Can anyone help me with my condition?... - Parkinson's Movement

Parkinson's Movement
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Can anyone help me with my condition? I am living in South Africa.

babyshoes
babyshoes

About 7 years ago I started feeling very, very anxious and my neck started pulling to one side and slight tremmor too. I use to use artane in a very weak dosage not because of Parkinson's but the Neurologist then said I can give it a try...it may just help me for what he diagnosed me for and that was "Torticollis" and "Antecollis"! Now, about 6 months ago my neck got worse and was shaking badly at times causing me to withdraw from social life. The neuro I seen in October put me on Carbilev but just made me feel very sick and then changed my medication after 4 months to Baclofen (a skeletal muscle relaxant. That did not either help. Now I'm on Clonazepam 1 mg 3 times a day. This is not helping me at all. The Neuro said that if this doesn't help...all they can offer me is Botox injections in my neck muscles. I did have a brief MRI scan and appeared to be normal. The thing is this shaking of my neck really gets me down and depressed!!! I don't know what to do because these injections (Botox) is quite expensive and will it really help? PLEASE HELP...surely there must be something that can help to stop the shakiness because it's terrible. It interferes with my daily tasks and am embarrased with it and therefore I remain indoors which is not a pleasant thing. What's more I'm becoming a granny with my first grandchild in August and can't even arrange a Baby Shower for my daughter. Feel hopeless but trusting the Lord to help me. Will be grateful if anyone can help me or give some good advice. Thank you so much.

42 Replies
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Hi Babyshoes

So sorry to read this. It is not clear what your diagnosis is yet is it. An MRI scan will not show Parkinsons for that you need a DAT scan. Parkinsons is classically on one side to start with. Have you noticed any of the other signs? And except for the nausea did the Carbilev help with your symptoms?

Are you able to get an opinion from another neurologist ?

Thank you Hikoi, my diagnosis from the first Neurologist was the Torticollis neck and Antecolis too! That was about 7 years ago. Then he prescribed Artane saying to me "you do not have PD but I'm prescribing this tablet Artane for you as it may help with the Torticollis neck". Well, I'm so confused with all the GP"s I've seen and Neuro's. Most say I do not have PD because my hands are not shaky, only my neck. My Neuro sent me for this MRI two weeks ago...what for, I don't know! No, the Carbilev did not help me at all. If it did, I would have just taken a tablet for the nausea. Well, this is the only Neurologist that I can see now as I don't have medical aid. It's the Neuro at the hospital. Hope I've made it a bit more clear to you. I've had a nervous condition for many years prior to the 7 years ago. Mainly depression and anxiety. Thanks for replying to my question and hope you can assist me further. Thank you.

babyshoes
babyshoes in reply to babyshoes

I have replied once. Did u maybe reply a second time to my question? Thank you Hikoi.

As a retired PT with 35 years experience it sounds like you do not have PD but rather idiopathic torticollis. I have seen 5-10 of these cases through the years with some reporting relief from PT. Have you received any treatment yet? Some cases have resolved the way they came... no reason what so ever. Good luck.

Hidden
Hidden in reply to etterus

I do have PD.

When I finally saw a PT (after several years) they provided the most help I had received at that point.

babyshoes
babyshoes in reply to Hidden

Thank you so much...don't know how I missed your post but anyway good to hear that the PT could provide you with such help...but mine is a "Torticollis neck" and am sure they will help me too.

Hi Eterus, thank you so much for your reply. So PT I take it is Physical Training. Well, I also did not think I have PD but rather the idiopathic torticollis as you say...very terrible thing...my neck goes into a spasm and pulls to the left and then my neck shakes uncontrollably at times and my family and friends don't know what's going on with me...so now I'm seeking help desperately. No, I have not received any treatment...only medication. What do you suggest I should do? Thank you very much.

shasha
shasha in reply to babyshoes

going back to youe earlier stement - wher you sad you were told it was not PD - i dont have any tremor at all and i was dxd in jan 2010

babyshoes
babyshoes in reply to shasha

Yes, but the doctor thought it was PD but now he says it's Torticollis neck. I've been doing some exercises and stretching of my neck and there is already an improvement with the tremor in my neck. I don't have any other tremor in my body at all. Only my neck. They say with PD it normally starts in the hands. So, I now know for sure that it's not PD.

