Hello, I’ve joined the forum in order to hopefully help tackle the situation with my mum and get some clarity, as the sheer volume of seemingly conflicting info from GP/other NHS contacts and apparent dragging of feet is really exasperating for us.
My mum was diagnosed with Parkinsonism (possibly MSA) in 2024 and in the last 6 months has exhibited significant deterioration in her independence and ability to do the most basic of tasks. The fast change is really shocking for us all, and causes us to veer towards the “rare” MSA.
The real killer is that she cannot yet start Parkinson’s meds (which would help clarify Parkinsons vs MSA and hopefully check the progression) because her blood pressure is way too low for it. So, we are first tackling increasing her blood pressure through every way possible - stockings, massive salt intake, eating little and often, Fludrocortisone. Nothing is having enough of an impact to keep dizziness, near fainting and pain at bay. In fact the Fludrocotisone caused bad swelling in legs which further disabled her to the point of practically being room-bound without support to move. We take her BP throughout the day and when she has dizzy spells the unit returns “E” as it’s too low to even register it.
Parkinson’s nurse suggested to swap to Midodrine to increase blood pressure without leg swelling, but GP stopped that flagging it was a risk given my mum’s urinary issues. So GP just upped the Fludrocortisone dose again, and we are now watching for return of swelling. If it returns, we need to stop that and try another blood pressure increasing med which I’ve researched exist - Droxidopa, Fluoxetine (SSRI), vascular constrictors such as clonidine or Prazosin.
The urgent aim is basically to get blood pressure high enough to start Parkinson’s meds in order to more confidently see if it’s Parkinson’s or MSA and hopefully stall the progression and regain some independence.
The other main aim right now is to stop the pain she is experiencing. She has significant pain which manifests as sort of muscle cramping in the shoulders and neck that forces her head down and necessitates sitting down to avoid fainting and to relieve pressure on neck. Once sitting down and eating 2 salt tablets her dizziness subsides and pain fizzles away. She then often feels surprisingly well and start making plans of what to do that day and then realises she can’t when she gets up again. We wonder if the low BP is a cause of the pain itself as oxygen is sparse in her body.
The other pain is in her legs and particularly knees, and she had an X-ray recently confirming mild osteoarthritis which was exacerbated with swelling caused by Fludrocortisone.
She had 2 MRIs both normal, 1 DaTscan which returned abnormal. I am aiming to get a second appraisal privately with a movement specialist no matter the cost.
GP recently prescribed Diazepam to see if this helps fix pain, but if not I want them to try stronger painkillers in the opioid category. 3 other drugs she’s tried as “painkillers” and which have not helped are Gabapentin (made swell up), Duloxetine (seemed to help a bit with urinary issues only), and most recently Amitriptyline. She’s now off all of these.
In sharing all this I am wondering if anyone else has themselves or with a loved one experienced a similar set of symptoms and outcomes/challenges, and would be hugely appreciative of any pointers or considerations. We do also wonder about misdiagnosis and wonder about non-neurodegenerative causes: autoimmune disorders such as PMR or Lupus, or even infections and post viral syndromes (she’s “not been the same” since Covid for example).
Thank you so much in advance.