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I'm very sad and scared


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Old 02-10-2011, 04:15 PM   #1
peterpg
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Unhappy I'm very sad and scared

This is my 1st time writing here. I have had problems for about 4 years now and things just keep getting worse.I have no diagnosis yet (waiting 3 weeks on LP), but doc thinks MS. I am 52. male. Brain x-rays, blood tests, spinal tap, spine x-ray, emg's, SEG's...i've had lots of tests...no diagnosis...My right thumb and forefingers are frozen dead stiff (wont bend), hands are numb and painful, right foot numb, occasional numbness in forearms, calves, hips...muscle twitch in hands, tired,vertigo, and feelings of a cloudy brain with short term memory loss (worst of all)...its like i have alzheimers (but i dont)...is memory loss and confusion a symptom of MS? Just when i think i can handle a new symptom, it changes forms. I've dealt with all pretty good until lately...i want to die if THIS is my life now.Not remembering a conversation or what i'm doing with a sense of no end to it is too much.I'm scared and my wife deserves a life, not this! 26 years with her and THIS is too cruel. will i get better? what else can i do....i was once a successful business owner with 2 homes and a wonderful life...now, at 52, i'm unemployed, broke, living in a 5th wheel for 2 years now.even the state insurance i ended up with, is being cancelled in june...i dont want my children and grandchildren to see me like this.....what now?

 
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Old 02-10-2011, 05:38 PM   #2
MSNik
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Re: I'm very sad and scared

Peterpg,
First of all, welcome to the board. We are glad you found us. You need to slow down here though....one thing at a time!

When you say brain Xrays...do you mean a MRI? have you had MRIs of the spine and brain? That is the ONLY way anyone will be able to tell if its MS or not...or at least, rule it out. Second thing, there are no blood tests to determine MS, however there are an awful lot of things that blood work can rule out, so if your blood work is coming back normal, thats actually not a bad thing.

Next, I have to mention this. Depression, anxiety and fear can wreck havoc on your body. You definately sound scared and anxious. And, with right...but - there is no reason to be scared at this point. You know nothing! And, even if you found out it is MS, I can honestly tell you- its a heck of alot better then lots of other things you can be told.

MS is a disease which progresses for some people, not for others. After 5 years, Im still working 50+ hours a week in a very demanding job, and Im in grad school, getting my PhD- and I have 3 kids and a husband. I run, run, run, and even though I am challenged at some times when I feel lousy, I do NOT give up. Its all mind over matter in my world....the first piece of advice Id give you, is make up your mind to DEAL with this and NOT give up. Your comments sound like you already have.....please dont.

Next, as far as doctors go. You absolutely NEED to have one who is ultra familiar with MS in order to get a dx...."any old" neurologist will NOT do! A MS specialist will both diagnose and rule out MS, and it sounds like its time to see one....you HAVE to advocate for your own healthcare in this world! You mentioned your state insurance is being cut off....why? There has to be a reason for that. And, all states have a Medicaid program which can help you...have you looked into it?

This is a tough time. I get that. I KNOW it. Most of us have been terrified and all of us have survived. We can help you too..but break this down into manageable steps, and dont try to force yourself to cope with everything at once. ok? One piece at a time and youll be suprpised how well you CAN cope with this. You should also be talking to your doctor about alittle help right now with doing so. There is no reason why using some anti anxiety drugs, like Xanax , or something similar to take the edge off is a bad idea. ITs not bad, its sometimes, necessary. You should talk to your doc about it..

NO, youre not going to live like this forever. Yes, if its MS, its manageable and there are a ton of us here to help you cope...but first things first....many of your symtoms sound neurological in nature, but they can also come from 500 other things, including vitamin deficiencies...so stop projecting and tell us what your next step is...

I think it should be doing everything possible to see a good Neuro before this insurance runs out! What do you think?
Nikki
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Old 02-10-2011, 09:52 PM   #3
MSJayhawk
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Re: I'm very sad and scared

Welcome. If you have MS, the Mayo Clinic is in your backyard and is an excellent place to get a diagnosis. If you are in a disabled state, you can apply for SSDI though you would have a 2 year wait for insurance. The money is not a lot, but you can make it. I have been on SSDI since 2002 (first payment in 2003). You can also qualify for fixed rental for a place to live.

You have been through much per your writing. Get to a neuro who handles MSers and you should be in good hands. If you need to go on disability, your neuro will be able to provide that assessment. Visit the SSA website and look at the evidence needed for a diagnosis of MS; print it off and bring it to your doctor should you have MS. The list is helpful because it lists tests that should be run by your doctor.
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