I've posted before about Madopar and Sinemet not working for me and it's still not doing a great deal to help. At my 6-monthly chat with my neurologist recently I was keen to explore with him other issues like :-
1. Is he sure it's PD (could it be MSA or another PD+ mimic?)
2. Homeopathic / alternative treatments like those discussed on this forum (HDT, mucuna pruriens, grapefruit juice, etc)
He was quite dismissive of any suggestions to explore alternative diagnosis. No further tests or scans were offered and when, as suggested by helpful people on this forum, I posed the question about seeing a movement disorder specialist rather than a neurologist, he said "who do you think you're talking to? That's what I am".
In short, I came away from my meeting feeling uncared for and un-listened to. Nothing very positive was said and when I questioned once again why it appeared my meds (Sinemet) weren't doing much for me, he simply said it doesn't address all the symptoms of PD. They won't help with walking, handwriting or speech problems, for example. No alternative drug regimes were offered or even discussed.
So, the message was basically "just stop complaining and get on with it"
I'm left wondering if Iv'e been expecting too much. I understood that people can have PD for years before it becomes really intrusive but my progression feels to have been quite rapid. In the space of 18 months I've gone downhill very quickly.
My summary is...
Diagnosed 18 months ago (Feb'18)
Taking 3 x 187.5mg Madopar or Sinemet
Never felt anything in the way of "on-off' periods causing me to question the effectiveness of the drugs in my case.
Walking has become very bad (& difficult) especially up even slight inclines
My gait is very stooped forward most of the time, throwing my centre-of-gravity forward. Knees seem permanently bent and trying to counterbalance my weight causes involuntary curling of my toes, with lots of resulting soreness and back ache
Balance is all over the place
Frequent and quite severe dizzy spells due to orthostatic hypotension (BP sometimes measured at around 75/47)
Speech has become somewhat difficult (very quiet, higher-pitched and with increasing difficulty getting words out)
Low strength, no stamina, difficulty getting up from sitting.
I know PD affects everyone differently but do these symptoms seem normal and to be expected so early after onset? I was expecting a more gradual decline but have been surprised at the degree to which I have become compromised in such a short time.
Sorry this is such a long post but any thoughts or comments gratefully received.
Many thanks (Paul, 61 y/o, UK based)
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Sorry to hear you don’t seem to be getting much support from your neurologist. Do you have a Parkinsons Nurse ? My husband ( diagnosed 13 years ago age 49) does not see the consultant- talked over our heads , didn’t seem interested. He sees the Parkinson’s nurse every 4/6 months and she’s on the end of the phone / email when we need advice . Do you take any other medication? X
Many thanks for your reply. Yes I have access to PD clinical specialist who works in the community and is a lovely lady. Much more sympathetic than the consultant.
In addition to Sinemet. I have been on Rasagiline but was told to come back off that recently as it was thought to be contributing to my low blood pressure .
John was on Asilect for a number of years about a year ago he changed to Xadago a new MAOB inhibitor which has def made a difference to his off periods . ( changing involved coming gradually off asilect over a two week period , this showed us that the Asilect wasn’t having much affect as it didn’t really affect his symptoms. )
I know a number of people have had a good response to high doses of Thiamine ( lots on health unlocked about this ) John has found the best treatment is exercise 😀
It may be you need to look at your situation from another angle. Hopefully this link and PDF download would provoke further thought and a line of action 👍🏾🏋️♀️👍🏾
Shame on that doctor! They should be slapped upside the head! Why would we bother taking the meds if they didn't help with walking balance handwriting etc etc. I don't know your system in the UK but I hope you can find a doctor that will actually work with you and be of some assistance. This person is useless.
I'm sorry for what you are going through. It is probably causing you to question your sanity and the right to question one in authority.
I suggest that you watch on YouTube JIM BOWER of the Mayo Clinic, MAKING A DIAGNOSIS OF PSPS, CBD, OR MSA. I think the date is July 20, 2018. I think it will help you to understand why the neurologists need time to change you from ParkinSONISM is to a more defined DX. The presentation is excellent.
Immediate release Madopar or Sinemet are usually prescribed by default. I found immediate release completely unsatisfactory - very uneven. Initially too much and than too little levodopa. The CR - controlled release - versions are much better - they provide an even flow of levodopa.
