Waiting for diagnisis

About Parkinson's and health Newly diagnosed
1

Hi all

This is my first post and am a bit apprehensive

About 9 months ago I was hospitalised with what was thought to be a stroke but mri and ct scans came back clear. I was then referred to a neurologist who I saw in November, after some tests he concluded that it could come under the parkinsonium umberella so I am having a datscan next week

Among my symptoms are resting tremor in right hand, trouble with my balance i.e. staggering to my right when walking or standing etc, stiffness and aching to my neck, shoulders and right arm, memory problems such as forgetting what word comes next during a conversation or forgetting what the subject was part way through. I am tired and lathargic all the time and get very frustrated and irritable very quickly.

If the datscan is normal could it still be pd and do my symtems point to this?

2

Sorry to be the bearer of bad news, but it sounds like classic PD to me.  Don't despair.  PD can be very slow moving and with all the existing drugs and those new wonders in development, you should be able to live a fairly normal life.

3

These symptoms are the exact same as mine plus 1 or 2, and i am under the parkiniosim aswell waiting for the final actual diagnoses. best of luck buddy hopefully thats all the symptoms which come up and you can live a good life with medication :).

4

Thanks guys

I will keep you updated

5

Hi all, well i have just been diagnosed with mild P/D, featuring mild (not all the time) tremors in my limbs, my gait, balance, memory etc seem to be ok.Not on any Meds right now, but have been perscribed by my consultant (a) Sertraline 50mg or Dosulpin. About 2 months ago my GP perscribed Propanolol and then Citalopram 10mg. Both these meds caused Diarrhoea. So my question is....is there a drug that can suppress the Tremors without any bad side effects????

6

Hi Hawkeye,

I am sorry you have not yet been prescribed meds that help with your tremors.

The drugs you have been offered are used to treat depression and anxiety and I wonder if you have seen a neurologist? If not you can ask to be referred to one who will know about the wide range of drugs that are specifically used to control Parkinson's symptoms such as tremors.

Perhaps you will be able to manage without meds for a while if the only problem is tremors now and again.

You can phone the helpline and talk to a nurse knowledgable about the use of Parkinsons meds.

There are lots of drugs to help, and non-drug supportive regimes.

We can offer comfort on the forum and share experiences but we are not doctors and I think you need good medical advice.

See what you can do to access it and keep in touch via the forum.Good luck!

GG

 

 

7

Hawkeye, hi. I don't recognise the drugs that you are on, but I'm new to all of this too. So, other contributors - check that I've got this right. I've been told by my specialist, Dr Foltynie at UCL, that one of the keys to understanding of the problem is that a compound called dopamine is the important chemical carrier, interracting with the nervous system. PD is apparently explained by damage to the brain cells that produce dopamine. Your DAT scan will help to show this deterioration. Without dopamine, your muscles just don't respond to the brain's intent. People describe it as 'stiffness', but it's really loss of control. The drug 'Levadopa', brand name Sinemet, releases dopamine to replace that which the PD brain now does not make enough of. The second important drug is ropinirole, brand name 'Requip'. It modifies the cell structure in some way to enhance distribution of dopamine. A combination of the two in the right strengths enhance manufacture and distribution. Seems to me, it's all an exercise in better supply chain management at a micro level!! But, there are behavioural side-effects as your brain may get suddenly swamped by excess dopamine.

8

Nevbar, your DAT scan probably will turn out to be a leading indicator to your condition. For me, after the results of my DAT scan, knowing that I had Parkinson's was a turning point in my worry level. Bummer, yes, but at least it helped to cure the fear of the unknown.

9

Hawkeye,

There is actually  quite an array of drugs and permutations thereof for when you decide you need PD meds . The "gold standard" is recognised to be sinemet but for a number of good reasons, it is not always the first port of call.  You may not want to delve into this yet as your symptoms are mild although I personally found the tremor I had meant I wanted to go on PD meds straight away they worked but not everyone's tremors respond.  PD is a rather individual condition.  I would echo Goldengrils query as to whether you are with a neurologist (essential), preferably one specialising in movement disorders.  ...  

This link takes you to this sites free to download publication on treatments and therapies for PD:

http://www.parkinsons.org.uk/content/drug-treatments-parkinsons-booklet

.If it doesn't work for any reason, go to the home page, click on support for you, then publications and search for "treatments and therapies.

 

10

Hello Eileen,

Thanks for the response, in addition to my GP, and in terms of Neurologists,yes I am under two actually. Dr.W Gibb (Dept of Neurosurgery @ QA Hospital,Portsmouth) and Dr.Scaravilli, (Dipartimento di Neurology @ Ospedale san Angelo, Mestre, Italy), in addition, the local Parkinson Specialist Nurse is due to visit me next week. Its all very new to me,plus a little scary too. Excercise does help, I cycle at least once a day, and walk, play Tennis etc.However I do find that the tremors become more pronounced if I am stressed, anxious / nervous etc.

11

Unfortunatly being anxious or stressed does seem to have an effect on tremors. I also find if i have been overactive when i quieten down i have my tremor. I was diagnosed with early onset PD almost 3 years ago and only began taking Ropinerole 6months ago. I am still doing well.

12

I had quite a tremor in my right hand when first diagnosed.  The first neuro didn't want to put me on meds right away.  The second one I saw, put me on amantadine and mirapex and almost overnight the tremor disappeared.  I suffered no ill effects.  Mirapex is a dopomine agonist that can have serious side effects but I haven't experienced any of them and my doctor keeps a constant eye on any changes in my behaviour.

