New medication

My Consultant is semi retiring and I have had to see a different Consultant. He is very nice and gave me a thorough check up. He has put me on an extra tablet which is a slow release sinemet to take overnight. I already take 5 through the day.

Ive only been taking this for a week but I wake up with legs that feel like lead. I feel worse not better. Has this happened
to any one else?

Also in 3 weeks I have to double the strength of my Neupro patch which I am worried about.

Also I have an appointment to have an EMG which tests nerve and muscle function. Can anyone else tell me any more about this test please?

After being diagnosed 6/7 years ago I feel Im entering the next phase/level of my Parkinsons.

Any comments pls as Im getting really worried.

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Good morning Margs1 … I think I can be of help as we have a lot in common.

Firstly like you I am on Sinemet. I take 6 pills a day. 3 x 2 pills. 7am 12am 6pm. It seems to make a difference what time I take the pills. I too wake up with heavy legs.

I think your Neurologist suspects that you have Neuropathy & he is sending you for EMG tests. I went to Brighton hospital for my tests. It takes about 30 minutes. The man doing the test just got on with it & did not say this may be uncomfortable, which it was. But not too bad really. Following the test I was told I had DISTAL SENSORY AXONAL LARGE FIBRE NEUROPATHY. I take 2 Amitriptyline tablets at 7pm. These pills help me to sleep & sort out my Arthritis pain.

What happens during an EMG test?

Neurologists usually perform an EMG test right after a nerve conduction study. During the nerve conduction study, a provider will put electrodes (stickers) on the surface of your skin. They’ll then deliver a small electrical impulse that will feel like a shock to nerves and record the response. In most cases, they’ll test several different nerves.

The process can vary for an EMG, depending on the reason for the test and which muscles and nerves the provider is assessing. But in general, you can expect the following during an EMG test:

  • You’ll sit or lie down for the test.
  • A provider will locate the muscle(s) they want to test.
  • They’ll then insert a small needle with an electrode through your skin and into your muscle. These needles will stay in your muscles, and the duration of the examination for each muscle generally takes one to two minutes. You may feel slight discomfort or pain when they insert the needles.
  • The provider will ask you to relax and then use your muscles in certain ways, such as lifting or flexing one of your limbs, at certain times. A machine will measure and display the electrical activity of your working muscle. There will also be an audio (sound) component to the machine.
  • After the provider has recorded enough data from your muscle, they’ll remove the needle. They’ll repeat the same process in the next muscle until the test is concluded.

Any questions please ask.

Best wishes
Steve2

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The Neuropathy diagnosis takes about 4 weeks to come through.

I have mobility problems & I find I get worse mobility problems when I get up from sitting down. Also the further I walk the worse it gets. 200 yards is my maximum really. My legs get heavier & my lower back very uncomfortable.

It is a combination of Atypical Parkinson’s, Neuropathy & Arthritis in my knees & Spine.

Steve2

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I thought I sent a reply yesterday but cant see it here. Well Steve2 after reading your reply I googled the test and wish I hadn’t.

Surely we cant be that unlucky to have Parkinson’s AND Neuropathy? My EMG test is in two weeks time and Im now not looking forward to it at all.

I can still get about although its a struggle. So far have managed ti visit my daughter in Wigan by train (I live in Essex) by public transport although my next visit in June J think is going to be a challenge.

Thanks for explaining it all to me at least I know now what to expect.

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Hello Margs1 … Apparently up to 55% of people who have Parkinson’s also have Neuropathy. So the odds are not in our favour. Having done the test nothing has changed for me. Before the test I took Amitriptyline & I still take it now. I was told I had this form of Neuropathy & the test confirmed it. After the test I did have further blood tests to see if the Neuropathy could be treated but it couldn’t.

Yes the tests are uncomfortable but not too bad really. Bit like touching one of those electric wires that keep cows in a field.

Best wishes
Steve2

Hi Steve1 thanks for chatting with me is Amitriptyline a pain relief tablet?

I’ll let you know how I get on.

Have you got a Blue Badge? I have an assessment soon hopefully I’ll qualify.

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Hello Margs1 … Amitriptyline is the best drug I take. I take 2 tablets at 7pm every night. They help me sleep & they control my bad spine arthritis pain. I was on Ibuprofen which they don’t allow me to take as I’m 70. So yes Amitriptyline helps pain wise & has helped un-swell my feet & the stiffness in my leg muscles is better,

I applied for a blue badge about 4 months ago & got it about 8 weeks ago. What a difference having one has made & saved me a fortune in car parking charges.
Especially hospital car parking. I also get £72 a week attendance allowance which is not means tested.

Amitriptyline can be prescribed to people who have arthritis and other related conditions such as fibromyalgia and back pain. It can also be given if you have damage to the nerve endings in your limbs, known as peripheral neuropathy . Amitriptyline works by increasing the amount of serotonin your brain makes.

Steve2

Hi Steve1

I filled the form in on line beginning of January for my blue badge. Why does it take so long? I didnt realise you got free parking as well.

Do you manage to get out much?

I actually get the top rate AA and it sounds to me you should get the higher rate too.

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Hello Margs1 … My blue badge took about 12 weeks. They do say minimum 12 week delay for blue badges. I think I got lucky. A lot also depends on where you live. At the Conquest Hospital in Hastings, [where I go a lot] there is a car park for everyone. You go through the barrier & take a ticket. When you have seen whoever at the hospital you take the entry ticket & your blue badge to the hut by the exit barrier & you are given a free exit ticket. A few weeks ago I was at the hospital 3 days in a row & saved £19.20p.

You can also park free on double yellow lines or designated disabled parking bays.
Always keep a look out in private car parks as they may charge. You do pay £10 for the blue badge before you get it.

As to the attendance Allowance I answered all the questions honestly. For example .
“Do I use a walking aid?” Now I was told by the Neurological Physiotherapy examiner that I do need to use a walking aid. BUT I do not want to. So honest answer is that I don’t use a walking aid.

“Am I able to dress myself?” I do really struggle to put my socks on. But I live alone & have to manage don’t I ? So answer is Yes. Again cooking … difficult but I have to manage. As is cleaning the flat, which I don’t do.

So I only got enough points for the lower rate of AA.

I play indoor bowls about 4 times a week. If I did not play bowls I would never leave my 1 bed flat. I cannot walk for pleasure. After 100 yards I conk out & that’s no fun is it. No car would finish me off.

Good luck with your blue badge application.

Best wishes
Steve2