Orthostatic hypotension is often accompanied by supine hypertension - hazardously high blood pressure lying down. If you have not already done so you should get a good blood pressure cuff, and measure your blood pressure when lying down in the evening.
It does seem you are experiencing a very rapid progression. When I was in that situation Qigong helped me immensely, but it is not for everyone. My experience here: healthunlocked.com/parkinso...
Hi there, we live in the Uk and are at the moment changing our Neurologist. My husband has PD and was diagnosed in 2015. We paid privately at first to see our Neurologist and then saw him under the NHS every six months.
He diagnosed my husband using a few tests although we both thought it was Parkinsons before this. He was given modopar at a low dose and then moved to 100/25 x 3 per day and has recently added in a half dose in the morning as he seems to need a morning boost.
His symptoms are mostly stiffness, tiredness, back ache, slowness in getting dressed and tremor and dyskinesia and toe curling but not all the time.
At our last appointment which lasted all of 10 mins my husband said his tremor was more apparent to which we were handed a prescription and told to add the medication in gradually. We were told by the pharmacist it was pramipexole a dopamine agonist which he felt he didn’t want to add to the medication due to awful side effects, so he didn’t take it.
He went to GP to explain all this and he is now going to the Neurology hospital in London in October. I feel we never had any sort of dialogue with our previous neurologist who I know is a well qualified and knowledgeable person who never spent more than 10 or 15 mins at each appointment. He still has nobody to ask if there are any problems, we don’t have a Parkinsons nurse although we did ask.
My husband does take HCL and other supplements as suggested from research which have kept him reasonably stable as well as daily walking, aqua aerobics and some equipment in the gym. The neurologist did say to take vitamin d which surprised me as he never mentioned it before.
We hope we get more info and help in October and will keep you posted.
My husband also spent a week at the Italian Parkinsons centre which was an amazing help and support to him. Exercise based as well as diet and nutrition with 1 to 1 help with an exercise programme and talks about living with Parkinson’s. Alex the founder has Parkinson’s and is a true inspiration to PWP.
Many thanks for your feedback. Yes, its frustrating having chats with the consultant limited to around 10 mins every 6 months. Communication is so important. I think I would be much happier if someone would at least take the time to explain the roadmap, how far along the progression I am, and whether my rate of degeneration is normal. I feel I've been left to guess the answers to most of my questions!
Yes think this is how we see it! Apart from seeing PWP in Italy, we were surprised how different everyone was with both symptoms, progression and how they were coping with it.
I ve been researching on this condition for about 9 years now, although my husband has been diagnosed since 2015 and think my husbands PD has progressed slowly but it’s really difficult to know.
Seems every time another problem occurs it’s difficult to know if it’s ageing or a PD symptom. We also guess the answers and hope we re not putting too much faith in a new Neurologist!
i feel you need to branch out and move, please slowly try to exercise and work up the intensity.
I to had wonderings if i was diagnosed correctly, to which i was. This forum did help me to understand things better, my neurologist just said "you just need to be philosophical about life", my wife and i still dont know what the actual f#$k he meant, he didnt care.
So 6 weeks ago i said screw this and started powerlifting in the gym everyday, with cardio and weights to varying intensity. Difference between you and 1 im 36 and your 61, but the fundamentals are the same. Being sedentary in our day to day life is easy but its not rewarding,
we need to move and from my personal experience its a damn strong tool to fight Parkinson's , my madopar lasts longer, i get bugger all tremors and the diskynesia from the meds wearing of has nearly reduced by 95%.
Im not saying powerlifting is for you but i am saying regular exercise with varying intensity is, your body will thank you , yoir brain will thank you.
Your far from dead so flog the pants off your version of your Parkinson's and make it wish it never infected you. Make it live with you not you live with it.
You could have mold or chemicals In your home or your environment. I had Parkinson’s like symptoms because I had mold in my house and didn’t know it. I suggest that you do an ER MI test for mold on your house and find a Doctor Who believes in alternative healing and have him check your urine. My immunologist Dr Irma Ray took a urine test and found that I had mold in my urine and from that she knew I had mold in my house. Sure enough I had it checked and that’s what it was. The only thing I could say is please listen there’s a reason why we get symptoms like this. Too many people just believe the lies the doctors tell them and they take drugs and have no chance of helping them in the long term. All they do is try to stop some symptoms but they make more symptoms that are worse than the ones you started with.
