Hi I was diagnosed in November 2018 with Parkinson's aged 54 it was quite a shock to say the least I had struggled with walking for 2 year prior to this and had been attending a podiatrist for a collapsed foot arch which is what I had been diagnosed with. It took two years for Parkinson's diagnosis I started taking 3 100/25 levodopa and benserazide daily. I had a follow-up appointment in February 2019 and my neurologist said he was disappointed with my progress and had thought my walking would have been improved and it wasn't.he then increased my dosage by taking a further 3 50/12.5 tablets daily and said he would see me in a couple of months.However he arranged for an appointment in September and near the date he cancelled and I was told it would be a couple of months til new appointment. At present my walking is worse and I now have poor speech does this mean disease is progressing or is it due to dosage please help
Symtoms getting worse?: Hi I was diagnosed... - Cure Parkinson's
Symtoms getting worse?
Sorry to hear that. Changes are frightening and anxiety inducing.
You said that in September your appointment was delayed by a couple of months. When is your next appointment?
Hi thank you for reply hospital said I they would contact me in a few months about new appointment I haven't heard anything since September.
That's no good. You should contact the hospital and attempt to establish when you can see the nuero.
What kind of testing did you do to rule out other neurological conditions before your PD diagnosis?
Hi I had a brain and cervical spine MMR scan to rule some other things out my neurologist said he was 99.7 percent sure it is Parkinson's I don't have tremor just walking difficulties speech problems but that's a new problem and REM but again that has got worse since I started the levodopa
Pan13,
As do many physicians, many neurologists tend to evaluate hastily and oversimplify potentially relevant differential diagnostic algorithms.
My first 3x(25/100) c/l induced noticable improvements in my walking.
Your neurologist may be barking up a wrong tree.
Differential Diagnosis | Parkinson's Toolkit.
m.toolkit.parkinson.org/con...
Parkinson Disease Differential Diagnoses.
emedicine.medscape.com/arti...
Thanks for reply what should I do next then to clarify situation
Since 25/100 c/l induced no improvements, consider writing a polite letter and request differential diagnosis. Mention that c/l as side effects.
Carbidopa-Levodopa Oral : Uses, Side Effects, Interactions, Pictures, Warnings & Dosing - WebMD.
To clarify this for us – is it the case that levodopa has not provided any improvement at all?
It's a tricky one because since November. 2018 I have seen chiropractors physio therapist and recently been having accupuncture and exercising. But I still drag foot and I haven't much use of left hand. Physio has taught me to walk better putting my heel down first so I have to concentrate on this when out however someone who hadn't seen me for a few months has said my walking is worse and I know my speech has declined. Just prior to diagnosis I was working ,driving and speaking ok.now speech is slurry and its quite an effort to speak.
After a night's sleep does the first dose in the morning make any difference?
I start the day feeling quite rigid after first meds this feeling wears off
What it is worth I have a similar set of symptoms and a similar response to levodopa – it helps only a little bit with motor impairment and stiffness. I only take small amounts of levodopa – 100 mg once a day because more than that is adverse rather than helps. Too much causes tightness and jerkiness my legs. Each of us is different. In my experience one can only determine the correct dosage by experimentation. Also, in my experience controlled-release / extended release versions of levodopa are better than immediate release.
It's progression. Start high dose thiamine hcl soon.
So sorry to hear what’s happening to you , upsetting, frightening and leaves you feeling out of control of the situation.
So difficult to know exactly what to do. I think I would go back to your GP who knows you best and ask to be referred for a second opinion, my husband recently did this as we were unhappy with the Neurologist we d been seeing.
We ve since been to a second neurologist in a different hospital we requested, same diagnosis which we knew, but difference in approach was so much better. Felt like we were listened to and helped.
Rather definitive way of diagnosis whether you have PD in progress is to have a facility capable of giving you a DaT scan, which measures the output of dopamine coming from the cells specific to PD that reside in the particular four sections of substanta nigra in the brain that produce the dopamine whose gradual death andn decline is responsible for what we call PD. As I said, definitive.
PD seems to have an early beginning progression far before you begin to see overt symptoms...it has to do with some subtle changes in a related but not well observed neurotransmitter system in your brain known as your tryptamine system. That itself doesnt tell much, at this point it is just a word. Perhaps decades before you develop PD symptoms there can be changes, deficiencies, dysfunctions, in your tryptophan functioning and it is not well understood or even caught.
So it is not at all unusual anymore for someone to have what will eventually become dopamine producing cells in your brain start to die and start showing symptoms in your later years, which can be as early as 40s or 50s.
Regardless, the earlier you get some kind of resolution of your health picture the more you will be able to do about it and the better off you will be, and by that I mean by miles. So it is very important that you are somewhat assertive on your own behalf, fill in that vacuum if you will, and do not wait to be cued or invited.
