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TomR1972

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Ok I am getting gnawing annoying pains that come and go in my neck, top of shoulder arms wrist butt legs calves and feet. Is it normal to have this but not to have foot drop or problems hodling onto things? My understanding is that normally one limb (area) really gets hit hard. My right leg is worse than any other but it doesnt stop me from walking and no foot drop. I am trying to hold onto any hope I can. Help please!

Tom
 

Jamiet

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Tom,

Whatever i have, which is probably MND or some form of it, does / did the same thing to me. I don't have foot drop and it affected all limbs at the same time, slowly. My tongue is the worse.

YOU need to schedule you an appt with a good neuro who specalizes on neuromuscular, as your clearly very anxious. I was there. You need some anit-anxiety meds, they helped me when i was having the same issues.

rgds,

jamie
 

TomR1972

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jamie

How long has this been going on for you and at what point are you? I get so confused some say a hand or foot should just give out then you read that that doesn't always happen either. Everything I read is just so back and forth.
 

TomR1972

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link

Thanks, unfortunately instead of helping my fiancee get ready for our wedding I spend most of my life on the internet trying to make sense of my symptoms to no avail. That is one of many sites I have read. I think I basically have to succumb to the fact that this will be a MND of some sort, I cant live for the future only for the day at hand and that I must start saving money ASAP.

I see my neuro on Wednesday for the 2nd time. He had me go through all the tests and now we will go over what the next step is. I already know it will be, "all we can do is wait and check back ever so often". When I mentioned to him originally that I either had als or ms he got upset and said that its not fair to me or my fiancee to go their yet, but it unfortunately was.

I am going to ask him for a referral to the Norris Als center in San Fran and at that time I probably will really get to see his eyes light up. If he wont get me that referral then its off to my gp. However I am going to get some life insurance because I will not leave my soon to be wife in a world of hurt. I think my work has life insurance but figuring i'll have to leave my job soon that option is not the option. I only hope I have enough time to have a kid and set up their lives before I wilt off.
 

ltr

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Tom - I know how you feel, because I, like many others here, have been in your shoes. So, please don't be upset when I say you are going completely overboard. I have symptoms like yours, Jamie has symptoms like yours, Annmarie has symptoms like yours and the list of us goes on. It is doubtful, to me, that any of us have als. There are so many things to be tested for that it could take years to test them all.

So, with that said, you should use this most important time in your life to help your fiancee with the wedding, take part in it so that years down the road you don't regret it. Your neuro was upset probably because he doesn't think you have als. Most of us have done the life insurance thing and then followed the path of checking back for a very long time and we still don't have als. I hope this gives you some peace of mind and helps you to realize you should live. Good luck. Leslie
 

Jamiet

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Tom, start getting your ducks in a row now, including your wedding....LTR is right, don't do something you will regret.

So, if i were you....agree with the doc, go back to him now and tell him your fine.....this way, your medical records reflect and your diag. with BFS. Then, get you a good disab. policy and life policy, becuase, you will have to "honestly" answer the questions and with a referreal to an ALS clinic, you will get nothing, so make sure you do the right thing first. If it is ALS, then there is really not a whole lot you can do anyway.

Regarding your life cover at work...just about all life policies have a "disability clause" in them which is life threatning, which in a nut shell means that if you have to leave work becuase of a disability, the life insurance automatically stays in place for the rest of your life and the premiums are waived, so you do have life cover, even if you have to leave work from the disabilty, otherwise, life insurance for workers would be a gimic...imagine, you get hurt, stay in teh hospital for a month, then die....."the life cover still applies"....it's the same with any disability. I've done my homework with mine, but it's pretty standard. You should get copies of all your benefit packages.

You may also be able to increase your life cover at work, which would be a real easy option...

IN any event, i wouldn't go back to a dr until i'm approved for everything..

rgds,

jamie
 

TomR1972

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You are all awesome!

Thanks so much for all the support even when I get a little nasty with my situation! We all need to get together have some mexican food and top shelf margaritas.

Jamie I am going to start to look into our life insurance policy at work. As much as I want a referral this coming week I know I have to be carefull in order to get covered on life insurance policy, thanks for the advice! I will definetely have more questions regarding this.

Thanks,

Tom R
 

ltr

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Mexican food and Margarita's.......now you're talkin! Leslie
 

CindyM

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Margarita's! Ummm! Cindy
 

TomR1972

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lol

How long has everyone been after a diagnosis of their situation? For me its so very early i think ....about 4 months everyone else?
 

ltr

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18 months for me, still no diagnosis---but, muscle biopsy on 6/6. So far I have been diagnosed with pheochromocytoma, MS, fibromyalgia, chronic fatigue syndrome, Isacc's syndrome and Lyme! They have no idea! Facial weakness, jaw weakness, leg weakness, trunk weakness and muscle twitching in exactly the same places. Muscle soreness and pains. Exercise intolerance, horrible pain after any exercise. Knife like stabbing pains. The list could go on, a lot like yours. That's why I told you that you really can't neglect the important things, like your fiancee and your wedding, because it can take a long time and you'll have wished you spent that time with your family and in a good state of mind. I know you are having a lot of anxiety over what is happening with your body, it's only natural. I think ALL of us have gotten treatment for that and it has helped immensely. So, if you haven't please give it a try. Leslie
 

CindyM

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I have a new theory for my situation. I figure if I have MND it must be a very slow moving type. Some people live 15 years or longer, and by that time I will be 75. In my family you get to be DX'd with Alzheimer's if you are in your mid-seventy's. :roll:

After meeting some of the great folks on this forum, and meeting some of the great folks at my Mom's nursing home, I think I would take MND if offered a choice. LOL. From what I can see the results are very similar. My Mom can't walk, eat, perform personal care tasks, or communicate. PLUS she has lost the use of her mind. If I am going to have a condition that gives me all of those things, I would vote for the condition that leaves my mind intact. JMO. ;-) Cindy
 
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Al

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What makes you think your mind's intact? A little long weekend humor from AL.
 

CindyM

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Sorry I missed that little joke the first time around, Al. I'd have liked to offer a quick comeback, but as the conversation is a few days old and I'm just catching up I'll have to admit there might be an element of truth-:-D Maybe my mind is not as intact as I thought!:-D Cindy
 
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