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Old 11-18-2009, 08:40 AM   #1
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larry043 HB User
Getting freaked out and no answers. please help !

Well, about two years ago I had an episode that was scary and similar to a stroke. I saw a neuro and he wanted me to have an MRI but our ins. wouldn't cover. I have been out of work due to a back injury and related disability and we simply cannot afford it.
We now have different insurance. For the past few months I have been experiencing cramps in my legs so bad that they sometimes leave bruising ( mostly in my calves) The cramps are so bad I cannot walk. They happen all times of the day but mostly at night and when i reposition. My legs are extremely weak and i have fallen and also fallen into people which is very embarrassing. my vision is cloudy and worse than ever and i have been having episodes where my voice will go. I get very hoarse and difficult to talk. my mind doesnt seem to be right as I cannot go and complete a task without being very quickly distracted. recently i have done some wierd things as well. to pick up my kids from school i have found myself several miles from where i need to be. I don't notice i have missed my turn and just keep driving. i trip a lot over my own feet and over things multiple times like an idiot. pick everyting up and trip over it again. I am losing my mind or something. I used to be very athletic and never had a problem with my legs until after the back surgery. Other symptoms I am having are :numbness in my legs, toes and hands, cramping in my hands as well as legs, dizzy and lightheaded with occasional white spots, it seems to happen in the morning only but as i look down and to the right i feel like i am being electrocuted feeling it through my neck and into my right outer thigh. very stiff neck and bad headaches, slurring and tripping over what i try to say. I finally give up.
very tired, and as i normally cook dinner i have been calling my wife to pick something up. i do not have the mind to think of what to make and am too tired to do it safely. my legs shake as i try to climb stairs or even to walk off a curb. i could urinate every two minutes in some cases. i go and need to go again right away after i get in my truck or get outside. it is very hard to hold and sometimes not totally successful.
SO, the doc. ( neuro) mentioned he thought i had MS two years ago which i thought was totally off the wall. now i find myself agreeing with him after reading up on the symptoms and the llatest symptoms i am having which confuse me. with the back issues ( a two level fusion l4,l5,s1 ) and severe IBS and severe GERD it is hard to understand where things come from, even for the docs. so recently my family doc. was ready to again blame things on my back until i reminded him that i didn;t get the mri done 2 yrs. ago. so, he ordered another one which i had a wk and a half ago. normal results on a 1.5 tesla which people have been telling me probably wouldn't pick up ms anyway. i wouldn't know but that is what they are telling me. then the doc. wanted a lower extremity emg which i had one in 2007 both legs result was normal. one in 2008 left leg normal but back showed nerve damage. so finally they cancelled yet another emg and i am waitong to see what they want me to do next. this all seems like a vicious circle of nothingness to me. no one will tell me what is wrong with me, and therefore i cannot get any treatment to make me better. it is hard when you have little kids 9 and 13 watching you fall down and dropping things and not able to lift things that they often can. it is also really hard when your inlaws think you are a deadbeat and feel there is really nothing wrong. i have a disability tag for my vehicle that i use only when i feel in need to. lately it is all of the time. i get out of my truck and almost fall. i go to get back in and it is hard to get my leg up. then when i get in there is a sigh of relief that nothing embarrasing happened. so, i have an appointment with the neuro late in december. unfortunately our insurance once again changes the first of the year and i will not be able to afford much if any testing. i call the doc to try to get things done before i meet with him but i am sure you know what that is like. days without a return call as i watch time run out. i am going to then have a doc wanting to do a bunch of tests and i will not be able to pay for them. please tell me what to do and what i have. please tell me how to get people to stop thinking i am a deadbeat. this is tough nough on my own mind to accept the changes without people constantly making comments and suggesting i just take any job i can find. i know what is going on with my body now and i am terrified of what i am almost sure will happen. can and will this get better ? i am so confused righ t now i dont know what to do. sometimes i cry because this is so scary wierd and i am not like this. this is not me at all. i used to be active, tough and able to do about anything. i am finding myself afraid to do simple things now like walking to get tha mail.

