hopeless

[Jmellano]

I was diagnosed in 2015, yet still, I think I have something else. I do have the PD symptoms; bradykinesia,speech,swallowing issues, poor fine motor skills poor handwriting, urge incontinence, ,poor balance, lack of motivation, apathy, extreme fatigue , fleeting sense of smell, drooling, difficulty rolling over in bed, anxiety and weakness. Rock steady boxing gave me a long pd honeymoon. I do believe exercise is the best medicine for this disease, but my correct fatigue prohibits me from doing intense exercise.What’s interesting is that my MDS says my symptoms as I describe them do not reflect the standard tests he gives me. Eg, the test results reflect that I am not as advanced as I feel. I feel my symptoms are deteriorating quickly. MDS thinks 1 of 3 things could be making my symptoms (specifically fatigue) feel worse than they are ;1. Depression, 2, flucuating blood pressure or sleep issues. I have tried 5-6 antidepressants,each one for a minimum of 6 wks, none made a difference in my mood. I had a sleep study test, doc did not think it was remarkable. In 11/23 , I am being tested for dysautonomia which would show any issues with Blood pressure,

I have tried B1,redlight therapy, mucuna,mannitol and biokult, all to no avail. I have also tried azilect, neupro, ropinerole, c/l , rytary. I was taking 3 25/100 c/l 5 x/ day and I was experiencing akathisia in OFF time. MDS switched me to Rytary ; no more off time and I am taking less pills each day. No matter the Rx, I feel like crap on meds and really bad crap when off pd meds.

Does anyone else feel like the PD meds aren’t that effective for them? Since I have no tremor,it seems most available and future therapies will help those who have tremor. I am so weary. Thanks for reading my rant. I am feeling pretty hopeless now

[Hmop]

The same.....

[Jmellano in reply to Hmop]

I am so sorry. I wouldn’t wish this state of being for my worst enemy

[pvw2]

We have a tendency to not want to believe that we have PD. However, my neurologist testing various things such as balance and muscle stiffness does detect improvements with the medication. A datscan also shows that I have PD. My wife notices improvement with the medication. My main symptom is left hand tremors. I was diagnosed in 2019 and had the left-hand tremors starting in 2018. I noticed not picking up my feet enough to sometimes mildly trip ten years before being diagnosed. The neurologist said the type of PD I have advances very slowly and will continue in the future at the rate that it has done in the past.

[Jmellano in reply to pvw2]

Thnx for ur response. I have read that tremor dominant pd progresses slower. I too had a datscan and right side of brain (controls left side of body ) showed bright areas in a period shape vs. other side which showed a comma shape which made me finally realize I had pd. I wonder why datscan r not used more frequently in the USA. Even for a baseline….. I am sure the insurance companies have a say in that

[pvw2 in reply to Jmellano]

DatScans are expensive so insurance doesn't want to cover them. They tried to argue that a DataScan doesn't change the treatment. I continually argued that this wasn't true because a brain tumor could cause the initial PD symptoms, and a DatScan plus MRI would separate this. It would also detect West Nile virus, I finally got them to cover all but $3,000, It took the doctor verifying my argument to get some coverage. If one waits until the PD symptoms are prominent, but instead the symptoms differentiate to a brain tumor, the chances of survival are lower and the medical care more expensive. But insurance looks at the total cost for everyone rather than the individual, They would rather risk one person's chances of survival if that expensive is less than testing everyone else.

[Jmellano in reply to pvw2]

I am so weary of fighting insurance companies, it is sad that the insurance companies have so much power in directing our treatment

[Buckholt in reply to Jmellano]

As an outsider, US medical insurance seems more like buying a ticket to a future prize lottery

[Jmellano in reply to Buckholt]

Only there’s are no prizes if u win

[Ardbeg28]

I can't really advise you any but just sympathise with how you're feeling. I am constantly tired myself being diagnosed with PD in 2021 with no tremor. I am only on Ropinirole 10mg been off Selegiline for a month due to unavailability (I'm in UK). I've to go on Rasagaline 1mg next week but not sure if that will help my slowness and lack of other fine motor skill symptoms as well as all the symptoms you mentioned. Think I'll be given a higher doze of Ropinirole as my symptoms don't seem to be getting better. I agree I think that there's more medication help to those with a tremor than without. Unfortunately due to changing location I've been waiting almost a year to see NHS Parkinson specialist (I had to cancel one appointment & think I should've been seen earlier).

I also have heart failure which certainly doesn't help with tiredness especially now I've been told I have low sodium levels in my blood.

Anyway I really pray you can get help and feel much better soon for you have been through a lot.

