Possible Diagnosis.... Confused


#1

Good morning…

I saw my neuro on 16th March and was prescribed half sinemet, he said to see how i go on them and to come back in four months. The prescription didnt have a quantity so i was only given five tablets at the pharmacy and told to call my GP to get another prescription. After a few phone calls i got a phonecall from my neuro secretary who said its very important i stay on these tablets being newly diagnosed with Parkinsons. What?!?! My neuro hadnt said anything about that. Do you think she was just confused?? I’m too scared to phone back and get it confirmed at the moment.

My symptoms started almost two years ago… numbess and heavyness in my legs, left arm and left side face. I was admitted to hospital thinking id had a stroke. I hadnt, i was diagnosed with hemiplegic migraines but the symptoms never went away. I went back to my neurologist and was sent for head, neck and spinal MRI. This has come back clear.

I suffer with coldness, numbness and pins and needles mostly left side. Cramps in both legs and sometimes hands. My calves constantly feel tight and pulled. my face (left side) is always cold and tingly. I walk in to furniture and walls as i loose my balance. I feel like im vibrating from within (if that makes sense?) I have had a few episodes of leg shaking, arm shaking or full body shaking. terrible memory problems and i am ooohhh so tired.

Do any of you suffer with any of this?? I’m a complete newbie in this area and looking for some advice/information. I really don’t know where to start.

Sorry for the long post.

Bear xx


#2

Hi @ClaireZBear,

A warm welcome to the forum.

It sounds like you’ve had quite a few mixed messages from your neurologist which I’m sure couldn’t have been helpful. If you contact our helpline service, one of our advisers can arrange for a Parkinson’s nurse to contact you within 24 hours and he/she can offer further advice on this. Please give me a call on 0808 800 0303.

We also have a ‘newly diagnosed’ section on the Parkinson’s UK website which has a lot of information that’ll be really useful to you.

I hope you find the above information useful.

Many thanks,
Reah


#3

Hi Reah,

Many thanks for your reply and for the contact details. I will call them over the weekend, away from work as I do not want them knowing what is going on until I know for sure and can get my head around it all.

I have looked at the general symptoms and I have some that don’t seem to fit the diagnosis. So I am just really confused. I know to begin with they were looking for lesions on the MRI to see if it was MS. I wasnt expecting this diagnosis. I feel a bit side swiped.

Many thanks again,

Claire


#4

Claire,
I was diagnosed 8 months ago, and have had resting right-hand tremor for 14 months. Several of your symptoms are familiar:
leg cramps especially first thing in morning
tight feeling in the calf muscles
numbness in arm and leg
drooling.
tiredness, depression, nocturia, uregency, irregular bowels
These are regarded as accompanying PD. However I have resisted taking any drugs, and am drug naive. I have resolved all the above except the tremor (and the numbess still comes and goes), with vitamin D and other biochemicals as listed in the supplements chapter of the Wahls Protocol. I am now taking the high D3 dose Dr Wahls uses (10,000 IU pd) but most of the symptoms above cleared up within a few weeks after I raised the dose from 2000 to 6000IU perday…
D3 deficiiency is very common globally ( so is PD). For £28 CityAssys in Birmingham will measure your blood level though the post. THis video tells you what the USA D3 experts recommend as a good heathy level:

Peter


#5

Hi Peter,

I have had a course of D3 10,000mu daily and B12 injections to see if this helped. Unfortunately it didn’t and my blood tests were only in the lower side of normal.
I have only just started looking in to Parkinson’s symptoms… I lost my sense of smell many years ago and just thought it was down to have my nose quarterised as a child due to far too many nose bleeds. Maybe that wasn’t the case… I only realised in the last five years I couldn’t smell what other people could. Lol.
I have had few vision problems over the last year where my vision completely blurs to pure cloudiness. I have had my eyes checked and the optometrist says they are fine. I have had problems with IBS, depression and insomnia over the years.
I feel like vibrating from within… it makes the window sil opposite me at work wobble and makes me feel sea sick.
I feel so wiped out and tired, I’m struggling to keep up with work, being a mum and keeping my house straight.
Does this fit with Parkinson’s?? Am I just burying my head in the sand??

Claire. X


#6

Claire,
D3 needs to be taken daily at around 2000-4000 IU per day, to get serum level up to ca 100-200 nmol/L. See the video. The UK adequacy level 50nmol/L is too low.- were you below that? And it willl take three months for the serum level to reach a new stable level after increasing supplemnts. My experience and lots of science reading suggests D3 should be a key strategy.
I also tried high dose B12 - no effect on numbness ( so I’ve ruled out peripheral neuropathy)
Loss of sense of smell is linked with PD but can have other causes. Goggle 'anosmia’
IBS + low vitamin D3 - there’s links.http://bmjopengastro.bmj.com/content/2/1/e000052?utm_source=trendmd&utm_medium=cpc&utm_campaign=bmjopen&trendmd-shared=1&utm_content=Journalcontent&utm_term=TrendMDPhase4
Likweise depression cna be lifted with D3 it switchs on serotonin genes- no need for prozac.
Insomnia. I used to get very little deep sleep. I take 3mg melatonin at lights-out. Gives me 4 to5 hours slow-wave sleep. Very important for brain health. its a hormone.
Eyes - not experienced that, but it can be part of PD:https://www.webmd.com/eye-health/why-is-my-vision-blurry#3-9
I vibrate internally but its subtle, not seasicky.

The clinical community will struggle to keep up with the explosion in D3 science.- 5000 papers per year. I focus upon it for my own PD because I can follow the science and have the time to read, read, read. D3 switches of a raft of anti-oxidant genes, and switches off (at high doses) inflammation-causing cells. Oxidative stress and inflammation are both of central importance in PD.
Peter


#7

Hi @ClaireZBear,

You’re welcome.

I appreciate how confusing this must be for you. Do give our helpline a call - they’ll be able to offer more insight into your situation.

Best wishes,
Reah