Dopamine is also produced and used in other parts of your body but the life and health of the dopamine in your brain is the part that is what you may be diagnosed with and very much concerned with. It is very important to have that DaT assay, there really is no other really good way to determine. Used to be the way to tell was by autopsy. So now that they have a DaT scan is really a godsend. Use it if you can find a center that has one. I can't stress this enough. DaT scan. DaT scan. DaT scan.
Either way it is up to you to do your pushing with the medical community to get yourself checked out and thoroughly. Being passive, waiting for someone to show interest or concern that you use as your own signal to be concerned is not the way to go, because it is always possible for busy practitioners in a very complex field to miss things or not take things as important as they should...rather, they should take their cues from YOU and how important YOU project it is to get your condition well evaluated (and not casually evaluated). So take the trouble if you can. It is definitely worth it.
See a new doctor::soon
I suggest you see your gp and see if you can get some azilect. It slows down reabsorption of dopamine and may slow progression.
Also make sure you don’t eat protein before taking meds.
If you can see a different neurologist that would be even better.
How is your sense of smell and arm swinging?
Please don't worry at all. Keep calm and have patience.
Yes! Your disease is progressing. The reason I assume , which you need to confirm, you are only dependent on medicines and neurologist , doing nothing yourself to fight this disease. Pardon me if I am wrong.
Medicines in this disease are prescribed for a period of six months in an increasing order. If you don't exercise, the brain does not get proper oxygen and depends fully on medicines.
Pl do walking, jogging, yoga, stretching and be vegetarian. Reduce your weight and bring it to your body measurements.
This will detox your body and you will feel light and happy. The toxins should fully be removed from body by being on liquid diet for 2 days.
The world wide medicines for this disease are common- levadopa carbidopa, rasagellin, pramirol and others to control side effects of these medicines.
Pl see another neurologist, he will probably prescribe the same , might be with changed in name and dose of medicines.
You need to be cautious about constipation, urinary problems and prostrate condition. These are the side effects of these medicines.
Pl get PET Scan done for your brain which will give you a very clear picture of the damages being done in your brain and accordingly you will be in a clear position to discuss with your neurologist rather than accepting advice blindly.
Pl shrug off the fear from you and face the problem with confidence.
Take care
I am not popular for saying this to patients, but the truth will always come out.
There is no Pd medication that does ANYTHING TO SLOW DOWN THE PROGRESSION OF PD! That is the long and the short of it. You can take as much or as little as you like, it makes no difference.
Yes! Medication does sometimes, not always, mask one or two of the symptoms, but that is only temporarily.
Every Pd case is different and yours will be different to everybody else's.
What is common to all of us is that Pd can affect any movement we make subconsciously. We don't have to think about what our legs and arms are doing when we walk, bring food to our mouths, write, drive, swim, in fact almost everything we do regularly. That is because Pd attacks thew area of the brain that handles all of our 'automatic' movements.
Fortunately, we still have the full use of our 'conscious'brain, which is capable of controlling all our movements, but we have to do it 'çonsciously''
If you are interested in learning more then look at my website - reverseparkinsons.net and contact me. I don't charge anything and I am not selling anything other than my book, which you don't have to buy because everything is in the website.
Good luck!
I’m in exact the same boat as you. I was diagnosed in Feb. ‘18 and have been on Madopar in varying doses since. I tried swapping to Simemet but in both cases I found the medication to be ineffective. I can genuinely detect no difference before of after having taken my morning dose (or any dose for that matter). My walking has become quite appalling sometimes with stooping forward and taking involuntary small shuffling steps. Also, my speech has become effected to the point where I find myself not wanting to use the phone or socialise much any more. I also have an impressive collection of other symptoms (tremor, weakness, difficulty doing buttons up, back pain, etc). At my last appointment with my neurologist he seemed singularly disinterested and just told me that Levodopa doesn’t help all symptoms. I came away feeling thoroughly disillusioned!
Hi thank you for reply we sound like we are definately going through the same I dread telephone conversations and socialising can be so embarrassing. But on a positive I have emailed my hospital for a new appointment to see what else can be done regarding the medication. I'm sorry to hear you have had such a bad experience to with your neurologist don't give up we all deserve better and may just have to be more proactive in our dealings with the medical professionals. Your reply certainly helped thank you
Hi Pan13
Thanks for your reply. I’m currently awaiting appointments for both physio (for my gait) and speech therapy in the hope that some non drug-based assistance may be able to help me. I’ll let you know how I get on (if the appointments ever materialise). I’ve been waiting over 20 weeks already! 😊👍
Hi Pan13,
Do not panic, my experience is very much the same, even down to the fallen arch/podiatrist bit! I can not give you answers, but my opinions which follow are based on my own personal experience.
Is your pd getting worse?
