I started with just slight tremor in my left hand and a foot that occasionally. felt numb. Then my whole arm started trembling , now it extends under the arm pit and around the back .Then the severe pain started in my hand / arm and the tremor has become unbearable to the point where I am unable to sleep without a sleeping pill .Even at that I still wake lots with pain and throbbing, increased tremor. I have to keep icepacks and hot packs with a microwave in my bedroom because I am up half of all night trying to calm things down.Everything feels like live nerves and I cannot find any comfortable spot to lay down. Also when I wake most times I go into what feels like sharp electric shock pain and buzzing in my whole body but mostly in affected left side .It takes a long time to settle down and may involve a shower starting with warm then going to cold to try and calm the nervous system. The latest addition is my left leg and foot going severely numb and stiff, also trembling..even slightly on the other foot. I am suffering like hell and I can't get any neurologist to pay attention except for blaming it on anxiety( which I do have understandably) or just not believing me as it is so rare. It is impossible for me to have a life .... even exercise ....as a mere walk with my arm hanging down makes it throb with pain. I am terrified because my husband is losing his patience and leaving me alone. He wants me to take the Clonazepam for anxiety as prescribed by one Neuro who saw me for 10 minutes . I have tried it but it does nothing for my symptoms that is causing the anxiety and I hate taking it as I already feel terrified taking the sleeping pill. I shouldn't be taking both...preferably neither of them but I am in desperate shape . To top it off I am now severely constipated and have no appetite. I am taking 25 / 100 C/L 4 times a day. I sometimes add 1/2 pill . I wonder sometimes if the pills are actually making me worse . I have gone downhill fast since starting.I read about everyone still working and going to the gym std but it's impossible for me. I spend my time trying to feel better but with no progress. Even if I went to the hospital I don't see what they can do for me and I am needing so much to go with me ..the maintenance is unsustainable even at home let alone in a hospital setting.
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Butterflygrandma
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it does not sound like PD to me. I suggest you look for another doctor even if you have to pay for it privately. You could try to wean yourself off of the c/l and see how you feel. You are right about not taking the clonazepam and sleeping pills unless your doctor is very vigilant. Have you had a cervical MRI? To me it sounds like therE is something functionally wrong that is happening too fast to be PD. Good luck.
Well I have no choice but to take the ClonAzepam and sleeping pills sadly because I would not get any sleep whatsoever without a sedative. I hate it but I am barely surviving as it is.
Try 600mg of magnesium citrate daily for constipation. Take it all at once in the evening. Give it a few days and if it works, then break it up into 200mg 3x a day. If you are seriously backed by then try a dulcolax. It will take care of things pretty quickly so make sure you can be home. The mag citrate has been great for me. If I get too regular I either skip a day or only take one or two capsules in a day. With the 1 mg clonazepam I cut it into quarters and take 1-3 quarters before bed over 15-30 minutes. It seems to help but does not make me groggy. I would really consider weaning off the c/l. If it’s not PD, that med could make it worse. Please talk to your doctor, even if he/she is not terribly responsive; you need to go on record with this.
I take Mucana purines which is natural levadopa. I get that online from piping rock and I take 2 350mg which is equivalent to taking 1 x 100/25 PD med.
keep doing yr own research as I have seen several neurologists and all they want to do is increase pd meds which made me worse.
Terrible that your disease develops so quickly. It doesn't seem normal to me. Because your neurologist does not seem to see the seriousness, you will have to figure out for yourself why your fairly high C/L medication is not helping enough. My neurologist solved the problem by constantly doubling the doses. I am going to see him again on Thursday after a year and can inform him that I am on 10% of my Sinemet medication. Wondering me what his reaction is....
With me it was partly due to a B6 deficiency ( and later an excess of B6). That is now balanced, which you can only tell by regular testing, in addition to the other B vitamins.
At the Parkinson's Weekend in the Netherlands, Bas Bloem once again explicitly let us know that a constipation problem for PD is particularly serious and should be priority number 1 for your C/L medication to work properly!
