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


#3

You seem to be in a similar situation to my husband, who is 71, and still trying to work. His symptoms are mainly non-motor, and he really struggles with exhaustion and brain fog, which often makes work well nigh impossible. We’re told that exercise is key to slowing down progress, and we do try to walk most days, but I spend a lot of time researching alternative approaches to treatment because conventional medicine has very few answers to non-motor symptoms. I am currently looking into Indian medicine, and considering trying ashwaganda out of sheet desperation. I believe we have no alternative except to be proactive in our own care, trying to find whatever works for the very particular symptoms. There is a great deal of ongoing research because there is a substantial amount of money to be earned by the big pharma company that finds the answer. Meanwhile we all have to do our best to take care of ourselves.


#4

hI my name is sue. not quite sure if I should be here or not :expressionless: over last 18 months I’ve had many many symptoms all of which point now to parkinsons. I’ve had an mri brain scan for ms which was normal plus a diagnoses of fibromyafibromyala. I’ve been up and down to docs with symptoms I’ve had my thyroid checked my diabetes checked and sorted outhe my anemia. also been to a gyno everything from has been normal. so now I’m left with new symptoms getting worse shakey my left side is pain nerve pain muscle aches hand pain foot pain contracting muscle tension.
oh the list goes on . but all points to one place…here! can you still have a smaller arm swing or not? I’ve been going through he’ll last few months more so .
I’m clenching my mouth tremor some day but not all the time
leaking bladder
my writing isn’t the best anymore
and I have restless legs aswell


#5

Hi @Melissa74,

A warm welcome to the forum.

I’m sorry to hear that you’ve been struggling recently with your symptoms, I can imagine how distressing this must be especially if you haven’t officially been diagnosed .I’m sure our members will be happy to help you out, but in the meantime, we have a wealth of information on the’ Newly diagnosed’ section on our website which may be helpful to you here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

Parkinson’s affects everyone differently, however, there are different treatments, therapies and support that is available to you which you can explore via the link above. We also have an introductory guide to Parkinson’s if you’d prefer to have something in your hand to read. You can access the guide here - https://s3-eu-west-1.amazonaws.com/puk-live-1-d8-ie/2017-03/Parkinson’s%20and%20you.pdf

Additionally, if you find that your symptoms are becoming worse, I would advise you to speak to your GP about this as they’ll be able to prescribe the right medication for you. Please feel free to have a chat with one of our advisers via our helpline as well for more info and support. You can reach 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.

Many thanks,
Reah


#6

hi I’m being told I’ve got fibromyalgia and they seem to be sticking with that.