Parkinson's and ME

Hi Carla,

I get hand tremors some of the time and a friend of mine, also with cfs/me, gets them even worse. Has been told not Parkinson's. MS is always a worry too but, we get the exhaustion/fatigue other conditions don't.

B

Thank you for this, have not had this symptom before a couple of months ago, and was pretty scary, the 1st time it only lasted for around 5 minutes, but the second time around 30min 

Some of the symptoms are quite scary. I find if i dont do as much, i dont get the tremor so much. Still worth checking with doctor if it bothers you

B

Thanks for your reply Carla, it definitely makes one wonder.

I've only had the hand tremor issues a couple of times and I don't appear to be as fatigued as many here are. Heck, if fatigue was my biggest concern, I'd be in good shape — all things considered.

My next neuro appt. is on Aug 15, I will surely enquire about it again.

Hi Dono,

What is the main thing that concerns you symptoms wise? My scariest time was when It took me 20 minutes to eat half a sandwich. A friend made It for me and I struggled to raise it a few inches. Everything was shaking and my legs kept jumping about. I felt so ill and needed help to get up from my bed. I Islept all day. Some people are like that all the time, I know. That's my biggest worry, getting so bad I need care.

Funnily I've had mine 3 1/2 years too

B

Hey Beverly,

I share your concern regarding care, however my wife has been pretty awesome with whatever I need. Unfortunately, I am always trying to help her as she can become overwhelmed. We have a massigve garden that took us 10 years to finish — well it's still not quite finished. ;-) The pool needs cleaning and care and that has always been my job. And because I wasn't diagnosed correctly, I overdid everything, right up until I learned about ME/CFS. So I know I have worsened my situation — I figured if I could still physically excersise, I should. Wrong!

My worst sypmtoms are stimulus sensitive (light, sound and touch) myoclonus,  which exacerbates the myoclonus —  constant, uncontrollabe jerking (seizures) that accompany it. Some doctors believe

myoclonus is a stress-related illness, what stress means in this context is ‘the non-specific response of the body to any demand.’ So, while healthy people cope with the demands which assault their senses, responding appropriately to what is relevant while ignoring what is not, I seem to have lost the ability to manage the sensory input of my environment. I'm actually housebound because of the stimulus sensitivity and orthostatic stress. Early on in this process, I used to tell my wife I felt like I was being poisoned by the sun.

Then there's the pressure and pain at the base of my skull and neck; the difficulty I have swallowing; the fact that my blood pressure jumps to 195+/125+ while standing or walking, yet drops back to normal when sititing or laying down; shortness of breath, chest pressure/pains (which always concern me);  vertigo and naseua which are usually a daily occurance; pain in my muscles that feel like they are being torn out; headaches that feel like someone has shoved a screwdrived into my head for a few seconds. I also have word-finding difficulty, especially if there are a few people talking to me at the same time. I have terrible short-term memory and vision trouble.

Now, don't get me wrong, My muscles tend to feel like I've just played back-to-back games (something I haven't done since my 20's) at times, It just isn't my biggest issue. I just don't seem to be as tired or fatigued as others. That has always been explained to me as one of the major differnces between ME and CFS. Who's to say?! In fact, I can only remember having to take a nap once in the last 3 1/2 years because I was just so wiped out.

These are just the major, daily constant symptoms and reminders that ME isn't a psychological disorder!

Hey, re the blood pressure rising and falling like that, anyone mentioned POTS ? Other than that we share alot of things, my pain is intermittent, my chest pain is much less and the dizziness is just awful some days. My memory is terrible, I slur sometimes when I speak, fall to one side and look drunk-hurrah! I'm homebound alot of the time but not all. Light, sound, touch can all be too much and it's hard getting people to understand that. I can't bear music most of the yime presently and have tinnitus in one ear that it was louder than the busy shopping centre. I use ear plugs sometimes and sunglasses to look at the computer : ) I too struggle for words. I hear what you are saying re fatigue not being your major concern. I rest more at present as I have to. My friend, is more like you, less shattered but more pain. They have the breathlessness and chest pain more and different, love the sun! But, struggle with noise.....

I'm glad your wife is supportive as that can be half the battle. Its no fun this condition at all. Did you have a trigger to all this?

B

If I did, I'm not sure what is was. There have been studies in the last couple of years that appear to affirm that ME is most likely communicable. I used to travel all over the country for my work, so I could have come into contact with some virus which triggered it. I can tell you, my wife and I first noticed my left arm jerking on Oct. 17, 2012 and three days later I was having my first MRI and EEG at the VA hospital in Nashville. I am waiting on my very first pair of glasses (should have them this week) because my eyes have deteriorated so quickly. They will be light rose in color so as to block the annoying light indoors. That should be a huge help! They are also making me computer specific glasses that have a special coating to block the UV bounce computers put off. Really looking forward — as is my 'eye guy' — to see if galsses might help lessen any of my sypmtoms.

Hi again,

I Mentioned POTS only re the blood pressure on standing, is one of the symptoms. Have spoken to a couple of people with it on here. They have the cfs/me symptoms as well. The glasses sounds a good move. Never thought I could get some special glasses to help-doh!

My symptoms started on the 13th October 2012. I wasn't to know what It was until over 18 months later. And, like you, I carried on trying to exercise etc. Most people seem to get a different diagnosis first it seems.

Beverley

My GP (who is just a resident at Vanderbilt) is the one who took my BP back in April. It was the first time I had met with her. Ironically, it was also the last as she was just finishing up her residency. She took it as a matter of meeting with a new patient just after I had walked into her office. I have a monitor at home and after returning to my dark office and having been seated for about 20 minutes, I took my pulse again and it was back down to 123 over 71. I'll ask about POT's as well. My daughter-in-law has been diagnosed with that in the alst year. Orthostatic stress is also an issue as there is a visible and considerable increase in my symtoms while standing than sitting or laying down.

Technically, I still haven't been diagnosed with ME, but I haven't been misdiagnosed either, I do have myoclonus, they just can't find the source. It was when my neurologist at the VA (Veterans Administration — if you aren't familiar with the acronym) said my MRI's were clean that I started to research myoclonus with a clean MRI. All of the info I have gathered from very knowledgeable sources reflect my symptoms to a T. Which is why I am out in San Diego to visit with my dad's neurologist and get that much-valued second opinion. I'm armed with all the right information and questions this time. ;-)

I wish we could edit text in this forum, especially for those of us who have trouble comprehening our words. It takes a couple re-reads to make coorections that make sense.

 

Speaking of hand tremors, have you or anyone esle here had and issue with waking up and having your hands feel like they are asleep?

 

About 3-4 times a week, I wake up and my arms will be tingling from about my shoulders down to the tips of my fingers. My hands feel like they are all curled up and frozen. It's not painful, and I thought perhaps I had slept wrong and had pinched a nerve in my neck, but that's not the case.  I start to gain flexibility in both hands in about 5-10 minutes, howeevr the tingling in the arms remains constant on a daily basis.