One last advice, maybe find another neurologist…. Good luck! 🍀
It seems it would be of great value if our medical professionals would order annual testing for vitamin, mineral, gut biome, amino-acids, etc. deficiencies, as that seems to correlate to neurological degradation. And they should make it part of one's preventative care protocol starting in one's 30's or 40's.
Like my regular item that PD is associated with a higher risk on the occurrence of a neuropathy. The duration and the dose of levodopa is related to the occurrence of a peripheral neuropathy. In long-term oral levodopa treatment 19-58% of the Parkinson’s disease patients develop a peripheral neuropathy. Levo-dopa-induced peripheral neuropathy is associated with dysfunctional methionine metabolism, which is characterised by an increased methylmalonic acid, increased homocysteine and vitamin B6, folate acid (vitamin B11) and vitamin B12 deficiencies. Only through a simple test can you save so many costs in healthcare not to talk about preventing a lot of pain and suffering. But well vitamins...
I take vitamin b12 sublingual , also benfotamine. I read that you shouldn't take much b6 if you are on levodopa. I am pretty sure I am sensitive to it as I seem to get more pain when I take a b complex with even the slightest amount in it.
Again, 'To top it off I am now severely constipated and have no appetite.' may be a major cause of your problem with your C/L medication. I wouldn't wait to fix this as soon as possible!
There is already a lot of information on HU, but for a proper digestion:
Don't skip breakfast. Starting the day with a (fiber-rich) breakfast, for example, muesli, seeds, fruit, nuts, cottage cheese, immediately stimulates the functioning of your intestines. Then exercises or a good walk.
Choose variety in your fruit and vegetables. This way you stimulate the functioning of the good intestinal bacteria.
Don't eat too fast and chew on your food long enough. This is good for your digestion and also helps against bloating in the abdomen.
if it is not Parkinson the l dopa will not help. Does the l dopa help some symptoms? Do you have dystonia, stiffness, slow movements. You only mentioned tremor.
Yes I have stiffness and rigidity in hand , left knee , and spasm in arm and around / under shoulder/ arm pit area.My movements are slow just recently or at certain times of the day.
Try Magnesium L-threonate to help the constipation. Look into high dose thiamine as well. You could try Rytary instead of C/L. Perhaps, you have MS and not PD - not sure? It sounds like you need a new neurologist!
It could be you are over medicated and or you are depleted in micronutrients. Test for folate, B12, and iron.Try slowly reducing the amount of each levodopa dose. If you are on capsules try and change to the tablets that can be cut. There are 50/12.5 madopar ones too if the 100/25 are too strong.. It's better to take less each dose closer together as you won't have such extremes.
My husband had constipation from too much madopar. Also bad reaction to sleeping tablet. Clonazepam at a low dose works well for him. He takes 2 X 1/4 during the day and 1/2 at night for sleep.
Don't be scared of Clonazepam. Just try it but start at 1/4 or 1/2 dose for a few weeks and see if it is enough. It builds up gradually to a steady level in your blood then and should keep you calm. The anxiety can be caused by too much levodopa and worry about getting worse. Get your anxiety under control and everything else may improve.
Two natural calming methods are humming and the double breath. Take a breath in then quickly take another sharp deep breath in without breathing out first. Then exhale.
One other possibility if everything is one sided is that you have shingles. That feels like buzzing and tingling and pain. I had a mild case a few years ago and eventually doctor found one spot only! And gave me antiviral that fixed it. Shingles is always in nerve quadrants so you would feel it on one side only.
While you are waiting on neurology you might discuss it with your primary care doctor also. There are a few primary care doctors that can really be helpful when a specialist get tunnel vision. If you have not had MRI of head and neck that might be helpful. When things are atypical you really need to look for an alternative diagnosis.
I feel so bad for you and can relate to you. I am totally against sleeping pills and clonazepam but if nothing helps we have to take it. Even doctors here in Canada do not give it to you easily but my psychiatrist tried everything to make me sleep but nothing worked and so he said take as much as you want if it is helping you, everyone needs sleep. I take compassion oil THC and it helps me sleep somewhat.. My prayers for you.
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