[Jmellano in reply to Ardbeg28]

Thank you Ardberg28. There r several things (among many) that I hate about this disease;everyone has a different manifestation of symptoms and secondly, so much trial and error has to be done to find the right Rx (if there is a right Rx )dose size, which drug, when to take it. For every individual with pd. Doctors have to throw stuff against the wall to see what sticks. That sux that u have to deal with heart issues also. It sounds like MDS are very busy in Uk, much like the USA. They are all so busy, it is very difficult to get an appt.

[JCRO]

Jmellano,

You describe my symptoms really very well. Tremor is tiny/minimal but now both hands. Feel like cr@p 98% of the time. Stiff, slower (but not slow). I think it is PD despite no night and day response to C/L. I feel like 85% of my strength and endurance have just evaporated with the awful addition of depression and general anxiety. And dysautonomia in direct sunlight or in times of great stress. I was running a fair bit but I shredded both Achilles running on the unrunnable. So I’m walking a lot and have tried every supplement I can without knowingly poisoning myself. What a SH1t sh0w.

[Jmellano]

JCRO, welcome to my world! ironically , when under stress, i can detect a slight tremor in my pinkie. I used t o be a dancer, cyclist and racewalker, my strength, balance, fluidity is gone... pd, the gift that keeps on giving..SH1t sh0w describes it well

[WinnieThePoo]

Bassofspades recently recommended Provigil (Modafinil) for fatigue. It must be worth looking into

[Jmellano in reply to WinnieThePoo]

thnx, i have been on modafanil for about a week. neuro psychiatrist says if it helps, i should see relief in about a week, not like traditional anitdepredssants which can take 6-8 weeks to work. i have tried vibyrd, effexor,wellbutrin, pristiq, and zoloft each for about 6 weeks, all showed no effect to my depression, also tried ritalin.

[Esperanto]

Looks like your vitamin B6 (P5P) supplementation has not yet yielded results for both your PD and your PN?

In addition to the negative influences mentioned by your MDS, constipation also belongs if that is one of your symptoms. Neurologist Bas Bloem warned just last week on the Parkinson's weekend that you have to do everything you can to fight constipation. It is a great risk to the effect of your medication.

[Jmellano in reply to Esperanto]

no constipation... yet My PCP wanted to stop B6 with neuro's cocurrence as levels were too high (79.2). i no longer take P5P

[Esperanto in reply to Jmellano]

Your B6 experience is bizarre. I saw that on 13 July you still had a very low level of 3 ng/mL, started P5P supplement 27 July and now, 8 weeks later heavily overdosed with 79,2 ng/mL, despite a carbidopa use of over 100 mg, Can you tell me how much P5P you took daily during that period (including from any multivitamin/B complex) and when the test was done? That would be very helpful in understanding the stacking effect of B6.

What a tricky situation for you. There must be an underlying problem, but what on earth.... 🍀

[Jmellano in reply to Esperanto]

Pure encapsulations p50p 50mg daily. No other multivitamins or supplements with B

[Esperanto in reply to Jmellano]

Thank you so much Jmellano. It reaffirms that the stacking effect of B6 causes an overdose much faster than many people expect. A minimum supplementation stop of 2 months is wise. I myself have had a similar experience. However, after my B6 (P5P) fasting period of 3 months, I again turned out to have a B6 deficiency. Although the depletion of B6 by the carbidopa is probably less than expected, a slight supplementation of P5P in PD seems necessary. My current dosage is now only 3 mg per day.

[CaritaP in reply to Jmellano]

Beware of B6 toxicity. I had 1030 , just from a daily supplement : severe neuropathy.

[Jmellano in reply to CaritaP]

Thanks for the headsup

[Esperanto in reply to CaritaP]

That is a very high value. Which unit of measurement has been applied here and what are the safety margins? The risk of neuropathy is then real.

The same danger is also there with a B6 shortage. That is why it is wise from time to time to check your B6 level with PD. Especially with neuropathy symptoms, it is a must.

healthunlocked.com/cure-par...

[Jmellano in reply to Esperanto]

Not sure I understand what u mean by unit of measurement applied and safety margins? Checking blood levels go from $10 copay to $30 copay in 2024 . Not something to look forward to

[CaritaP in reply to Esperanto]

The lab test, in Swedish, but you can see the figures and the limits.

Lab test.

[Esperanto in reply to CaritaP]

👍 Now I am of course very curious how much B6 was in your supplement, whether this was the pyridoxine or P5P form, how long you have taken this and what your daily C/L medication might have been given the interaction with B6.