The PT I am referring to is physical therapy-physiotherapy. It can be helpful in pain management and sometimes muscle spasm-tone reduction. I had some success with ultrasound and electrical therapies along with manual stretching and muscle re-education. It can be very difficult to manage though and not every therapists is focused on these difficult problems.

Years ago there was some research that implied a lesion in the brain stem that controlled neck posture. It implied that there could be a electrical stimulation surgery like deep brain stimulation for PD. Ask the doc's if there is anything to it. Good Luck

Well, thank you so much for trying to help me but now what will these doctors do to help me? I know a bit about my problem now and really going to ask them if there is anything to this electrical stimulation surgery. Is there anything else that I could try at home that could relieve some of the shakiness and spasms. I don't want to injure my neck further. I was a breech baby and also had a very bad car accident many years ago where the car rolled several times and was unconcious for a few hours. My head had a huge lump on it which bled a little and a lump the size of an egg on my forehead which did not bleed and my whole face was black, purple and blue! Thought it would never come right but it did! The doctors at that stage could not find anything wrong with x-rays etc. Years after that my neck use to give me problems with pain and they took x-rays and they found some problem in one of the levels (cushions) but did nothing further about it. You must be American because those doctors seem to go deeper into these things than most other countries. That's just my thought. Thanks again and also for wishing me good luck.

Babyshoes... The fact that you have an injury history with disc-cushions involvement might indicate that a trial of PT treatment with manual traction-stretching could be helpful. Try to see if the doc's can recommend a PT or Osteopath or maybe a chiropractor. As long as the approach is not too aggressive you might be better. Good luck.

Thank you very much for your advice. I will be seeing the Neuro soon and will find out about that. Wish me Good Luck all the way! Will talk again. Nice to have someone who knows about this Torticollis to help me!

Sorry, but I forgot to ask you. My neurologist was talking about Botox injections if my medication did not help. Now, I don't know what you think about that but I think it will worsen the shakiness in my neck because if my neck muscles are completely relaxed then they can become weaker, not so? I am not going to let them give those injections but as a matter of interest, I would like to know if you agree with me on that one. Thank you.

Babyshoes

How fortunate that etterus was able to answer some of your questions. I had a quick look on line and found these two sites which are specific to your conditon and appear to have on line communities. You may like to visit them as well as here. The first site has a forum with a section on neck dystonia and a thread on Botox.

dystonia.org.uk/index.php/a...

torticollis.org/

Best wishes

Hi, thank you so much for sending me these two links. Will visit them too and see what happens. It's so nice to have people giving advice and trying to help with my condition. So there are people in this world who care. Yes, Etterus has helped me quite a lot already...and so grateful to all you precious people. Regards.

Babyshoes.... the right PT with botox could be very helpful.

babyshoes
babyshoes in reply to etterus

Thank you so much for your help. I just thought that botox on it's own would cause my neck to be more shaky but now am happy to hear that it won't with the right PT.

Ask your doctor if DBS, deep brain stimulation, would help your condition. DBS takes away the shaking in people with Parkinsons. I'm not sure if it would work or not for you, but it's worth asking. Hope you get some answers. Many blessings to you and your family

babyshoes
babyshoes in reply to Lupi

Thank you very much for your reply. I will for sure ask my doctor if DBS would help for my condition. The more answers I get, the more I can ask my doctor about them. Blessings to you and your family too!

ShakeDaddy
ShakeDaddy in reply to babyshoes

Shakedaddy here: Have talked to my neuro several times and he feels dbs is for later stage pd and can be dangerous . Sometimes people take it too early....Michael J' Fox (God bless his heart) wanted to still work and in the long run ended up worse. For Me....../dbs is last resort. good luck and "shake~a~leg" !