 
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Old 11-18-2009, 11:56 AM   #2
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Re: Getting freaked out and no answers. please help !

"normal results on a 1.5 tesla which people have been telling me probably wouldn't pick up ms anyway."
[LEFT]
Lets start here. First of all, what "people" are telling you this? You need to stop listening to these people. The 1.5 Tesla machine is used more then any other machine for MRIs...although its not the newest on the block, it certainly isnt obsolete. And, it will pick up lesions. Lesions, are scars, which appear as white spots on the MRI. Depending on the size, shape and placement, these are the first sign of MS to a neurologist....not all lesions are MS though. So its VERY IMPORTANT that the person reading your scans, is familiar with what they are looking at.

Secondly. Im so sorry you are feeling like you are. Its not surprising- you have allot going on. You need to first convince yourself that you are not a deadbeat, if you project that, others will assume it. What you are is in pain, confused and in search of answers...many have survived this dilemma known as "limbo land".

The most important thing I can stres to you is, for whatever reason your insurance keeps changing- NOW is the time to get a dx, while you have insuarnce. Once you get one, if you have a pre-existing condition, they do NOT have to cover you for one year...and if you get a diagnosis when you are not covered, youre in more trouble! the tests, as you know are expensive; however they are necessary. There is no way they are going to figure out what is going on with you, unless you have the proper tests done.

So I ask, is your Neuro a MS specialist? if not, can you find one? Secondly, are you keeping records of every test you have done? From blood work to your MRI, you should have a copy so that if you need to show it to a new doctor, YOU have it ON YOU and dont have to wait for weeks, while they get it from the old doctor. Start a journal with symtoms, dates, tests, results, etc and keep it with you.

i wish you the best...sounds like its been really difficult...but I also want to suggest that you consider talking to someone about your anxiety. Alittle medication to help you cope with this sounds like it might be beneficial. Most of us went on Xanax or some similar drug at one time; its not uncommon to help get thru the worst of this. But hang in there...answers are forthcoming, as long as you continue to advocate for yourself and demand the answers...since you are on a time limit with insurance, have you considered going to the ER and demanding to be admitted and have testing done? IT could happen that way....
Best to you...
Nikki
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RRMS- dx 05

 
Old 11-18-2009, 12:04 PM   #3
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mrknuckle HB User
Re: Getting freaked out and no answers. please help !

Hi Larry-----------------

from the back injury to the cramps and fatigue to the bathroom issues and jelly legs,brother you just told my life story.

First take a deep breath---yes it is scary right now but it isn't the end of the world.

then Get an MRI of the back and brain with contrast.Call the Doc,explain the insurance deal and have him order it now while the insurance will still cover it.He should certainly have the results before a late December appt.

Stay strong and positive Bro---I am praying for you--you are not alone.

much love-----------knuckle
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Old 11-18-2009, 12:11 PM   #4
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Re: Getting freaked out and no answers. please help !

excellent advice about the log and records Nikki----knuckle was slow about it and the Doc had to wait weeks
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I don't know much,but I am learnin

 
Old 11-18-2009, 01:13 PM   #5
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Re: Getting freaked out and no answers. please help !