When did you have your PD diagnosis and when did the neuropathy symptoms start? It is hoped that by stopping the B6 supplementation, a repair of your nerve damage will be possible. 🍀

[CaritaP in reply to Esperanto]

I took a B12 supplement with added B1 and B6, 25 mg, for at least a year. I wanted to check my B12 level when the B6 toxicity occurred to me. I was diagnosed in February 2022 and on a 4x 25/100 C/L. I’ve had severe leg pain, some twitching, problems with gait and balance and I have contributed all of it to P, though some of the symptoms, not necessarily all, must be a result of B6. My physiotherapist diagnosed it as neuropathy, but for some reason nobody is interested in the lab results. It’s really difficult to reverse, because there’s B6 in everything I normally eat, more than enough to get my RDA. And yes, there has to be an interaction with the C/L, I don’t think it would have gone this far under normal circumstances.

[CaritaP in reply to CaritaP]

It doesn’t say if it’s pyridoxine or P5P.

[Esperanto in reply to CaritaP]

In that case probably the cheaper pyridoxine that can also be responsible for the neuropathy.

[Esperanto in reply to CaritaP]

Thank you so much for this addition. I would do a new test in 3 months and then assess whether you need a minor P5P supplementation. But not for a while now...

Let this be a warning to all the doubting Thomases that even with 25 mg B6 an extremely high overdose can occur, with all the consequences that entails.

[Jmellano in reply to Esperanto]

esperanto, did i answer all tour questions? i find it difficult to determine who I am responding to and which question i am responding to. i extracted b6 values from oast blood tests thst i can find:

12/6/22 - 4.0

1/25/22 - <2

7/12/23 - 3.0

8/22/23 - 79.2

[Esperanto in reply to Jmellano]

Hi Jmellano, we had exchanged some data before and it now turns out that your B6 situation is very similar to CaritaP’s. Your supplementation with 50 mg B6 P5P is perhaps less harmful than with pyridoxine and because you have already stopped after about 6 weeks (?), otherwise you would probably have had an even much higher B6 level. I have already seen this pattern with other members. Very valuable that you share this information. It once again underlines the danger of the stacking effect at B6 and the risk for peripheral neuropathy. Merci!

[Gymsack]

Maybe, look outside the medications and the supplements and work on improving your ability to survive and be happy in ashit show. For an example : Many times people who have a lot of pain can be taught how to handle it . Yoga and other mind over matter skills exist because they work and help people live in ashit show .

I am not trying to make light of your situation , I understand , but you can't wait for a miracle pill or something to be offered to you. It is time to harden yourself and I did not say it would be easy , it is difficult as hell but it may be all you have . It is not your fault , it is probably no ones fault but it is the cards that you were dealt . Get up, and turn over the card table and go outside . You can do this , happyness is a frame of mind.

[Jmellano in reply to Gymsack]

Todd-pa. Thnks for the encouragement. I am seeing a mental health therapist weekly

[Jmellano in reply to Gymsack]

oops, I replied to Todd-Pw below instead of gymsack

[Gymsack in reply to Jmellano]

Great , you are one of a very few people who have access to a mental health therapist and not just every 3 to 6 months but weekly. you are very lucky . One of my nieces in California is university trained to do that but she is off on maternity leave right now with my grand nephew . good luck

[Jmellano in reply to Gymsack]

thanks, she is very good and uses art therapy. although, in january 2024,my health insurance will have $30 copay per visit ,vs. the $10 copay per visit now. I am not sure I will be able to continue weekly

[Todd-pw]

Sorry to hear you’re feeling so bad. I’m sure we’ve all been in some terrible dark places with this condition. I was struggling through a bad period for about the last 2/3 months up until about 2 weeks ago I turned to the carnivore diet. 2 boiled eggs to eat through the day and Rib eye steak and eggs as a evening meal within the first few days I felt better but thought Is this just my mind playing tricks as I’m starting something new but it seems not I feel much better. Inflammation in left shoulder and arm all but gone and definitely getting more on time from meds, more energy and all round coping better. I know for some this isn’t an option but I recommend for those who can try it. I was worried about the extra protein and digestion of meat but I started with half cuts of rib eye for first few days and was fine. Although trips to the toilet are few and far between I am not constipated feeling and meds are definitely working quicker and better maybe it’s the lack of sugar also helping I’m not sure. I tried this out of hope and it seems to be working good luck to you all.

[PDKiwi in reply to Todd-pw]

Todd, my chronic pain disappeared when I transitioned from a predominantly plant keto to a carnivore diet. But in spite of thoroughly hydrating and eating lots of fat, the constipation was something else. I am now ketovore with quite a lot of plant foods but my pain has returned. Currently trying to improve my gut health with fodmap, magnesium and motility supplements. With PD never give up until you find what works for you.