:o))

babyshoes
babyshoes in reply to ShakeDaddy

Hi shaky Dad...thank you so much for letting me know about this dbs! So glad u let me know. Did not sound too good when I looked bit up on the internetut now I know...that is as a 'last resort'. Much appreciated! So did ''Michael J Fox have it done? I don't know about that...would like to know what happened with him?

tejas21
tejas21 in reply to ShakeDaddy

Hi, I beleve MJF had a pallendomy (sorry spelling) and not a DBS. I have and am still going strong 7 years after surgery and 21yrs after dx'd at the age of 32. After dbs got me up out of a wheelchair and now I hold down a full time job as an engineer. dbs gave me my life back. Look it has not been easy and you have to be patient but from crawling to bed at night to riding motorcycles again. thanks and good luck

babyshoes
babyshoes in reply to tejas21

Thank you very much for the info! That's really wonderful! So, from a wheel chair to an engineer is a miracle...can only be God that helped u with this dbs. Good to hear from you! Thanks and God Bless u even more!

babyshoes
babyshoes in reply to tejas21

Thank you very much for the info! That's really wonderful! So, from a wheel chair to an engineer is a miracle...can only be God that helped u with this dbs. Good to hear from you! Thanks and God Bless u even more!

I forgot to mention, acupuncture or acupressure could help too. You could always call and see if they would give a free consultation.

Yes, will also keep that in mind. Thank you so much! Regards

tejas21
tejas21 in reply to babyshoes

me again. babyshoes where in SA are you ? I live near Hilcrest in KZN

Hi tejas, I live in Port Elizabeth, S.A. I see you also live in S.A....that's good to hear from someone also in S.A. Regards

the following is just my opinion, seek formal medical approval,before action

i think you should get off the artane,

there is adrug called propanerol,( inderal) treats essential tremor ,if this is what yu have

if yu take drugs for another condition,interactions cause unusual effects,

if inderal does not work ask for a trial of ropinerole,a dopamine agonist treats parkinsons

hope this helps

professor

Hi professor...thank you for your post. Would like to know what the reason is why I should not take Artane tabs? This tablet 'Inderal' (Generic Name: Propranolol ) sounds good for anxiety disorders and tremmor but I only get the tremmor in my neck and they say it's Torticollis. Otherwise, I'm not on a medical aid and see the Neurologist at the Provincial hospital here where I live. I don't have PD. It's Torticollis but not in a very bad way. My neck pulls to one side and then starts shaking. This is only about 7 months ago that this shakiness in my neck started. Hope to hear from you soon please. Thank you.

Hi professor...thank you for your post. Would like to know what the reason is why I should not take Artane tabs? This tablet 'Inderal' (Generic Name: Propranolol ) sounds good for anxiety disorders and tremmor but I only get the tremmor in my neck and they say it's Torticollis. Otherwise, I'm not on a medical aid and see the Neurologist at the Provincial hospital here where I live. I don't have PD. It's Torticollis but not in a very bad way. My neck pulls to one side and then starts shaking. This is only about 7 months ago that this shakiness in my neck started. Hope to hear from you soon please. Thank you.

professor
professor in reply to babyshoes

ARTANE IS FOR PD, YOU DONT HAVE PD,IT MIGHT INDUCE TREMOR,( MY OPINION),A VERY SIMILAR CONDITION CALLED ESSENTIAL TREMOR, OFTEN MISDIAGNOSED AS PD...ONE FEATURE OF ESSENTIAL TREMOR IS A YES/YES OR A NONO

HEAD SHAKE, ALTHOUGH PROPRANEROL IS FOR ANXIETY, IT HELPS IF YU HAVE ESSENTIAL TREMOR, IN ANY PART OF YOUR

BODY, ARTANE IS A N OLD PD TREATMENT, AN AGONIST SUCH AS ROPINEROLE,,EXADURATES,,AMPLIFIES THE PRODUCTION OF YOUR OWN DOPAMINE,THIS IS BETTER,FOR YU LONG TERM

A DBS A (NEURO STIMULATOR )MIGHT HELP IF YOU CANT GET A RESULT DRUG WISE. BUT THIS IS A MAJOR STEP( LAST RESORT)