It is degenerative, but I'm guessing you mean worse in such a short time. I doubt it for the following reasons.
Too much or too little L.dopa can make symptoms worse, and its seems likely your dose is not correct.
It is not the 'miracle' pill for some that it is for others.
Stress has a massive negative effect on pd, MASSIVE! Personally it can turn me from reasonably ok to literally a statue in secs, with days to return to normality. Imagine now the effect of being diagnosed a short time ago with pd!, then given powerful psychoactive drugs which most likely are not the the correct dose and then left to your own devices!!!
It is outrageous!
There is often, as in my case, a period of relief in 'knowing' what's wrong, but then the enormity of the situation we find ourselves in emerges, and it can take a long time to settle. The key, in my opinion, is acceptance, don't deny the disease accept it, let it in, then we can kick its arse around a bit!
So my opinion, based on my own experience is that the symptoms / worsening of symptoms are probably nothing to do with suddenly declining health.
The only thing I would add is that my biggest regret is I did not challenge the initial diagnosis at the time. Also out of interest, I was collapsed arch, foot dragging, etc at times and was put on requip xl for the first 4 years not L.dopa though prescribing 'fashion' changes all the time.
If you saw 3 different neuros you'd get 3 different prescriptions, and that says it all for me.
Best wishes & Good luck
I'm certain it will pan out well for you.
Nige
Thank you for reply it certainly helped me. I have contacted my hospital requesting an appointment to discuss these worsening symptoms and I've asked to have my medication reviewed. As I don't think I'm living the best that I can with PD. Thanks for your help good luck with your PD
Importantly, seeing a movement disorders specialist, as a second opinion, would seem to be the way to go, here. PD is notoriously difficult to diagnose, in some cases. Non relief of, at least some symptoms ( like stiffness ), when taking Carbi/Levodopa, is something that needs to be re-evaluated, by a professional neurologist, in my opinion.
Many Thanks for your reply I have now realised I need to be more proactive and have contacted hospital to request an appointment to discuss medication thank you for help
People say 5years is the honeymoon period it me 4-5 years to get my meds right as for consultants or who ever you see you have to push them get on Thier case and keep pushing don't forget you have the condition not them if your worried they should make an appointment for you to see someone don't forget we all have good days and bad days with this shite condition keep fighting and stay strong
I am slightly older than you(58). But I have had 3 neurologists--you need a new one--and I really love the one I'm with now. He is at Georgetown University named Dr Torres-Yaghi. I have experienced miraculous improvement with balance using Rasagiline and Mirapex. There is a lot more hope than this group sometimes lets on. Dr Torres-Yaghi is also repurposing a Leukemia drug for PD use and this appears promising. It is one of 4 drugs in Fox Foundations last brochure. Genetic therapies for PD are also being developed. Exercise is really important as John Pepper points out...without that you wont be getting neurotropic growth factor, which you're going to need until the cures are ready. I hope you feel better real soon! Paul
Thank you for reply I have contacted my hospital requesting a new appointment to review medication feeling positive thanks for help and interesting information yes I do stay active and use exercise bike and equipment at home but I realise the social side is important to so I've joined a Tai Chi group also enjoy walking stay well and thanks for support much appreclated
I was diagnosed at 54 also. That was three years ago. The first 6 months were a rollercoaster of meds that weren't working. My doctor actually started talking DBS to better control my tremor. I went to a naturopath to get everything checked head to toe before considering brain surgery. The best thing they did was change my diet. I think after that I started absorbing the meds better. I was not tested for SIBO (small intestinal bacterial overgrowth) but they had me do the protocol for it for 6 weeks. It was very difficult was so worth it. I also exercise a lot and intensely. A year after my diagnosis I got certified as a Rock Steady Boxing coach. I have never been healthier in my life except for this thing called PD. Hang in there. You can be better than you are right now. If you are not exercising, you need to start and work up to an intense level for you. I also think it is important to be in a Parkinson's specific exercise class if there is one available to you. Not every day will be great. I still have bad days and off times every day but I can handle them now. A good combination of exercise, the right meds, and a good diet can help you manage this beast and move on with your life. You can do this hard thing!
Hi thank you for such kind words and support I think seeing a naturopath is interesting I will look into that I eat mainly a vegetarian diet with a lot of fruit exercise daily using exercise bike and home gym equipment although I could maybe increase this I walk alot and have accupuncture every couple of weeks and started Tai Chi I did attend pd circuits for ten weeks and have my name down for next course rock steady boxing sounds interesting I've heard its beneficial thank you I definately feel more positive kind regards
Hi Pan13
I being dx since 2010 and still take 4 times Sinemet a day we people with PD are different
I have different side effects like all of us which we have to deal with just hang on the cure is already here we all waiting to be approved
My best regards
Serg
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