Newly diagnosed - questions!


#1

Hi All - hello, quick precis, was dx in London Charing X hospital 18 July subject to DatScan, which I had 15th August, awaiting results, and an MRI next Friday. Follow up with neurologist on 31st Oct, in 7 weeks time and Im not on meds yet but symptoms have increased since the July appointment and Im counting the days until I can get on meds now - having read through various posts, this looks common? I think I presented as if I was coping ok but now often have weak heavy legs, more muscle tension, cramps, weaker right side limbs, increased slowness of movement sometimes, grinding of teeth as a result have cracked a molar I had expensive bridgework done on! ( and general angst as a result) have started. Im 59 and have a busy full-time job and aware the stress of this won’t help . Any alternative medicine recommendations which can help in meantime?? Ive read various anecdotal things re coconut oil, anything else - sister mentioned lions mane? No idea, some fungal based medicine. Cannabis oil without the high? Ive written to consultant to request earlier appointment, no reply. Im not imagining these new symptoms and concerned at speed to them happening to be honest, and in the limbo of waiting. Notice if I have red wine of an evening then sometimes I feel less shakey in the morning oddly - is this common? Doing a few PD Warrior exercises having paid privately via neuro-physio, was misdiagnosed by gp over last 18 months and sent off to NHS physio which wasn’t particularly helpful and at worse patronising and told down to sedentary job, and off you go with a stretchy rubber band. Ive looked at the alternative remedies section of this website but can’t see any concise list of anything you can take. Also sorry finally - what meds am I likely to be put on and what side effects to expect? I met a couple of women in PD Warrior class who were both immediately put on meds without results of scans! Ive got a really demanding work schedule in November and trying to plan but feeling quiet desperation setting in! Thanks all xx


#2

Hi @sarah007,

Welcome to the forum.

I’m sure you’ll get some really helpful advice from our members soon and it’s great that you’ve already joined the PD Warrior class. With regard to your medication, as you’ve not been officially diagnosed, you probably haven’t been given a Parkinson’s nurse. If this is the case, you may want to speak to one of our advisers via our helpline to get more support and information on this.

You can call them on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk.

I hope you find this information useful.

Best wishes,
Reah - Forum Community Manager