YU MUST GET UP IN THE MORNING AND KICK THIS IN THE NUTZ

ATTITUDE IS EVERYTHING. YU MUST BE THE BOSS

ADOPT A STRONG OUTLOOK,ITS 75%UPSTAIRS,,AND 25% DOWNSTAIRS, IT HAS A FOOTHOLD WHICH YU MUST DEFEAT

PROFESSOR

This is very interesting. Now I understand it better. So, can one ask your doctor to prescribe propranerol? This is very interesting information you've given me...I can hear that you know what you're talking about. Yes, I must be the 'boss'. Agree totally with you. Also about the 75% upstairs and 25% downstairs. This is the kind of information I was looking for and nobody could really give me this type of answer. You are really helping me! Attitude...that's so important and also positive thinking! Thank you so much for this reply. Hope you continue giving me good advice.

Professor, just want to know...what's the difference between 'Propranerol' and 'Propranelol' because the one is for Migranes and other one for anxiety, panic attacks and hypertension (heart problems too). Thank you so much.

Sorry professor, I want to know the difference between 'prolanolol' and 'prolanerol'. Thank you! I only noticed now that I had a slightly wrong spelling. Is it maybe the same drug?

ASK FOR A HALF INDERAL..SR,sustained release( propanerol,) yuv got me wondering now) TO SEE IF THIS WORKS YU JUST TAKE I PILL IN MORNING i hope it helps you , THIS IS A WELL TOLERATED DRUG NO

WORRIES

Hi, my Neurologist sent me for a MRI of the brain and neck! Seen him yesterday and there's nothing medically wrong in my brain but my neck is where the problem lies and says this could also be causing my neck tremmor! To make a long story short...this is the comment from the Radiologists. "There are chronic disc osteophytes protruding posteriorly at the C3/4 and C5/6 levels. The C5/6 osteophyte complex causes slight stenosis of the spinal canal at this level. No spinal cord pathology is seen." Now the Neurologist has referred me to a Neuro Surgeon...but I don't want to let them operate on my neck...but will go to hear what he says. I only see the Surgeon on the 29th June so if anyone can help me with good advice on this will be greatly appreciated. At the moment I'm on Baclofen tablets to help for the spasms. Also on Rivitrol for anxiety! I get a very 'stiff' feeling in my neck and can't move my neck properly and mainly on the right side from my neck, shoulders, arm and hand, I feel dull pain and also 'pins and needles' in my arm and hand. Now, I am not feeling so good and need very good advice on this. Is there maybe something else that could help for this condition?

Babyshoes

As you are aware this is a site for people experiencing or supporting those with Parkinsons. While participants endeavour to be supportive they are not able to give specific medical advice.

Have you visited the two sites suggested above? As they are for people with your condition I would think that you are more likely to find answers to your questions there.

Best wishes

Yes, I have but no one can answer my question. Just thought seen that I, in the beginning was dxd with Parkinson's that someone would be able to give me some advice...but understand if no one can give me advice on my question. Thank you.

, YOU WANT TO STOP THE PROBLEM, PROBLEM IS EXADURATED BY YOU WORRYING ABOUT PEOPLE SEEING YU YU KINA BECOME HYPER SENSITIVE, NERVES KICK IN.ITS GOT YU gets worse,,,,yes

a little info

THEY GIVE INDERAL TO RACING DRIVERs TO improve motion jerks CONTROL ANXIETY AND KEEP THEIR HEART BEAAT UNDER CONTROL

IT IS ALSO THE RECOGNISED AND ONLY RELIEF FROM ESSENTIAL TREMOR, random shakes WHICH CAN AFFECT ANYPART OF YOUR BODy neck inc

whatever youv got, this drug is what i would go for

I CAN ONLY SUGGGEST YU ASK FOR SOME

youu must focus and not go off at a tangent, try things if it does not work

ditch it, try something else, yu need to try and get something that works

i think surgery is a last resort

hope you get a result

PROFESSOR

Thank you PROFESSOR! That is so nice of you to take time to help me. Really appreciate it very much! Can one only get these tablets with a prescription? If so, I will ask my doctor to prescribe them for me...is very much worth a try! It sounds a very good tablet, especially for my condition. Thank you so much!!!

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