Brother just been diagnosed, desperate


#1
Hi,my brother is 46 and has just been told that he has Parkinsons. He has had symptoms over the last eight years, unexplained blackouts, fainting fits, loss of speech, uriniary problems and most recently a bad tremor on his left side and agonising back spasms. A couple of months ago, his GP finally referred him to a neurologist, who diagnosed early onset of Parkinsons and told him to come back in six months. Early last week my brother suffered terrible back spasms and shaking of his whole body and his GP prescribed him Diazepan and Tramadol. It is really distressing and dibilitating for my brother and I am really concerned because the only tests he has had done are for Vitamin D levels, which were low and his GP told him to take vitamin D tablets for, and there seems to be nothing being done to help him. The GP has said that he will refer my brother back to the neurologists as soon as possible. We have asked if an MRI could be done to rule out anything else that may be wrong, but they seem adamant that this will do no good at all and on the basis of a half hour consult with a neurologist, my brother has been told it is Parkinsons. I am desperatley worried for him, can anyone give advice please? Thank you

#2
Hi, Belle.

So sorry to hear about your brother. All I can suggest is that he asks for a Datscan to confirm diagnosis of Parkinson's. Believe it's pretty reliable. There are no doubt others on here who'll have more advice for you. Meanwhile, all the best & take care. x

#3
hi belle welcome to the forum,im ali been dx for 11 years,im 43 years old. belle im sorry you and your bruv are feelin very low about this situation,you say your bruv had blackouts and faintin fits,personaly ive not had nothin like that happin,only when i stand up to quick and go dizzy,or when blood pressure has been high. i me self would like to no off other members or the moderaters if they no about blackouts or faintin fits to do with parkinsons,cus i was not aware it was a symtom,no disperect to you belle,i may of had pd for 11 years but im still learnin things me self. it must be horrible for your bruv and you to watch also,im so sorry.x i would ask agin belle for a mri scan ,and also a dat scan if you able to. pd is a difficult thing to dx,and in half a hour on clinical ways ,with out any tests. i no the dat scan is the only test which can get the clossest to sayin pd. but mri.eleminates other things. there is a lot of surport here on puk belle,and im sure there will be members here who will be able to give you some advice, i wish you both luck,and please keep us informed x:smile:

#4
Hi Bella and welcome to the forum, I'm sorry to hear of your brothers dx. I have been dx for 11 years now and like Ali said in her post before me, I'm still learning about Pd every day. In respect of your brothers condition and in particular his having blackouts, I would like to have a bit more information. When I worked full time I suffered from really bad chronic fatigue which resulted in my passing out many times. I wondered if your brother is experiencing something like that, at the time my neuro said that he felt that the blackouts were a result of me pushing myself too hard and my body just refusing to go any further and it would just shut down. It was pretty scary for anybody around me, I once passed out in a restaurant and my head just dropped into my soup bowl! I never ever recalled going off to sleep or anything but woke up hours later feeling like crap. It's never happened since I retired, so in my case, it certainly seems like my neuro was correct in his assessment of the situation. I do believe that your brother needs to seek some advice, there is a Parkinson helpline number on this site, perhaps they might be in a better position to advise you, it's worth a try for your piece of mind at least.

In respect of your brothers back spasms, I too have those, but as I said previously I was dx 11 years ago and its a well known fact that the Levodopa meds can cause dystonia over time. I've recently been x rayed in order to quantify my pain and it appears that my back is twisting, as a result of long term muscle spasms. You haven't said what meds your brother is taking so it might be worth talking to somebody about these too.

I'm sorry I can't be of any more help,but please do consider chatting to somebody on the PD helpline.

take care

glenchass

#5
Hello Belle,

I am so sorry that your brother is having all these problems, it does seem strange that they have not been fully investigated as my husband has had PD for thirty years and we have met many people with different symptoms but non like these. If you have to wait a long time to see the consultant see if he will see your brother privately if he can afford it as the worry just makes everything worse. Do ring the PDUK helpline and they will be able to give you more advice and help. Please let us know how everything goes.
best wishes
Vivian

#6
Thanks for all the advice everyone, my brother has not been given any treatment yet, just the Diazepan and Tramadol and told by his GP to take at least an hours exercise everyday! It seems that he is stuck in the system, the actual diagnosis of PD was given to him by his GP, from a letter that the neurologist had sent to him. We live quite far apart and I am unable to go with him to the doctors, so it is very frustrating.We can only hope that when they eventually get him an appointment with the neurologist, they can sort out some more comprehensive tests. Thanks for the advice abut the datscan too, I will pass that info onto my brother,and see where it gets us.

#7
ok belle,good luck all of you with helpin your dad out,you will get there in the end,like you said in the systerm,which can be a pain in the butt as we all no.like some other mebers have put in there posts to you already theres help always on the puk helpline,wish you all the best,please keep in touch how you gettin on :smile:

#8
I have the impression that with young onset most people get some sort of scan to rule out other possible conditions. As the symptoms you mention don't seem to me to be classic/straightforward ones and there is no actual test for PD this is an aid to the clinical diagnosis. As I was 69 when symptoms appeared, my age was another factor in the dx. Another test is to try Sinemet which counterracts the lack of dopamine and if the patient responds this tends to confirm the diagnosis. You are entitled to change your neuro if you are not happy and the ideal for PD is to have a neuro who specialises in movement disorders. Your GP seems sympathetic and could support this.