I forgot to add these things earlier. I have had myleograms with nothing major showing up. I also went to a pain management and was given several injections, and first they talked about putting in some kind of pump and then realized with the final set of injections that it wouldn't be of benefit. They now want to put in an electrical stimulator in my spine. I do not like the idea and wish I didn't have all of this hardware as it is.
I have also had a lymes disease test and several other blood tests which all came back normal. This morning as I kept trying to get an appointment to see my regular doctor again I kept geting the same answer. " The doctor wants you to keep your appointment with the neurologist " and that is as far as I would get. He had given me ( last week ) BACLOFEN which does nothing more than make me feel even more tired and I still have the bad cramps. He has also given me Vicodin as well as everything below that to try to control the pain. None help and I now have a collection that will sit until it expires. I also recently had to remain active for a period of 4 hours. When I came in to rest I sat for about ten minutes. When I tried to get up I couldn't. I had to get help to get up and then couldn't walk well. My legs had no strength at all. As far as trying to not look like a deadbeat I guess I would have to say that if I did any more I would probably die or something. I try to do everything I used to. I have a permanent 15 lb. lifting restriction but with my life, and having done everything I ever needed to do I always find myself daily lifting well over that. I also have problems walking over 100 yards, but [I] try every day hoping things will be different. I find myself crouched down leaning forward trying to stop the pain as it had worked before the surgery. After a few minutes I slowly make it back. The only thing that makes me look like a deadbeat is that I am terrified of what will happen when I am in an employee situation where I cannot keep up or end up doing something I cannot and the employer finds out. I have had interviews and when you tell them the truth you are as good as done. No one wants to hire a liability knowingly. I don't think their comp. carrier would appreciate it either. So I keep trying to get something going on my own but nothing takes off very fast and I run out of money to ever get anying to take off. I myself feel that is my safest way to be productive is to create my own job on my terms. Some may call me an idiot but I just feel safer knowing if I need to take a break I can. Working for someone else will probably not give me that luxury. Even a sit down job right now wouldn't go well as I had to take a break and lay down once during my initial post. I cannot sit that long, and only if I lay for a few minutes can I manage the pain. I am actually better off up and moving a bit but even then I need to rest for a while after about each hour. Keep in mind I had an employer who I worked for for seven years and busted my butt. I worked alone doing jobs most would require two people to do like hauling and installing water heaters, appliances, large desks, credenzas, building and rebuilding entire areas of workstations in excess of 100 seats and it basically wore me out. From that I got my wage reduced, harassed, discriminated against because of my new disability ( tried to get me to quit )
and made to feel completely worthless as before the injury I was in upper management, and after they made my position a " janitorial / custodial " position to try to make me quit. I saved the company tens of thousands of dollars each year the entire time I was there. I have no trust that employers will not abuse the little I have left. Unfortunately it is time I fend for myself whether or not I can make it. I do not want a sit down job. I want to do what I always have and make a difference by fixing things and making people happy by saving them money they don't have. I am quite rounded but all in the physical labor / mechanical repairs field. I know my body is not right for that but it is all I know and that is why I need to " fix " myself before I can continue. I have a GED and no formal training. I cannot go back to school because I think I may have ADD. I do not do well in classrooms or meetings and such. I used to get razzed because I would doze off in meetings at my last job and I would try as hard as I could to not let it happen. By mid afternoon I cannot drive as I will fall asleep. I have done it many times and I do not trust myself. I learn very well as I go but I cannot read a book. I do not look at directions on a sheet of paper. I look at parts and I figure out how things go together and how things work. I am not a student or a book person. People tell me to go back to school but they do not remember what happened to me the last time I did that. I do. I am not going to let myself down or anyone else by doing something like that. I know what I can do and that is what I need to do. Call me stubborn, but at least I have faith in myself if I stay that route. Once I fail I will begin to lose my faith, my self esteem, and then I will begin to be worthless. I am not going to let that happen to myself or my family. I will find a way to make this work. I just need to get my body to cooperate.

 
Old 11-18-2009, 05:27 PM   #6
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Re: Getting freaked out and no answers. please help !

wow Larry. Im not even sure you read the words that Knuckle and I posted- it doesnt sound that way. We both have given you some words to think about, but after reading this last post of yours, I think you need to investigate new doctors. If they arent listening to you, then its time to look for help elsewhere..
Wishing you better days ahead.
Nikki
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Old 11-18-2009, 08:26 PM   #7
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Re: Getting freaked out and no answers. please help !