Exercise does help and stressors do cause problems.  I can get stressed at very minor things that never would have bothered me pre-PD.  I am not sure if that is the drugs or the disease that makes me emotional.  I get choked up watching Youtube replays of Britain's got Talent. 

I have experienced many of PD's symptoms.  They seem to come and go.  At the moment, nobody would even know I have the condition but in the past, at times, it has been noticeable.  For example, my voice almost disappeared even with voice therapy.  Then my doctor added L-dopa and "TA-DA", I got my voice back.  Also on the upside that tremor rarely shows itself anymore.  You can read about my journey at www.wpgchap.blogspot.ca

Remain positive, avoid stressors, take the drugs and exercise.  There is life after diagnosis.

 

13

Hello Lizzy,

Are there any side effects with Ropinerole? And does the drug suppress the Tremor?

14

Just been to see my GP, she (plus my Neurologist) have suggested I take Sertraline 50mg per day. Hopefully after 10-14 days I should notice some differences.

15

Hello everyone,

I have just been reading through some of your post & found them all interesting. I am newish to all this too. My diaganosis was Christmas eve, (which was rather a nice present to received). I am sorry to hear about some of your problems mentioned in your post. It does seem to be all concerning when first hearing about this PD.

I have only seen the Dr once a Mr Kock & he seems very nice & helpful, & told me as well as being a Neurology Dr, its also told me that PD was his main field of interest. So i'm assuming he knows a lot about it. When told I couldn't take it in if honest, & the poor man must have thought me mad, as I kept trying to persuade him to check my right shoulder & arm. The reason for this is because 3years ago when I started to become weak on that side & unwell generally, I had surgery to repair 5 tears in my shoulder. The very next year I had more surgery to remove a nasty mole on the inside of the arm on the same side. So you can imagine, I was putting my weakness all down to this, thinking have they cut into a nerve or muscle. I know they did tell me they had to remove more during my mole surgery then they expected. I kept begging this poor Dr Kock to take a look as I didn't want to accept what he was saying about me having PD.

Unfortunately though, he said he was sure, & bless him he sat with me & the nurse & they calmed me down with a chat & they had a cuppa & bicsicuit. I couldn't I felt too shaken if honest.

I have never heard of any of the drugs that you are all mentioning. & I am so sorry about the side effects that you are suffering Hawkeye 16. I do hope now you are feeling better & have sorted the medication out. I know from other medicines for another illness I have that when side effects cause such problems its very difficult to function properly & carry on your daily life. It makes my confidence really slump. You sound like you lead an active life too, so I do hope your feeling better. That goes for the rest of you on here who have been posting. 

I have been put on a drug called Madapar, I started with one tablet aday now take 3. Have any of you been on it, & if so what are your thoughts about it? I also have just received my 1st appointment to see the PD nurse on the 12th feb. One other thing I would like to ask you too, is you all mention a datscan?? I was told I would be having a ct scan on my head, (which is due in 2weeks time) But i've now been told i'm having an MIR one done. Again have any of you had that done?

Well best wishes to Nevbar, wpgchap,silentwolf, Hawkeye,Goldengirl,Markhenrys Eileenpatricia, & lastly Lizzy65. I wish you all well. Its encouraging to read some post when they say they have had this PD years, & it hasn't really upset their lives too much, lets hope its the same for all of us. I Know my diaganosis was almost 4weeks ago now, but i'm still finding it hard to understand, & a little scary of my future now. I had planned to move this year to be by the sea in Norfolk, But this has left me a little worried now about the future. Take care all of you.xxx Autumnleaves.X

16

Hi Autumnleaves, you're doing just fine.

Madopar is a levodopa drug, the main drug for treating the symptoms of PD. It's mixed with another drug to help its act better. Sinimet is similar, but it's mixed with a different drug. Look at the publications on this site - there's one which explains all the key drugs.

best wishes

Semele

17

 Hello Semele,

Thank you so much for explaining the Madopar drug to me. Its just I haven't read many post where anyone else is taking it, & I wanted to know if its a commonly used one, & any opinions about it.  Its the same with the scans I have seen a lot of post talking about scans but not heard many mention what I am having an mri. I am assuming the mri scan is a normal procdure for pd again.

I am sorry for being a pain on here & keep asking questions, I am finding it hard to understand it, & trying to come to terms with things. As soon as my appointment is here to see the PD nurse who will be a support i'm sure I won't need to post.. I see her in 2 weeks. Apologies again, & thank you for your post I appreciate it.

You take good care Semele, & keep as well as possible & warm too. Autumnleaves xx

 

18

Hi Autumnleaves, I've been worrying about you the message you sent a few days ago gave me the impression you would ring me soon.

I can help you out with all sorts you know thats why i done a online course about PD knowledge can give you the power to fight this there are far to many people out there with their heads stuck in the sand about conditions such as ours.

 I had to attend a funeral yesterday so I am a bit out of sorts myself Pete was a really nice guy and he's life had taken a turn for the best with Penny.

Its just so sad he was only 62 and did not deserve a early death. unlike some of the nasty people we have in this world. 

Keep safe & well BB.

19

Hi Autumn leaves, you're very welcome. But don't stop posting - we all need to hear from each other whether asking for help or helping others.

Best wishes

S

20

Well after taking Madopar 125mg for the last 3 weeks, there has been no significant change / reduction to my tremor cryI shall carry on taking this medication until my next consultation in May. Currently, my PD symptoms are just tremor, everything else seems to be functioning normally.

When i was first diagnosed, i underwent several 'piano' tests. Was not offered a scan at all. Is there a test they can do to detect the amount of Dopamine in the body?