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AngelManFL

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I wish I had the words, I am very sorry for staying silent for so long... I just had so much hope before going to the Mayo Clinic, and now I have none. The entire experience so just so awful and so not what we expected. They see 2000 new patients everyday, it is a very well oiled machine and they move people around like cattle with great efficiency. I have traveled there seven times now and will never return, have spent countless of thousands of dollars and beleive it or not I have no diagnosis and no treatment plan. My uncle went with me each trip and to every appointment, the last was with the Director of Nuerology, he sat there with a straight face and told us they had no Dx and no treatment plan. I left there just devastated, that was just last week on Tues 4/23 at 7am, we left that day right after the appt and will never go back. My Dr. here at home when I saw him before that last trip was so disgusted with reports and lack of concern for well being, he promised that no matter happened at the last appt he would do something to help me. I pray that he meant it. As for me, I have lost ten more pounds, my ability to coordinate my fingers is very difficult, and my window of functioning during the day is getting smaller and smaller. I am truly scared now, and see no hope in the future. I meet with my locak gp on monday. My mom is currently in hospital, kidneys go bad and she has difficulty keeping her balance, severe anemia - her red blood cells are not producing, her blood is just out of wack and she is being kinda difficult. I am just withering away, I still work about 5 hours a day - not enough, but I all I can handle. My back muscles are almost completely gone. I just so desperately want my life back, but honestly do not ever see that happening. Please forgive me for sounding so negative - it is the reason for my silence. This site for should be a place for hope. I think of you often and pray for you all daily,, Gina, Pat, Al, crystal and all of you who have come to be a part of me. I just pray that my gp will keep his word and find me help, will find out tomorrow I guess. I'm very tired and most rest now. Farewell for now and God bless.
 

crystalkk

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don,
I can understand your frustration, you have alot going on. You are in my prayers, I have been thinking about you everyday
wondering if you were getting any answers. What exactly did they do while you were there? Did they emg your back....
If so what did they say. You are very lucky to have a good gp that is going to do whatever he can to find you help.
I will be praying for your mom also.
 

MtPockets

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Don, I am so sorry for the experience you have been put through. Please feel free to vent, rant or whatever you want to call it here on the forum. We have all been in the same boat. You are not alone in this fight my friend.

Last night was another of those bad nights with only 2 hours sleep. A few tears, lots of pain, and sadness.

I know it helps me to let it all out here every now and then, and the support comes rolling in to help share the load. To give you an example so you do not feel alone:

Here is a rant of mine from the past.

Fact verses fiction: When someone ask you, "How are you doing"?

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like telling someone that or worse? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react. Yes it is a choice.

I usually try to put on my "I'm OK your OK face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ?. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got on-line instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL
 

Al

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Hey Don. Sorry things went so crappy for you. Try not to give up. I know it's hard. I had a fall this week and the OT wants us to use the Hoyer lift at all times now. I'm on Lithium but have deteriorated and Lee and my daughter (nurse) think I should quit it. At least I have a diagnosis though and got it from the first Neuro I saw and then confirmed by a few others. Frustrations are a daily part of MND's. Try to roll with the punches.

Sorry you're not having a better time of it too Al. Now I know what you meant by the joke reply.
AL
 

AngelManFL

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Thank you Crystal, Al & Al.

A little good news, my has been released from the hospital and she is staying with her sister for a little while. She meets with her Dr tomorrow to get news of the testing they did. Crystal, to answer your questions, they did do an emg - it took all of ten minutes and yes I had to beg her to please test my back - so she obliged and did one spot. She things were a little slow, but I was just fine. They did a swallow study which afterwords I met with a 'Speech Therapist' who said evrything was great! I said what about when I aspirate on water? she said it was fine, drink slow and carefully! I asked her what about the fact that I can't feel it on the left side - she "Oh, that's interesting, you try to have a good day" and we left her office! I thought my uncle was going to lose - his - mind. They 18 x-rays of spine?!?!?!?! My PSA was 2.5 so they did TEN BIOPSIES! Of course they were just fine - "it must be from sitting in the wheelchair at all times" - I said 'yeah no s#$%!" There was not a single Dr "overseeing" me or even cared what my name was - I was a "Clinic Number" - it was just from one test to the next, and that test would spawn another test and so on. All of course would be two or three weeks apart - thus the seven 600+ mile trips, each at 260 dollars a night - twice I was there for a week because it was cheaper to stay than go home just to come back the next day! I will never understand until the day I am dead how they as Doctors can sleep at night - especially the last one I saw as I sat there in tears begging him to not give up on me and "I'm sorry we just don't have don't Dx or a treatment plan for you" - like it was something he said every day - which he just might - but this my LIFE - MY DX and MY TREATMENT PLAN HE WAS JUST DISMISSING LIKE IT DIDN'T MATTER! now I'm all worked up and having trouble breathing... sorry to end on a bad note - but must restnow, God bless.
 