#9
I've just remembered that the letter my GP said "probable idiosynscratic PD" idiosyncratic meaning "no known cause". After I had responded to the Sinemet the neuro letter heading to my GP dropped the probable. I was left to decuce that the dx was now more definite. My neuro is a man of very few words.

#10
every one with PD has different symptoms and i can assure you no one person is the same. My advice contact a PD specialist nurse you should check your local health authority. A DATscan is very useful which I had done it provides a clear identification of PD. Your brother has the right for a second opinion, which i also did and i am very happy with the results, don't wait keep pushing.

#11
Thankyou all for the help and advice, it is much appreciated and I will pass on all information to my brother. :grin:

#12
Quote from Parkinsons UK publication on the Diagnosis of Parkinsons:

SPECT or DaTSCAN
A certain type of SPECT scan has become widely used for helping specialists confirm that there is damage to particular brain cells, containing a chemical called dopamine.9 SPECT is a type of nuclear imaging test that shows how blood flows to tissues and organs. This type of scan is known as a dopamine transporter scan or DaTSCAN. Damage to these dopamine producing cells leads to the stiffness and slowness of movement common in Parkinson’s but similar damage may also occur in some other rarer neurological conditions. So an abnormal DaTSCAN result cannot give a definitive diagnosis of Parkinson’s.
A normal DaTSCAN can be helpful in showing that a person’s symptoms, particularly tremor, are not the result of Parkinson’s, but may result from another condition, for example, essential tremor10 (find out more about essential tremor on page 4).

#13
Thankyou Eileen,still finding my way round the site and the forum, so any help is gratefully accepted.x

#14
Its a while since I was last on the forum to ask about my brother,Dave, and I just wanted to update. Since I was last on here, my brother has been started on medication for PD, I am not sure of the name( will find out), but it doesnt appear to be working despite being increased three times. He attended a Parkinsons meeting and found it really helpful, he was even approached by a Neurologist, that was giving a talk at the time, and asked if he wanted him to give Dave a second opinion. To date, my brother has only seen a neuro once, who then gave him the diagnosis, via his GP. All contact with the neurologist has been through the GP, passing on doasge instructions etc...he has increased the drugs three tmes now,but nothing has changed in Dave's condition, and despite regular visits to the GP to ask for a scan, the GP has flatly refused to authorise any further investigations.This week the GP has given him beta blockers.. Dave has also now started to develop loss of cognitive skills, really bad mood swings and is finding it very hard to work because of his constant tremor(resting and active- which apparently the neuro says is "unusual") and symptoms of confusion and disorientation.
Two weeks ago, my sister in law spoke to the GP and told him that they wanted a second opinion with the other neurologist that had approached them. It turns out that he is in the same department as the neuro that diagnosed my brother, the difference being that this second one actually specialises in PD, unlike the diagnosing neuro that specialises in Epilepsy!! This is a living nightmare for us all, and my brother is beside himself with worry about what is happening to him. We are still waiting to hear that Dave has been referred for a second opinion, numerous phone calls between the neuros secreatray and to the GP to try to move things along, just seem to be getting nowhere. Meanwhile, my brother is in rapid decline,has anyone else had these difficulties, or is it just in his area? I feel that the health service has let him down so badly and he is just getting worse by the day, with no help, its appalling!! :cry:

#15
Hi Belle,

Thank you for taking the time to update what has happened with your brother.
Was it your GP who chose the original (Epileptic specialist) neuro. or was it pot luck?

Anyway its good hear you will be seeing a PD specialist

Best Wishes

#16
hi belle i was diagnosed at 41 2 years ago..i had a ct scan nothing showed then i had a datscan which apparantly showed it as pd..iv been on co beneledopa and requip and to be honest neither has done anything..told pd nurse n she said there the best to be on ????

#17
Hi Eileen, Thank you for your reply, it was the GP that referred my brother to the specialist, who turned out to be a specialist in epilepsy. It has been over three weeks since he asked to be referred to the other specialist...and it is apparent that the GP has done nothing about it. My sister in law has been on the phone trying to sort it out. The GP has asked the first specialist for his permission??.. for Dave to get a second opinion..and then promptly went on holiday and has not actioned the referral...so we are just playing a waiting game.:frowning:

#18
Hi Saintly7, thanks for your reply too...if we could get my brother near a specialist...I hope we will be able to get the dat scan that he so desperatley needs..he is deteriorating on a daily basis now,its very frightening for him..and so worrying for us. Thanks for your support.:grin:

#19
Hi Belle,

Just so you know where you stand

This is a quote from NHS information site - web address http://www.nhs.uk/chq/Pages/910.aspx

"You can ask your GP or another healthcare professional for a second or further opinion (an opinion about your health condition from a different doctor). Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.

For more information, see about the NHS: your right to choice.

Consultants are normally quite happy with this.

I must say I find it highly significant that the other consultant offered to see your father. I wouldn't have thought they would normally do this.

#20
hi belle...i think its ridicoulous for you to be pleading for a consultant..in the merseyside area they bent over backwards for me to be honest..ordering scans at walton pd nurses physio etc which is how it should be when your ill.i hope it gets sorted for your brother soon :grin: