Confused and looking for advice please


#1

Good morning,

Sorry, this may be a long post…
Whilst chasing a prescription from my neurologist, I was told by his secretary that being newly diagnosed with Parkinson’s that it is important that i stay on the new medication… WHAT??? My neuro hadn’t mentioned this when i saw him the previous week.

My story starts March 2017, I was admitted to hospital on March 1st with suspected stroke… I had lost feeling in my left side head to toe, had a CT scan which came back clear and I stayed in for a few days until I was diagnosed with Hempilegic Migraines. These symptoms never went so i returned to my GP, who sent me to a neurologist who suspected MS. I was given an MRI of head neck and spine. All clear. :smile:
I returned to my neurologist who changed my medication to half sinemet and duloxetine.
I am also on amitriptyline from my GP for help with pain in my body.
I have stopped gabapentin and pregablin as i dont feel they were helping.

My symptoms are:-
numbness down left side, tight calf muscles that occasionally lead to cramping, extreme tiredness, pins and needles in arms, hands, legs and feet, sharp pin pain, blurred vision, loss of balance and heavy legs.

Do any of you suffer from these?? I dont feel like i fit the Parkinson’s symptoms??

I feel so lost and confused and am waiting for another neuro apt. Not due for another 3 months. :frowning:

A lovely lady on here said i should phone the PD nurse but i feel like I would be stopping someone in more need getting through.

Thank you for reading, sorry for the long post.

Claire x


#2

Several of your signs might indciate diabetic peripheral neuropathy.

Leg muscle cramps reolved for me with vitamin D supplements 2000 IU per dayto bring serum level to 100nmol/L. D3 also lifted depression, daytime sleepiness, weak leg muscles (‘proximal muscle weakness’).

So…might not be a single cause…GP can check blood sugar and serum D3 easily.

Peter


#3

hi claire i have 99% of your symptoms i really think you should contact your pd nurse as they will be invaluable to you i know it,s a lot to take in but acceptence is your 1st major hurdle i was 9th in my family to get pd but it still hit hard
Petec


#4

Hi Claire …Please phone you’re PD nurse you need advice just like the rest of us .Remember you’re not taking anyone else’s place the advice will be tailored to you therefore by definition is yours and yours alone x Tommy


#5

Good morning,

Thank you for your replies. Maybe I need to un-bury my head from the sand. I will phone the PD nurse when I finish work. Eeek I’m a little nervous. :worried:

Claire x


#6

Hi Claire

Please do contact the PD nurse. I was diagnosed last summer and my neurologist forgot to make the referral so I didn’t get to see the nurse until 8 months later and felt that I was in limbo with no-one to advise me (although this forum is really useful). When I did see her she was absolutely great - we spent 90 minutes going over everything and I finally felt that I had some support.


#7

I just feel so confused… I received the copy letter to GP today and there is no mention of it in there either. Maybe his secretary got it wrong?? And maybe assumed because of the medication prescribed??
I feel stuck in Limbo now until I see him again.

Claire x


#8

Does this fit?


#9

The symptoms have lasted over a year and a half now. I just feel lost and it’s really getting me down.
I’ve had to buy an automatic car now as I was concerned that the cramps in my legs would stop me being able to safely drive my manual car.
I’ve had to take days off work due to different symptoms causing issues. My MD wants to know what’s happening and I don’t know what to tell him.
I had one GP tell me it was all in my head. I’m struggling with daily life and I feel really low. :cry:

Claire x


#10

If you dont sunbathe wihtout lotion, dont take mutlvitamins and dont eat lots of oily fish you will be D3 deficient, and badly so by USA criteria.
Spend £28 and measure your vitamin D level through the post;
http://www.cityassays.org.uk/vitamins.html
D3 deficiency is linked to CIS progressing to MS, and to PD. More to the point, sunlight or supplements can reverse CIS ,and MS, and perhaps PD.

Are your symptoms worst in late winter, Jan-March ?


#11

I had my Vit D and B12 levels already checked. They are fine. My GP prescribed D3 10,000mui daily and B12 injections to see if I improved over 6 weeks. I didn’t. And with my level being in normal range he didn’t want me continuously taking them.


#12

GP was heading in the right direction. But UK guidelines for D3 are abysmal. But GP has to follow them.
USA guidelines allow 10,000 IU indefinitely. Read the Wahls Protocol - Dr Wahls MD Univ Idaho uses 10,000 pd to get a serum level of 200-220 nmol/L. without calcium overload.She has reversed her MS.
It would take 3months to get there, and longer again to start reversing the neuro-inflammation.
I caN supply many links for your GP. But high dosing will be on your head - he won’t be insured by NHS/MDU. I intend taking 10,000 IU pd idefinitely.


#13

Hi Please contact your neurologist or a Parkinson’s Nurse the use of a DAT scan can show the areas of the brain affected by Parkinson’s it measures the amount of dopamine and where it is produced.
Medication is important, but also keeping your core strength, regular stretches reduces muscle cramps and increase circulation.
We are all affected differently but it is how your body reacts to medication that is key. Keep a daily record of how much, when, what you were eating and effect of medication. When you see either your doctor or specialist present your daily diary this will show any patterns.
There is lots more of information out there a support group let’s you see you are not alone and conversation always helps.
Stay strong

Mark