Has anyone else had a bully neurologist or these symptoms?

[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.

[luvdogz55]

i'm with you,and i totally agree.read my post if you'd like,i'm on your side,and i know exactly what you mean.

[supermum_ms]

hmmmmm I kind of am morbidly funny, lol if you check out my posts and you'll get the idea that i am a fully paid up member of the optimist club, typically find humour in just about everything but i'm also a realist, who say's what i mean and mean what i say.......

I do hear what your saying but regardless of the facts of yesterday, today your mindset is feeding on negativity, your world view is continuing to be clouded by the negative acts of 'others'. No one has any control over someone else, they choose how they act, what you have within your controls are your choices, your behaviours, and you always get the choice in how you let other peoples behaviour effect you. You might not believe it in this moment, but you do get to write the next chapter in your life story, do nothing and you'll relive yesterday, do something and you could change your tomorrows.......

I hope you choose to fight for what you want and believe you deserve and not give anyone else the power to take away your self worth, cause honestly no one can unless you give it to them........

food for thought...............JJ

ps do you wakeboard down the Murray?

[BillyBonza]

Hi Smms,

thanks for the comments, I appreciate your effort try and steer me positively. Unfortunately I think I'm past 'Think what you want/need and go make it happen'. I wasn't very open to 'you can be whatever you put you're mind to' when I was growing up and I'm still not.

You are right I have always been an idealist. It has confused me my whole life why other people live side by side with me in the same environment yet do not try and maximise and utilise the resources around them to the ideal level and make the environment around them the ideal version of what it could be. Ideals are just benchmarks of civilized living that we have already achieved by don't exercise anyway for no proper reason other than the obvious, greed and things like that.

Yes I've been let down by people, these people in this order since I was diagnosed who I no longer have any communications with at all:

- Ex-fiance, (this story is the most unbelievable twisted story from hell frankly I can't even begin, the only true sociopath I've ever known or heard of in real life, no exaggeration);
- My Dad and my brother and the entirety of that side of my family (because I don't seem like I'm sick so there's nothing wrong with me);
- My best friend of 17 years actually tried to defraud me out of 10s of thousands of dollars since I've had MS;
- My Mum too in a completely different way which is probably just as hurtful  to be honest but I just cant stay angry at my mum so I forgive her;
- Every doctor literally that I have been to see to since being diagnosed from eye specialists to GPs to Neurologists, they all su*&.
- I'm sure anyone else I made the offer to would probably pick it up and run with it that seems to be the fashion.

You think I'm being morbidly funny? I'm dimming it down about 2000 shades for you, believe me.

I have ADD too since forever. But besides my happy little disorder and my life destroying disease I literally HAVE NOTHING, and no one, anymore.

It was the fiance that killed me officially though. Fu^&%%$ B*&#$

[supermum_ms]

Hi fellow Ozzie and welcome to our little MS community.

Your definitely not alone with your MS experiences but i will have to respectfully disagree with your views on society's safety net.........

"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.".

.......In my world this idealisation has never existed! The system we have in Australia, believe it or not, is a lot better than many others but still it's never been guaranteed to be more than the provider of basic needs, if you want or need something more, then like everything, its totally up to you to provide you and yours with what you believe is needed. A lot of those needs will be available but first you have to know who to ask...

I've been involved with children with disabilities in various ways for most of my life, one thing i've learned is that disability can bring out the best and the worst in people. When you are the parent of a disabled child, you soon learn that every system you come in contact with, is mass outcome based and the individual outcome base is often reliant on the sheer determination of that child's parent(s) and supporters to provide what is needed.

I don't know what has set this train of thought in motion but to me it sounds like you've 'possibly' become isolated and or feeling abandoned by people you expected to be supporters. The why of it doesn't matter as much as acknowledging what you need and focusing on changing that one thing you have control over,  hunt for what you want/need and make it happen!

You don't say which state your from, but there are various organisation that are specifically there to help pwMS in each state. This site has direct links into everything that is available to you in Australia, some states have weekly friendship groups for similar ages. If you don't see what your needing, please contact them or your states branch and ask.....  
http://www.msaustralia.org.au/support-and-services

Cheers.........JJ

ps the site *** out swear words, creative letter arrangement helps su_cks :D  

[BillyBonza]

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.