I want my body to be as healthy as possible.
Any exertion whether physical, mental or emotional makes the ME worse. i fought it for years before learning that pushing myself makes it worse. I don’t think the neurologist understood this and I know this is quite unique with ME. Some people ending up full time in bed having been pushed to exercise.
I would be grateful if anybody can share what information they can on the small vessel disease and what might be happening. I can cope with more negative news but just want to understand so I can accept and live as best as I can. Im going to ask my GP for more information as well as writing to the neurologist as I now have these questions ... I know we are all different and many things are generalities but all help would be so so so much appreciated.
- Is my SVD mild, moderate or severe at present?
- What symptoms will indicate that my condition is getting worse?
- What % risk am I at risk of a stroke?
- Does the damage on the MRI look recent or longer term!
- Does small vessel disease put me at risk for any long-term problems such as strokes and dementia
- Are the white matter hyperintensities sign of silent TIAs?
- What is the average life expectancy of someone with SVD at my age?
- Is it possible to determine what the primary cause of my SVD is whether cholesterol, genetics, high blood pressure, the ME inflammation, hormonal?
- Can it be hereditary? I’ve learnt that my maternal grandmother died of a brain haemorrhage aged 62.
- Does the ME brain symptoms cause or increase the white matter hyper intensities?
- Is this a progressive disease?
Sally
