major worsening of condition meds not really helping. any advice/insight

[Todd-pw]

hi all,

looking for some insight into recent changes/worsening in my condition when worn off meds.

about two weeks ago i got run down through lack of sleep and seemerd to catch a bug had mild fever nothing to bad seemed to pass in a day or two but when meds are worn off since then my symptoms seem worse ten fold.

numbness in legs and lower spine

tingling in lower spine through to legs

major star hesitation when trying to walk

tingling in left hand side of face

nausea

exhasustion

migraine

all of which are eased once sinemet kicks in. only get about 40 mins relief from my sinemet 125mg 8 times a day. also nuero wants me to try apormorphine infusion.

my concern is, is this normal for things to go much worse all of a sudden

also hairs in legs shins fallen out and dry skin on shins knees elbows and hands this skin condition has been apartment for few months not new.

had a recent blood test done and copper levels where slightly low which is a symptom of wilsons disease but kidneys and liver fine so gp and nuero not worried by this.

had a positive test for lymes a few years ago privately but went to nhs infectious diseases they ran some tests not sure which exact ones and dismissed lymes told me not to take private Lyme test serious.

feel lost why medication isn't lasting any time even when fasting.

had spinal tap done fluids normal on spine

any help or advice greatly appreciated.

[park_bear]

I do not have an answer as to what happened, however, the amount of Sinemet you are taking is going to clobber your vitamin B6 level. See my writing about this here: healthunlocked.com/parkinso...

and then we can talk about this further.

Vitamin B12 deficiency can cause all manner of neurological symptoms. Have the levels of these vitamins checked on your next blood work. You can register is low-normal on B12 and still be deficient.

If you are not taking high-dose thiamine that is worthy of consideration: highdosethiamine.org/

[LAJ12345]

Also consider trying Hardy’s daily essential nutrients as it has a wide range of compounds including all the essential vitamins and minerals. Try calling their free toll number and talk to a product specialist about your symptoms.

hardynutritionals.com/produ...

[Hikoi]

Have you been tested for Covid?

[Todd-pw in reply to Hikoi]

No will ask gp today thank you, thought Covind was cough flu like symptoms

[frankaspergilus]

Hi Todd.

Your story echoes mine very closely. Pretty much every symptom you have I have had for years, including losing hair on shins and dry skin in identical places.

I've been told it could be PD, Lyme but the longer it all goes on, the more I realise that some part of this is rhumatalogical.

There are many forms of arthritis. Some of which may be causing your numbness and tingling due to damage to nerves in your spine and neck for example.

Cervical arthritis will give you headaches. Most forms of arthritis will wipe you out physically especially after any form of exercise and it may not happen straight away but a day or two later. It can be confusing to link the symptoms to the cause when this happens.

I've had MRI's, x rays and a scintigraphy which all show arthritis and inflammation in the major joints and in some smaller joints.

The symptoms work their way through you over many years and can feel like many other illnesses.

I may have other problems too such as PD or Lyme but for sure musculoskeletal problems are a bit part of my symptoms.

I would talk to your doctor and ask him/her to consider checking thoroughly the possibility that you may have a rhumatalogical problem too.

Treatment for those would be very different than for PD and may be why you don't feel better when you expect to be from your PD meds.

[Todd-pw in reply to frankaspergilus]

Wow this is mirror of my condition, spinal musculoskeletal problems but dr Nuerology not interested just focus on PD. Thank you so much for your insight will be contacting gp today

[Hikoi in reply to Todd-pw]

Parkinsons is a muscular problem isnt it?? It is concerned with movement. We can have an arthritic condition as well but it is made worse by PD. How long do you have between med doses?

[Todd-pw in reply to Hikoi]

hi Hikoi

usualy every 2 hrs been like this since the beginning meds wear off 2hrs max

[Hikoi in reply to Todd-pw]

Bummer

[Todd-pw in reply to Hikoi]

yes i agree but specialist only seems focused on his field. will be asking GP to refder me to musculoskeletal and rhuemotolgy

[Hikoi in reply to Todd-pw]

Specialist only focusses on his field - Well i guess he is called a specialist for a reason!