Larry,for eight years I was the best sub that my boss had,the man is like a brother to me and sang my praises while I worked for him.60 days ago,he had to let me go---I couldn't keep up with guys I used to work circles around a year ago.Did it hurt my pride?Yes ,I wont lie --- it did,

BUT life goes on.We are more than our jobs,we are more than some one else's opinion---I just spent the last several days building a ramp up into my home(the steps are just getting too hard now) a half day job that took me a week and you know what I feel when I look at it? PRIDE Bro not because it is the greatest thing I ever built but because I refuse to let this thing beat me.One day at a time is how we have to live this thing.Yesterday is gone and we will worry about tomorrow when it gets here.You are not worthless and don't let any one tell you you are especially yourself---now dust yourself off and get back to living.

much love to you Sir--------------knuckle
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Old 11-19-2009, 05:38 AM   #8
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Re: Getting freaked out and no answers. please help !

Hi Nikki, actually I did read the posts from you and Knuckle and I appreciate the kind words and support. I wanted to make sure I had the whole scenarion on the table especially the latest frustrations with the doc. as well as my in law who still thinks that I "quit" my last job. I was fired during the settlement hearing as part of the agreement. I really didn't have a choice. Beyond that he seems to think I should just take any job that is out there. He seems to think as though I am faking all of this which really bothers me especially since when he broke his leg and was on crutches I did as much as I could for him even being 2.5 hours away. We took the time to visit on the weekends to help them out and It is very frustrating that when the tables are turned the result is very different. Yesterday I slept most of the day away and I am still really tired. I am trying to get some help with what I can do to fix all of this. It seems as though I am stuck with the Dr. I have and I just hope things get better with all of that. Although this particular Dr. is only in the clinic I go to on Tuesdays, he is not in next Tuesday. I imagine because of the holiday. That is fine. I just want to find out what is going on inside me and why so I can start getting better. It is scary, frustrating and hard to stomach when things get like this and you don't have a clue why, or what to do about it. I feel for both of you. No one out there could possibly understand all of this unless they actually live the bads involved. Not even the doctors really have a clue as to just how bad things can really get. I can see where from the other side of things people can misjudge those who have these mysterious pains and other symptoms. But I can also say that when someone tells you they feel like they are dying more each day it is true.. You actually feel like your body and mind are leaving you behind and it is a terribly helpless feeling not knowing why or what you can do to stop it and fix it.

Thank you for all of the help you post. Whether it is critical of the direction I have chosen or supportive it is still good advice and I thank you.

 
Old 11-19-2009, 05:46 AM   #9
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Re: Getting freaked out and no answers. please help !

Larry, I will never be critical of your choices....as someone who DOES understand, I have walked in your shoes. Many of us have...

As for what others think, thats something only you can make up your mind to get over. As for being exhuasted and having aches and pains- those are real- and if in fact you are looking at MS, you are looking at a new way of handling your life/world. All of us have to manage pain, exhuastion, funnny looks, our own feelings and deal with things like injections, doctors appointments, etc. The smartest advice I can give you now is to ignore those around you, and focus on those that you love.....the amount of energy you expend worry about what inlaws and others think about your situation is better used to hug your kids and your wife.

Larry the not knowing, and the limbo-land are the worst period of your life. I know this to be true....however, your life will get back on track. Sometimes you just need alitttle help...whether its here, on the board, or with your doctor, or even some therapy, your life will get back on track. ITS far from over! MS is manageable....take a look at some of our other men on the board and read their posts- they are all in loving marriages, and all have self worth. You will find that part, too....Reach out to others who have been where you are, and take comfort in knowing you are not the first, nor are you alone.

I say a prayer for you for strength....find a way to stop caring what others say and concentrate what energy you have on getting stronger and being there for those you love. Continue to stay on top of your docs, and if you arent happy with what they say, then find new medical professionals.

And, in the meantime, know that no one (especially me) is criticizing....but what we are hearing, is allot of wasted energy, which at this point seems so important to you,but down the road, youll see that it isnt doing you any good. So, let us help you to focus on what IS important- and give you hints on how to manage this- we want you to be okay.

Hugs,
Nikki
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