[Jmellano in reply to Todd-pw]

Todd-Pw am I reading ur response correctly? That u went from f Vegetarianism to eating meat and it helped ur pd symptoms? I am addicted to sugar, so that is a tough one for me but I will try that. Eating meat for me is not an option since I am a vegetarian for animal welfare reasons

[Todd-pw in reply to Jmellano]

No I was not vegetarian but my diet was definitely more carb biased. Yes now carnivore based diet

[Ghmac in reply to Jmellano]

Sugar is a red flag! Try to find away to eliminate your sugar intake. Wish you well.

[Jmellano in reply to Ghmac]

I know sugar is a bad thing sad to say, it is one of the few things I enjoy in life

[Carpediadem]

Ataxi due foodintolerance!!! google!!!

[Jmellano in reply to Carpediadem]

Fascinating! Symptoms sound the same as pd. Although I don’t have vision issues, the rest of the symptoms apply. At one point I had tried a gluten free diet, along with being vegan. I didn’t have a lot of foods I could eat , so is stopped, plus I love heart bread. I will look into this again. Do u have gluten ataxia?

[Carpediadem in reply to Jmellano]

Hey! You have to follow a totally grainfree and dairy free diet!! Gluten an lactosfree diet is far enough!! Sometimes a small amount can destroy all efforts, like lactos in toothpaste or in pills…good luck, you’ll fix it!!

[Jmellano in reply to Carpediadem]

thanks!

[grower]

I dont seem to respond to many meds at all either. On the other hand I'm fortunate the PD is only slowly developing (10 years now) but like you I feel it's getting much worse while my wife and others don't think it is.

[Jmellano in reply to grower]

Grower, I have always believed that people must walk a mile in our shoes to really understand what we with PD deal with. I was a dancer and a cyclist prior to pd so I am very in tune with my body

[mhberman]

What red light tx did you use? The people who are using the neuradiant are reporting improvement in symptoms. Check out neuronic.Online

[Jmellano in reply to mhberman]

wellred.com.au/how-does-the.... I worked closely with dr. Hamilton when she was just starting to make the coronet available

[SAGoodman]

I'm sorry to hear you feel hopeless, we all get that feeling when our PD seems to be fighting us!I would encourage you to jump on our PD Zoom call on Thursday's at 8pm EST, where we share our experiences with each other, and it's a great bunch of people! Here's the link;

healthunlocked.com/redirect...

There is also one on Sunday, but not sure what time.

Hang in there, we can give this disease a fight it's never seen as long as we keep pushing!

[Jmellano in reply to SAGoodman]

Thank u for the invite. I know what I should do and I should attend more support group meetings so I can feel that I am not alone. Have been avoiding support groups as I don’t want to add any commitments to my list as it stresses me out

[SAGoodman in reply to Jmellano]

No commitment needed, attend as you can, very relaxed atmosphere!

[Jmellano in reply to SAGoodman]

Hank you sagoodman, I will keep it in mind

[Bennorca]

As of today, there is no clear-cut proof for PD - no datscan, no MRI, nothing, That’s why they generally use the vague term “parkinsonism”.

Energy flows where the attention goes. Therefore I try to see myself as healthy despite the symptoms.

[Jmellano in reply to Bennorca]

Thank u for ur response. Ironically, i am very healthy except for PD. , heart, lungs, blood levels are all excellent

[Delaraysbest]

I have questioned my diagnosis as well. My symptoms are mostly gait, balance and handwriting only. No constipation, sleep, tremors, or depress issues. I have heard of something called Vasular Parkinsonism. Not r rally sure if that matters pin terms of diagnosis. Iam meeting with a new neurogist at the end of October and will inquire.

[Jmellano in reply to Delaraysbest]

from what i understand strokes are the main cause of vascular pd. not sure if it is good news or bad news for ne

[Delaraysbest]

when I was originally diagnosed I had a brain scan that showed numerous mini strokes which i was never aware of! Never any mention of Vascular Parkinsonism. Not sure if trans Kent or the symptoms is any different. Medication does not seem to help as I do not experience on/off times and does not help with balance issues either.

[Jmellano in reply to Delaraysbest]

I sent a msg to my MDS about vascular pd and he feels strongly that is not my issue

[Rather]

Have you read about MultipleSystem Atrophy? You have some of the similarities, but it would be good to rulé out. P

[Jmellano in reply to Rather]

Yes, spoke to mds about that too, he says i don’t fit the majority of msa symptoms. I will be going for testing dysautonomia in begin of nov