You have been diagnosed 4 years now right? You are reaching the more complex stage of PD. Are you still on pramipexole and Azilect? What meds do you take regularly?

[frankaspergilus in reply to Hikoi]

Yes, Hikoi, muscular problems are a big part of PD of course. That's why I've been struggling to get a diagnosis for many years because neurologists don't often compare notes with rhumatalogists and visa versa. That's been my experience anyway.

The question is, which illness is responsible for which symptom. It's really important to get a good diagnosis because prescribing medication for one illness only, when a different one is responsible for some of the symptoms, is going to be completely useless if not counterproductive or dangerous.

In this position we just have to keep pushing doctors to consider other, additional possibilities too and not just keep taking meds without question.

I've noticed that pre a PD diagnosis most doctors will tell you odd symptoms are definitely not PD, and post diagnosis the same symptoms and every other new symptom they will tell is a natural part of PD. Got to tell them you don't think so if you have any doubts at all and get them to keep investigating.

[Hikoi in reply to frankaspergilus]

Well Frank, In my country patient notes are on line or if not the GP coordinates care and refers the patient to specialists and gets reports back so although their are faults it is a coordinated system. I find the GPs in general have only a broad understanding of PD because they are generalist doctors. I take your point about getting the right treatment but my experience is different, not everything is put down to PD. I note that Todd gets relief from symptoms when he takes sinemet.

[Todd-pw]

I actually have my kids to stand on my back at night

[frankaspergilus in reply to Todd-pw]

That sounds like you could well have a back problem too. Perhaps see a good physio and ask them what they think or which scans might be useful.

[aspergerian]

As frankaspergilus mentioned, your symptoms suggest the possibility you have Lyme disease, along with PD.

Lyme & Tick-Borne Disease Misdiagnosis | IGeneX Tick Talk.

Called the “great imitator,” Lyme disease can present a variety of symptoms that mimic a wide range of illnesses, including chronic fatigue syndrome, fibromyalgia, ALS, Alzheimer's disease, depression, insomnia, and autoimmune disorders such as RA and Multiple Sclerosis (MS).

igenex.com/tick-talk/whats-...

[JeffroC]

Have you discussed DBS surgery with your DR? If the meds help for a bit then wear off, you will likely be a great candidate. I just had it done and WOW is all i can say!! It is awesome!

[Todd-pw in reply to JeffroC]

yes but wants to try apomorphine first. so you have had success with DBS thats good to hear

[Astra7 in reply to JeffroC]

That’s encouraging!

Can you elaborate on how it has helped you . Tnx

[JeffroC in reply to Astra7]

healthunlocked.com/parkinso...

[OREOLU]

Hi Todd-pw, I had some of your symptoms suddenly in Dec last year severe migraine and nausea,and fever,severe fatigue,and wet cough in April,followed by early wearing off of sinemet. I am thinking some people get all these symptoms,for progression of disease.I am waiting to switch my med to Rytary,but for the main time I was advised on this thread to dose up by half sinemet .This has helped the wearing off to some extent. The bug lasted for three weeks,no covid.Talk to your Doctor and see what he says,about adjusting your dose or meds

[20fatcats]

Constipation stops the meds getting dispersed .Can have a huge effect Dont know if this is a problem but just mentioning.

[OREOLU in reply to 20fatcats]

Yes,I have experienced this, I agree with 20fatcats.

[aspergerian]

Another possibility:

She Tested Negative for Lyme Disease. So What Was Wrong?

Excerpt:

When untreated, B. miyamotoi can cause recurrent episodes of illness because of an unusual ability to fool the immune system by changing its outer layer. Once it has eluded our disease-fighting antibodies by the equivalent of changing clothes, it can reproduce again and produce a new round of fever, headache, fatigue and body pain that characterize this as well as most other tick-borne infections.

nyti.ms/32lyK78