Muscle Jerks

[Sidesteps]

I have a couple questions.

I have had muscle twitches for nearly a year now. It was my presenting symptom. It started out as the full body jerk you get when you fall asleep, except that it progressed to happening every night and I was wide awake.

Those stayed and then I started having the twitches (little muscle twitches like you eyes twitch) but it was primarily ocurring on the left side of my body - my bicep, my quad, my calf, the bottom of my foot. Those progressed and at my worst they were all over my body... I felt them EVERYWHERE... yes, even in very private areas. They still primarily ocurr on the left side of my body but I'll sometimes get them on the right as well.

The part that is concerning to this is they haven't gone away - they get better for a bit, then get worse when I'm not feeling well or near my cycle.

I also get what I would refer to as random tics. It's not a tic more like a muscle jerk.  I can feel the sensation of energy starting and then my arm or left will move. It is almost always my right arm and my left leg - sometimes my right foot.

I am also really concerned about a couple new symptoms:

My muscles ache lately (a deep ache that seems to radiate but doesn't specifically start or end anywhere) these are usually in my bicep or leg and sometimes my forarm. I will rub it but it keeps coming back.  Is that spasticity?

The most worrisome is a sensation that my fingers and hands feel tight (I am stretching them several times a day.) I am really concerned about the sensation that a few of my fingers feel like they are trying to lock up, cramping (?), or become super stiff they don't want to move normal. It's worse in my left hand where I have left arm/hand tremors.

I am normally extremely flexible - one of the people that the doctor's are shocked at my flexibility (I can bend my thumb all the way to my wrist - so this is not normal for me. I'm a bit worried this isn't an MS thing. I also can bend over and touch my toes without working at stretching.) Does anyone have any idea what this could be?

Has anyone else had these?

[moneyfreegaye]

if you are hypermobile in your joints like the thumbs and so on then that could be the cause of muscle spasms, which cause the knots and then pain in the muscles. sitting for long periods is the worst. typing makes me hurt and exerice like pilates or simple stretching helps, a little often. wwe are designed to move. we need our muscles to support our bones and joints. i found out through immobility how imporant this is. yes alcohol, white flour, dehydration and heat or cold extremes ....so i am trying my way as teh doctors think i am mad.

[BillyBonza]

Sorry I forgot what else you said. Yes I did find another Neuro but I couldn't get to see him for 7 months in between so the worst thing that old Neuro did was basically prevent me from being able to be on any medication for 7-9 months after I was diagnosed because I wasn't going to submit and take Gilenya and then I had to wait to see the next guy.

In my MS journey so far you know what I've realised? This society we all live in, whether we agreed to be bound by it and it's rules or not, its just a name for an agreement, a very traditional type agreement. Simply, we all agree to live together side by side as human beings, for the benefit of all people in that society, to be able to live comfortably, without fear, to be happy, to make their own contribution back into the group for the benefit of all and to receive the same from each other person. We agree to this in principal because our 'intelligence' tells us the alternative is hard and actually moving backwards, it's the most beneficial structure for us as individuals and for humanity, its civilized and encourages growth and development and evolution even. You get what I mean. The only reason millions aren't out there robbing grandmothers at ATMs, doing armed hold ups and murder and blah and blah is because of this society or social agreement. Because the benefit and reward offered by it is far far greater than total freedom through anarchy? In this system you can also be assured that even if you get unlucky and sick or hurt or whatever that you will be ok. No man/woman gets left behind. The system accommodates for these circumstances and that's the whole idea, its your insurance, sacrifice the better part of your life towards the group and when and if your time comes that you are reliant on the group you are covered, no question. Well going back to the question at the start of this paragraph, what I realised is all of this I've said about society, its ********. It's a total lie, a scam and you'll only find out when its too late. I realised I was/am the only person who fell for this ****. No one is there when you really need it, not a doctor, not a policewanker, not a politician, not your neighbour, not your 'friends' and rarely even your family. You make the sacrifice up front on good faith and then, when you need to make a claim on your society policy what do you find? Just a scam, thanks for your contribution, but now, sick or whatever, you're a faker and you're on your own. This reality pisses me off like I can't even begin to describe. Probably because it makes me feel naive and stupid for accepting such terms against my better instinct.

[BillyBonza]

Hi,

thanks for your messages and the information. I am absolutely going to look into that further. That Neuro was the biggest try-hard bully I have ever come across. I say try-hard because all I wanted to do was slap him across the face and take his lunch money and say "that's how you bully someone nerdboy, see you tomorrow." He said other things as well, such as "If I were you the I would be on Gilenya" and when I was asking about the variety of meds and some details he said something to the effect that "If you want to look at the other meds then I'll have to refer you because I am only concentrating on Gilenya." He was seeking my authority to put all my data onto an international database of Gilenya patients, etc, etc.

