Neurologist says probably Parkinsons, no ... - Cure Parkinson's

Cure Parkinson's

22,288 members23,875 posts

Neurologist says probably Parkinsons, no medication as yet, what to do now!!

gemsmum profile image
29 Replies

My Gp referred me to a Neurologist as I had a tremor in my chin. I am 71 live in England and there was a long waiting list so I paid privately. After doing all sorts of tests, walking, touching his finger and then nose, hand grips etc he said he couldn’t diagnose me but it was probably PD. He also asked if I wanted a Datscan but still no drugs even if positive. I opted for the scan but am now thinking do I really want one as it will make a difference to my travel insurance and maybe my driving licence. Do most people have a Datscan to diagnose PD? I have noticed during the night I have really bad leg cramps which I didn’t tell him about as it didn’t seem relevant but on reading the symptoms that is one of them. Could anyone help with tips for cramps? Has anyone been diagnosed with only one symptom?

My other problem is my daughter wants my husband and myself to move to where she lives. We live in a bungalow now but as she lives in a much more expensive area we couldn’t afford a bungalow but would have to have a house. Would there be problems living in a two story house with PD, it’s such a big decision and causing me much stress as we have lived here for 30 years but have no family here.

Sorry for rambling on but I am getting myself stressed to what the future holds with PD. Also the drugs seem to have a lot of side effects but maybe I am getting ahead of myself. Thanks in advance for any help.

29 Replies
MBAnderson profile image
MBAnderson

Please take a look at my profile. There may be some helpful information for you there.

Everybody is stressed out when newly diagnosed, but after you learn more about it, you will find it is not as bad as you initially imagined. It's not a death sentence, it's a wakeup call.

If, when I were newly diagnosed, I knew what I know now, I would be symptom-free and leading a normal life. If you take the steps now that you should take if your diagnosis is positive, you will serve yourself very well. If you don't have PD and you take those steps, you will be serving yourself very well anyway.

Symptoms worsen very slowly the 1st 5 years.

There's a popular doctor in US that practices natural-pathic medicine (Laura Mischley) who claims 1/2 hour of exercise per day will cut the rate of progression in half. I believe that's true.

I don't know if a PD diagnosis in your country will change your insurance premium, but I doubt it'll have any effect on your driving license. Most likely a DaTscan will confirm a diagnosis.

Leg cramps are common in PD. There are several things you can do to alleviate that such as magnesium.

Spend as much time as you can over the next few months reading this forum. This is the most robust exchange of information there is.

Stop stressing. You'll be okay.

Best to you.

MBAnderson profile image
MBAnderson in reply to MBAnderson

PS. What's the difference between a bungalow and a house?

JAS9 profile image
JAS9 in reply to MBAnderson

noun

a low house, with a broad front porch, having either no upper floor or upper rooms set in the roof, typically with dormer windows :)

MBAnderson profile image
MBAnderson in reply to JAS9

Thanks. Then, by all means, they should stay in their bungalow, right?

gemsmum profile image
gemsmum in reply to MBAnderson

Thanks for your help and I have started reading the forum trying to get information. Am I on the right forum or is there one for UK citizens? JAS9 is correct, our bungalow is on one floor, living accommodation, bedrooms, bathroom etc. My dilemma is do I move to be closer to my daughter and grandchildren and live in a two story house and hope if it is PD, which looks likely, it will progress slowly. I have been walking quickly today for 40 minutes but have to be careful as I also have Atrial Fibrillation. Kind regards.

park_bear profile image
park_bear in reply to gemsmum

There is no hurry to make a decision. First take some time to adjust to your likely diagnosis, then read about the measures you can take, such as high-dose thiamine.

Also, the Datscan is not reliable for early-stage Parkinson's - you may not get a clear answer.

ParlePark profile image
ParlePark in reply to park_bear

Park_bear can you please tell why a dat scan is not reliable for early stage PD?

park_bear profile image
park_bear in reply to ParlePark

The dopamine deficit does not show up very well early on.

ParlePark profile image
ParlePark in reply to park_bear

Thanks!

andrehypnotic profile image
andrehypnotic in reply to MBAnderson

Should you be living in the U.K. In a 20 bedroom house with no upper floors it is classed as a bungalow!!

Do not DatScan. Do not move. I am serious.

gemsmum profile image
gemsmum in reply to

Thanks for reply, why no Datscan, is there a reason?

in reply to gemsmum

It is not, no way necessary. A good doctor, not neurologist, can dx Parkinson's. Go to youtube videos, how to diagnose Parkinson's. With thiamine hcl, stop progression, greatly reduce symptoms. Your condition may never need caregiver.

in reply to gemsmum

Diagnosed 2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –

Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... ; …

Parkinson's Relief, Questions and Answers

Guide:

1. Read page, About, open links.,

2. On Files page, open B1 FAQ document.

3. On Files page, download First Appointment document, answer and submit.

4. read Announcements

5. Website: Dr Costantini's guidelines on Parkinson

stopparkinson.org/en/table-...

Xxxsss profile image
Xxxsss in reply to

Hi my name I’d Rosemary. Did u do this schedule and also did u start Thismine when u were diagnosed

in reply to Xxxsss

My schedule, yes. But now I am trying 1g in morn and 1g late afternoon. I started thiamine long time after dx

Icequeen10 profile image
Icequeen10

Definitely going too worried, about too much,, too soon. What works for my leg cramps is taking 400 or 500 magnesium, one tablet or capsule every morning and evening. Datascan is not conclusive proof that you have PD and results will.not prevent you from driving..