CindyM

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Don- I do not know what to say. I am sorry they cannot help you more. :cry: Cindy
 

AngelManFL

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Thank you Cindy, right now I'm really on the edge of losing it... If it were not for my Mom and the fact I work for my brother I honestly do not believe I take another day... But I have to trust God and pray that somehow He will use this for his good and I have to try not to be selfish. I'm at my office so I have to be brief - but I feel so lost and so alone and so helpless.. I met with my Dr on Monday because I made the decision to try and get off all of these narcotics - my thought is that may be masking something and my Dr agrees. He is making me take it really slow which probably is wise, but it is the best idea we could come up with - not even sure if it will be possible but I have to do something. I will try this on my own first, my doc thinks it might not be possible due to how long I have been on them(15 months). It seems almost impossible to believe that only 18 months ago I stood six feet tall, weighed 210 lbs of solid muscle and was in perfect health... now I'm wheelchair bound unable to get one foot in front of the other and weigh only 148 lbs... My hand-arm coordination seems to be degressing now too.. But according to the "Mayo Wonders" I'm seem just fine. I will send them a letter and try to be professional and just state the facts without my emotions seeping through, because it just doesn't seem right or ethical to what we experienced up there. My family is outraged, especially my Uncle who witnessed it all - but I want to try and handle it properly so maybe they might still be able to help me - or at the very least not treat there patients like cattle. I must get back to work now - I truly feel sick inside my heart and really need you all more than ever. You are the only ones I can truly speak honestly to - to my family I am supposed to be there rock and they all lean on me... If I speak even the slightest negative peep they jump all over me, so I just hold inside and try to trust God - but that can be very difficult at times, as I am sure you all are very aware... God Bless. Don
 

MtPockets

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Don, Don, Don, I can so identify with what you are going through. My son is an emergency room Physician, and many Doctors are JERKS. I would be scared to stand in their shoes at Judgment day. I feel your frustration my friend.

I am currently reducing my pain meds gradually. I have been on narcotics, Lortabs, Demerol, Duragesic patches, etc. for over 18 years due to chronic low back pain from a spinal injury I received from a airplane accident.

They recently had me on hospice for 45 days to deal with the increase in pain. I fired them after 45 days. For some reason I was having terrible leg pain at night and could not sleep. So they drugged me to sleep. That is no way to live. They wanted me to spend my life in bed drugged up until the end. Heck the end would come a lot quicker that way. I'm too much of a fighter to lay down and play dead. I'm going to go out preaching and praying until my last breath, God willing.

I replaced my mattress with one of the memory foam adjustable beds. Since then the pain has gradually eased off in my legs, but the sciatic pain still is there. So I am not taking any of the other pain meds now except the Lortabs for the back pain, and I am trying to reduce that to nothing.

My thought process is a lot clearer now, and I feel more like I am living each day instead of just existing. The withdrawal period was something to deal with, but it soon passed. I encourage you to do what feels right for your body. I will be holding you up in prayer through this ordeal.
 

Icanmanz

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Hi Don! I have been offline myself, for hmmmm, a week! Something went wrong with my computer, darn viruses. Took it to the shop, and the man that worked on it was so nice, thank God. I told him he was never losing me as a customer. Such an honest person, it's hard to run into those nowadays!
Don, your post caught my eye, even if it was a little lengthy (forgive me! LOL) I read the whole thing. I am soooo sorry to hear about what you are going through with those people at Mayo. People can be so heartless, why are they even doctors? You have no diagnosed, they have nothing else to tell you, so what are you to do now? Who are you going to turn to other than your gp? Does your gp know about neurological (sp?) issues to the fullest? Can he handle whatever is wrong with you? Are you having problems with your speech as well? This is so wrong? Have you contacted Alsa? Or do you have to be diagnosed'ed before Alsa responds? I wish I knew what to tell you, but I am out of words. All I can do is pray you will find help.
Keep us posted Don. I will certainly keep your mom in my prayers. Take care, and God bless, friend!

Irma
 

AngelManFL

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Thank you Al and Irma, all I can do is take one day at a time.. I have so much frustration inside me and please forgive me if my post sound angry - but they truly are. ALSA is not able to step in without a DX.. Right now I am just trying to get through today.
 

crystalkk

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Don, you have every right to be angry! We are here for you and praying you get answers.
 

MtPockets

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AngelManFL, Hey my friend let it all out. Better to vent your frustrations than to get an ulcer on top of it all. We understand believe me.

Irma, I know what you are going through with that computer. I have had to reformat my hard drive twice so far this year thanks to some knucklehead sending me a virus.

I always have the top of the line virus software and firewall running, yet they seem to get through. The last one tricked me real good. A pop up window came on my task bar that said I needed to update my anti virus program and to click it. So I did.

Big mistake, it loaded the virus, not my virus program update. So from now on I will only go into the actual virus program to do any updates. They are tricky little bugger's.
 

givenin

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AngelManFl I am also sorry for your treatment and hope you can rise above their insenitive attitude.

Al I agree with your wife and daughter please stop taking the Lithium, wean yourself off it. I have been thinking so much on the last months of my husbands life and I honestly beleive that it made things worse. I reported his symtoms to the Clinic and there was not much said because nobody knows for sure what will be with it. My husband was progressing pretty steady all along but when he started with the Lithium things speeded up. After talking with my Doctor she said I should speak up all info should be given good and bad.

Lithium was the only hope my husband had to slow down the progression and he had such high hopes and then about a week and a half after he started he became more afraid, swollen ankles very hot and cold the cold more than it had ever been like blocks of ice, his speech we were not able to understand and we were using the Hover lift, he couldn't eat but would force himself but still lost weight, drinking became even worse, dry eyes watery eyes not able to sleep, his breathing became more shallow. Some of these things were around already most came on after the start of the drug.
Maybe he was to far along to try Lithium I don't know but I do know it made things worse.

Sorry this may not be the place to rant on this but your remark got to me Al.
We have also lost another Pal here, Richard went to the full end of the road and is suffering no more.

Cheryl
 

Icanmanz

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Al, I Had my computer reformatted about a month ago, and then this happened. I am always very careful, try to be, anyway. This last time my husband was on the computer when it started going crazy. Hopefully it's fixed. So far so good! Okay, I'm out! Have a nice weekend. I am spending the night at my son's Shannon tonite, just to get away. God bless!

Irma
 

AngelManFL

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It is odd you have been talking about comp issues - I just tried to post and it failed.. it is probably a good thing - it was too long and too depressing anyway.. just having a really hard emotional day.. just can't stop the tears.. God bless.
 
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