Get your house tested for mold get your body tested for mold and check for chemicals. Good luck
From the time of my diagnosis to the time I retired (two years) from largely a desk job, I started having tremendous back/neck/shoulder/hip weakness and pain, and poor endurance. This despite often walking 1-2 miles a day and being of normal weight. Was sent for PT where initial evaluations horrified me - very little core strength, atrophy of leg and hip muscles, terrible balance, awful front leaning posture. I couldn't even do sit-to-stands from a moderate height. Never did I think I could go downhill so quickly. Therapists helped me work on core strength (NO crunches!)/balance. I used a cheap Amazon back/shoulder strap/brace just enough to remind me to correct my posture. Once my posture improved, the RIGHT muscles did the work of supporting me when I walked, went up stairs - I think that's why I had so much atrophy - my neck muscles had been supporting my forward leaning head, not my trunk and leg muscles. Am working very hard to continue and maintain these improvements, and am able to sustain cardio workouts for the first time in a while. Finally, my stamina is nearing what it was 3 years ago. In my first year of taking Sinemet, I was confused about "off-periods" - wasn't sure if I experienced them or not. Therefore, I got pretty sloppy about dosing and eventually found out what they (off periods) meant for me: Restless feet (or foot), worse sleep, increased anxiety, increased stiffness/pain in back and legs, weaker voice (can actually feel my uvula hanging uselessly in my throat). Not much change in tremor. I'm now pretty happy with Rytary , selegiline, B1 1500mg/day. I do take GF juice, which I believe is to help maximize the effects of levodopa while curbing peaks and lows. After my first ever kidney stone, I realized I was chronically underhydrated, and once correcting that, my low blood pressure normalized. These are just steps I've taken along the way, ones I found what worked for me. As the Parkinsons honeymoon wanes, many modifications are in store. I believe that Parkinson's does quite a number on us, and our bodies take the path of least resistance in dealing with it. What I didn't know was that a strong will and discipline would be so important in order to cope, and I've had to start from scratch on those!
I certainly hope you can find a physician who listens to you and thinks broadly.
Hello PW I think we all expect too much we want these feelings and uncomfortable feelings we get every day to be gone for good but unfortunately it's not going to be that easy I started on 100mg of sinemet three times a day when I was diagnosed three and a half years ago now three and a half years later I'm on 250 mg cinnamon four times a day it's working okay but I see that that amount even starting to dwindle and last less and less as the weeks go on I don't know what road I'm going to turn onto next or what poison I'm going to pick to try next after the sentiment doesn't work anymore you don't even go up to I think 2,000 mg per day most doctors don't want to go over that but my doctor told me he has patients that he has prescribed more than 2,000 mg a day of sentiment which is mind-boggling but good luck stay strong and Godspeed everyone have a good weekend bye
Much of what you wrote mirrors my own experience. I'm 57 now, diagnosed about the same time as you in 2018 and put on Sinemet 25/100 3x/day. Recently saw a new neurologist who upped the prescription of Sinemet to 4x/day and added Selegiline.
Sinemet doesn't help with gait problems? Makes me wonder what then is the point? Walking is a big problem for me. I stagger and lurch about, stick to the floor when I need to turn and pitch forward a lot.
I have an appointment for a consultation on DBS in late October, and if I were able to work I'd save for focused ultrasound.
Thanks for your reply. Whilst I'm sorry to hear of your problems, it's slightly reassuring that I'm not alone in my frustrations and symptoms. Since Sinemet doesn't appear to do anything for gait/walking, and in my experience doesn't seem to do anything for my other symptoms either, then as you say, it does beg the question what is the point?
Apart from feeling quite under the weather and weak/incapacitated 99% of the time, I'm becoming hugely frustrated that here in the 21st century, medical science (or at least the system) doesn't seem able to offer me anything in the way of help.
I haven't come across focussed ultrasound before. I must read up on it. And regards DBS, my neurologist said that since I wasn't showing signs of response to Levodopa-based drugs, they wouldn't consider me a suitable candidate for physical intervention such as DBS. So I'm caught between a rock and hard place. Drugs don't work and no alternatives are on offer!
If you have a weak balance or walking issue focused ultrasound is not for you I believe.