Lionore profile image
Lionore

It may be that in the UK the medical bureaucracy will label you as having PD and therefore take your drivers license away even if your driving skills are fine. Also the Datscan is expensive. If the doctor prescribes Sinemet and you improve you most likely have PD. As many here recommend use the early years to get with a regular exercise program, improve diet, start B1, etc. read everything here. We have to be our own advocates!

Oumaannie profile image
Oumaannie

I was diagnosed with PD 6 years ago and wasted a lot of time worrying about things over which I had no control instead of making an effort to keep myself informed of what can be done to improve my symptoms. there is a lot of information on UTube, especially on suitable exercises for patients with PD, you can even teach yourself how to fall to minimise injuries. I can recommend a lecture titled: Parinsons, a guide to survival.

A last comment: Do not expect even your nearest and dearest to undertand your condition, they don't. It takes a very special person to help you to get their understanding and to help you cope with that inner loneliness. I hope you find someone, they are rare, and usually not your partner or a family member.

Remember every day is a battle between you and PD, I hope you win more than you lose!

Regards, Oumammie

4000Nights profile image
4000Nights

My sister has a tremor in her chin but she doesn't have PD. I have PD but don't have a tremor in my chin. Your neurologist doesn't even sound certain that you have PD. Datascans don't really confirm PD as much as they rule out other causes.

If you are 71 and your tremor just appeared, it is probably very slow progressing PD if it is PD at all. So no need to panic.

One thing you could do is have your doctor prescribe low dose Carbo/Levodopa and see if it helps.

In the meantime, stay active. Exercise is the best cure for PD.

gemsmum profile image
gemsmum

Thanks to everyone who has replied, all the posts have been very helpful. Still can’t make my mind up whether to move nearer my daughter and family. Kindest Regards.

Lionore profile image
Lionore in reply to gemsmum

As others have noted, if it is PD it may progress slowly, especially if you start exercising consistently, so there is time to decide on a move. Are there apartments with elevator access near your daughter? Another option if needed down the road and dealing with steps is a stair lift. All of us older folks with or without PD should plan for the future versions of ourselves especially regarding safer homes and family support.

gemsmum profile image
gemsmum in reply to Lionore

Thank you Lionore for your reply. My husband has suggested stair lift if needed in the future, he doesn’t want to live in an apartment so that is out.

Lionore profile image
Lionore in reply to gemsmum

Oh boy. I retired as a geriatric care manager (social worker) and dealt constantly with people who said I will never——————-. My “never” is a raised toilet seat because it screams decrepit person lives here”. When it’s time for a change, it will come ready or not. Who knows; maybe your husband will need care before you.

Kevin51 profile image
Kevin51

My NHS neurologists have been much better than the one I saw privately so i would keep your waiting list active and get a second opinion. Although the treatment only deals with symptoms (partially) it is better to know the position so you can plan - as you are concerned to do. I have a 3 year UK driving licence after notifying dvla and my insurance is unchanged; my nhs neurologist signed that off. I drive 600km to central france and back each month and am 7 years on from initial tremor showing. My Afib was more of a problem re fatigue but I had a cardiac catheterisation 18 months ago which has removed that for now. Good luck with your planning!

Kevin

gemsmum profile image
gemsmum in reply to Kevin51

Thank you Kevin for the reply and it’s good to hear from someone in the UK concerning my driving licence as I was worried that if my Datscan is positive, if I have it, they would take it off me. I have PAF so only have AF about twice a year, used to worry about that but now PD has taken over. Do you manage with stairs in a house or like me are you in a bungalow? Are you on any medicine for PD. Kind regards

Kevin51 profile image
Kevin51 in reply to gemsmum

The house in France has two ancient spiral staircases and I have lots of stairs in the UK! My balance is fine but I miss those automatic rebalancing reactions so need to be vigilant. I take 200mg of extended release sinimet after breakfast and 100mg at night as I found it helps my sleep which is important. I have a supply of 50mg immediate release sinimet which I use as and when I think I need a boost. I did not take any meds for 4 years but they do improve my quality of life now.

Seacrab profile image
Seacrab

Hello Gemsmum,

My husband was diagnosed at age 50, 7 years ago. The diagnosis was a long, agonizing process of eliminating other potential illnesses. Once his condition was confirmed, we realized he had symptoms long before feeling unwell: he lost his sense of smell approx 20 years prior for no apparent reason; he also had night walking, talking, thrashing, screaming, apparently due to the fact that the hormone that keeps most of us from acting out our dreams is missing in Parkinson's patients. Yes, he has cramps as well.

His meds keep him moving and his progression has been relatively slow. What seems to helps the most is keeping active; boxing in particular (even for women!), walking, ect. every day. And an antidepressant. Acupuncture may help with the cramps. Also joining a support group is helpful. You can and will live and happy, active life with Parkinson Disease! Blessings!

Johnboy46 profile image
Johnboy46

Hi gemsmum, I also live in UK (London) and was dxed 2 years ago after a six months referral wait at the National Neurological Hospital .I'm 69 now. At the time I only had a tremor in my right arm. Because of several injuries to my right shoulder (motorcycle and football) everyone presumed it wasn't PD ,just nerve damage. But after a MRI scan I was dxed with PD. Since then, I have the occasional loss of balance, in the dark, and slight loss of smell. I take Sinemet 12.5/ 50 three times a day. I also use CBD oil and Hemp oil when needed. The meds, etc. calm the tremor down considerably and my main trigger is stress. I luckily retired 9 years ago and stopped driving (my choice) last year. We live in a 2nd floor flat and haven't thought about moving yet. Time will see. Our son lives 10 miles away and our daughter 180 miles. We still see both at least once a month. The side effects usually come from high dosage over a long time.

Good luck

John

You may also like...