Recently I went to see some professor from Germany or something like that come to speak about MS history and treatments as it is like the 30 year anniversary for MS (?) anyway, I picked him as a company man early into his speech too he was very patronizing and quick to move past some meds, but when it came to Gilenya he mentioned something about the benchmark of having prescribed 100,000 patients with Gilenya worldwide like it was some personal victory. That's when it all clicked. Not enough trials time and too many adverse reactions and so lets substantiate it another way and force it down as many throats as we can, get the numbers and then no questions.

[immisceo]

I also meant to encourage you to copy what you wrote here and start a new thread with it. We're writing on one that it years old and a lot of people may skim over it.

[immisceo]

Hi there. You'll probably get more of a response once the work-week starts. It's pretty quiet around here on the weekend.

I'd find another neuro ASAP. That's NOT the way the world works. It's very serious. It can and does result in lost licenses, huge fines, and legal action. The company producing Gilenya is facing serious charges in this area. http://www.reuters.com/article/2014/05/29/us-novartis-lawsuit-idUSKBN0E924Y20140529 He should be concerned about you reporting his comments. I certainly would.

There is precedent for this in the area of MS drugs as well. http://www.bloomberg.com/news/2011-05-04/merck-kgaa-units-pay-44-million-to-settle-false-claims-suit-1-.html

[BillyBonza]

I don't know if anyone cares or will find this useful, I guess I don't care....

Diagnosed 18 months ago, optic neuritis right eye (I think it was the right?), totally blind in that eye for 8-10 weeks. I would guess that I actually had MS from about 2 years prior to this just in hindsight I had various symptoms which I guess I was able to ignore.

I have a terrible tremmor in my hand, both hands, which I have had since I was about 15 (now 33) and it's gotten worse and worse to the point where sometimes i cant help but spill, or drop or whatever it is im doing. My hads are also 50% numb and I have complete lock up spasms in my hands everyday.

My back feels totally numb like if you were to press your finger tip into my back I can't tell where you are touching its like displaced and weak sensation. Also feet, hands and face.

Burning sensation occurs daily but mainly across my whole back and knees! My knees they hurt especially when I get tired and run down and need rest (all the time).

Cognitive issues, what's my name again? No seriously where did I put the keys? Stop making my life more difficult where is my wallet? Who are you again??? And so on.

I wake up at 9am, must nap again by 11.30, exhausted. 2.30 - 6.00 then nap 6 - 9 then usually 9pm - 4am then exhausted.  I constantly move around the house falling asleep from room to room.

Now muscle twitches and restless sleep but in a really queer way. Habe you ever been prescribed Endone? It's a morphine style painkiller in a tablet. Anyway when I broke my hand once they gave me Endone at the hospital after the operation. The way Endone kills the pain is to really just distract you, take your mind off it. I makes you feel like you have fallen asleep and so you're in this dream like state but you're still half conscious too and so it's not real sleep its just on the edge of the real world and dream world. Point is I can't seem to get proper REM sleep now without marijuana. Otherwise this middle state is as best I can get to and when it s like that I have these constant twitches that literally jerk my whole body so much I wake up or accidentally hit or kick things around me its just like a lighting bolt his me and I gasp and jerk awake time after time after time after time. It feels like I'm falling which leads to this jerking awake. Also while trying to sleep like that I talk in my sleep so much and I also move my hands like acting out the 'dream'. A lot of the time I wake myself up by talking that's how I know I do it. Then the other day it happened while I was awake? Uh Oh.

I have had many other symptoms, pretty much all of them I think. You want to hear a sick joke? There is one symptom I have not had. I have a king kong sized libido okay, unparalleled, in all of human history I'd bet on. That's great I hear you say good for you. Well while the rest of my brain and therefore body is literally failing and falling apart around me what do you think would be the one thing I wouldn't suffer from. Yes no dysfunction for me. Now I can just want it and have worse and worse chance of getting it. I have to laugh, it's cruel but fits the theme.

I have had 3 MRI's now with another one coming up in a month each one has been worse than the last. Progression on each one. I've been taking Tecfidera, feels like its done less than nothing, useless I'm suggesting, for me anyway don't be discouraged I picked that one for a reason, because it seemed to me to be the one that is least disgraceful. All MS meds are sad sad excuses for medications after 30 years and no one will even tell you how much money in research. I think all the meds at this time are worse than MS itself.

Neurologists are **********. My first one tried to force me to take Gilenya and I mean almost literally forced. He would say "if you think you know better than me then fine" and "if you won't take Gilenya then I will have to refer you on because I can't help you". I called him out one day and said he was getting kickbacks for putting people on Gilenya. He said "That's the way the world works" end quote.