What focused Ultrasound specialist don't telling people is, and only at the lastminute before the treatment and ready to start and when you there to sign a pice of paper that you will agree the outcome and even any complication arise they do not responsible. The reason behind that is they can only work currently in one side of the brain. And if both your hands shakes you can pick and chose you want the improvement to your left hand or the right one. Your Joyce. You see they never say this in the advertisement.. Now comes the really bad part at the hol focused ultrasound process .. If you willing to sign and go for it. After the treatment you will lose most likely 10% or it could be even way more on your balance in that side of your body and legs and that side of your body becomes weaker and maybe never recover again and the shakes can be return after a year or even 2 year or who knows. No guarantee. So if you weak all ready, and serious walking issue with poor strength , but you still able to manage walking, you could end up in the wheelchair after the Focused Ultrasound treatment. And gained only one hand improvement really. I suggest you if you ever decide to do the focused ultrasound ask all about this what you just read from me now, so you can find out and hear yourself these sad fact about the so called permanent treatment for Parkinson or Essential tremor and then make your own decision very carefully if you willing to take the chance.
Paul, I live in the US.I seem to be having the same problems as you do. My neuro sounds just a brazen as yours does. I sometimes wonderwhy I go back to him. Anyway I had to go to the gastrointeroligist and during a conversation with him he casually told me there were not very good Neuros in this area where I live. (Ventura Co.,Cal .)I would like to change but I don't know to who. A possibly good one is about 75 miles away. I don't drive and someone would have to drive me, and that is only 1 visit. I am 89 years old and it is hard for me to travel distances. I have had PD for about 2 years and my doctor puts me on the least amount of Sinemet as possible.He doesn't believe there is anything else. I really don't feel any different before or after the medicine. Thanks, Lois
To find well qualified movement disorder neurologists go to Parkinsonsfoundation.org and go to the expert care page. Lower on that page is a search the resource map in blue. Click on it and then you can put in your zip code to pull up highly qualified doctors. A good doctor is a godsend. We travel 2 hours to get to what we think is the best practice in our part of Texas. As we only see them once or twice a year it is worth it.
Check your reflexes. They are normal in PD and MSA, hyperreflexic in motor neuron disease, MS and other nerve damage. You will need someone to assist you.
Do you have any Anxiety ? Is any of your shoulder hurts ? How's your tremor? Both hands have tremor? Your foot is shake when you sit ? You said you have weak knees and band walking out of balance right? Your BP is high kind off or in the low side?
No I don’t have anxiety and my tremor is mainly on my right side. My BP is mainly normal apart from when I get up from a sitting or lying position - then it tends to drop significantly
Orthostatic hypotension — also called postural hypotension — is a form of low blood pressure that happens when you stand up from sitting or lying down. Orthostatic hypotension can make you feel dizzy or lightheaded, and maybe even faint.
Orthostatic hypotension, or postural hypotension, describes the condition where an individual’s blood pressure falls when they stand up from a sitting or lying position. It can be defined as a decrease of at least 20 mmHg in the systolic blood pressure or 10 mmHg in diastolic blood pressure.
It is thought to be due to the delayed constriction of the blood vessels in the lower body. Due to the delayed constriction, the blood remains pooled in the legs for a longer duration with less returning to the heart. This reduces cardiac output and causes orthostatic hypotension. Mild cases are common and can occur in anyone. However, it is most commonly seen among the elderly and individuals with low blood pressure. Severe decreases in blood pressure can lead to fainting and injuries from falls.
Medication to treat the orthostatic hypotension, such as fludrocortisone (Florinef®), midodrine (ProAmatine®), or erythropoietin (Epogen®, Procrit®). These drugs work by increasing blood volume or by constricting (narrowing) blood vessels.
So you should discussed this with your family doctor and get the medication to trait this asap. The tremor can be from the circulation of the blood vessels as well.
You Welcome PWal.. Let me know the outcome. Many times Parkinson like symptoms shows up some different illnesses and doctors and neurologists intend to mistake the diagnosis big time. Given the fact mistreated illness and wrong medications can lead to side-effects including tremors as well.
And one more thing.. Parkinson usually starts on the left side of the body and can cause frozen shoulder as well big time. Very rare in the right side. I honestly don't think you have Parkinson, so no wonder why Sinemet don't work at all for you. You should check this out at the walking disorder clinic just to rectified if this is Parkinson or not. But like I said I don't believe it is based your symptoms.
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