Old 02-08-2011, 04:18 AM #16 (permalink)
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Default Re: Looking for a als specialist

Shar, It is natural for you to be feeling this way. Once you hear those ALS words, it is really hard not to focus on them. You do need to hold onto the hope that you get another diagnosis for your husband. Have you heard from VM yet about scheduling an appointment? This waiting has to be torture for both of you.

I tried to find, without success, the list of blood tests that my Gary had as part of the diagnosing process, but haven't located it yet. (And I thought I was being so organized with all this paperwork. Yeah, right.) I know there was something to do with testing for heavy metals - that might have been a 24 hour urine sample. I just can't remember it all, and I will continue to look. Others on here probably know off the top of their heads.

Is your husband able to go to work? It would help if you both can maintain your usual schedule while you wait for the next appointment. If he is having trouble with the foot drop and tripping or falling, an AFO would be really helpful. Call your doctor as it does require a prescription. There might an over the counter AFO, but I don't know for sure. My Gary was relieved to get his and surprised how much it helps. Of course we had never heard of it before. You probably think I am crazy for saying "your" Gary and "my" Gary, but I don't know how else to differentiate between them. I get tired of saying my husband or your husband.... they do have names!

To say this is a scary situation is minimizing the impact this is having on your life. Please feel free to vent any time - I have found the wonderful people on this forum to be so supportive and understanding. I wish I had more to offer than a virtual hug and sending positive thoughts your way.

Blessings,
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Old 02-08-2011, 05:42 AM #17 (permalink)
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Default Re: Looking for a als specialist

I am stealing this quote from one of the forum members. Serenade, please forgive me for taking this from your signature line. It seems like something that will be useful to Shar right now. I really love this quote of yours:

Hope quietly abides in our souls and whispers comfort
on our journeys when we need it the most.
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Old 02-08-2011, 07:14 AM #18 (permalink)
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Default Re: Looking for a als specialist

Shar hello, I so get how you feel right now and I hope your husband gets an all clear and no als, it is all the in between grey area that pushes you to the brink I have just been there for a while so understand how you both feel. <<<<<<<hugs>>>>>>>>>

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Old 02-08-2011, 03:07 PM #19 (permalink)
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Default Re: Looking for a als specialist

Thank you both so much, I do so appreciate your info and encouragement!
Thanks Jo for the quote I do like that! I read my bible (I try most days) and also find so much hope in God's Word, its ok about not finding the blood test just thought you may remember, no biggie, I don't mind my Gary and your Gary My Gary had another mri today going back to his neuro I think tomorrow, but I don't think they will say for sure, I think they just want VM to do the final diagnosis, I do like this dr, older gentleman and very nice.
I seem to be doing better but my Gary is pretty depressed, so sad to see him like this, well (about work) business has been slow as he owns his own construction business and has had no work lately, our son his wife and baby are staying with us while their house is being built and that has been a God send, gives us both some wonderful distractions baby hugs are the best
Talk to ya soon
Thank you again for so much support!
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Old 02-09-2011, 08:29 PM #20 (permalink)
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Default Re: Looking for a als specialist

Hi Shar,
So sorry it took me so long to get back to you hun. I have just been so very busy with my ill daughter, and now helping my mom take care of my dad. The feelings you are having are so normal, as are your husbands. Being in limbo as you are is hell, and your husband is just trying to prepare himself mentally by telling himself he has ALS. Its all normal hun. My dad had the MRI's etc, but it was the EMG that diagnosed him. Dr. Sayid Mohammad knew right away. My dad also has a doctor up at VM, and has an additional neurologist in Seattle through the VA. He see's both of them. Both specialize in ALS, and both give their different inputs and then my mom and dad make the final decisions on what treatments he wants to have. Going up to Seattle is a pain at this point though, so whenever possible we get referrals to local doctors for the speech therapy, PT, OT, etc.... My dad is very very lucky to be a veteran because ALS is fully covered by the VA, and ALS is a VERY expensive disease.
Whatever your husband has, I hope it is fixable hun. If it isnt fixable my best advice is to try and "live in the moment" which takes A LOT of self training. I am trying, sometimes achieving that, but a lot of times I just cant seem to pull it off, and it brings me down. Hold on to your faith dear heart, take deep breaths, and take things one day at a time. Give your husband a hug and just tell him that you are glad he is here today and celebrate that. Please let us know when you get a diagnosis.
Hugs, Kari
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Old 02-09-2011, 09:23 PM #21 (permalink)
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Default Re: Looking for a als specialist

Well I have good news!
Dr today said it can't be als, he is getting better, we are still going to keep appt at VM at the end of March, just got that set today as well, his team of dr. don't know what it is as he doesn't fall into any category, but definitely not als, I get that there is a slim chance but we choose not to think that way anymore, we believe it is not als with the info that we have received, dr said it may be one of those rare times that they will never know, while I don't like not knowing we both have a different perspective!

I pray for each and every one that does have this, I am so sorry, my heart breaks for you, I will keep you in my prayers for healing, comfort, peace of mind and for the knowledge of HIM! He is our saving grace!

I will check back with you my new friends
Love in Christ!
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Old 02-10-2011, 05:46 AM #22 (permalink)
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Default Re: Looking for a als specialist

Shar I am so overjoyed that it is not ALS, this is a godsend, whatever is going on with you hubby I hope they can resolve it for him and get his health back on track, take this experience and turn it into a learning experience, love and peace to you <<<<hugs>>>
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Old 02-10-2011, 10:42 AM #23 (permalink)
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Thank you I sure will!
Love and Peace to you as well!
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Old 02-10-2011, 11:19 AM #24 (permalink)
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Default Re: Looking for a als specialist

Yippee! Celebration time! So happy for you and Gary.

Also, how wonderful it must be to have a baby in your midst. A precious little person to help keep your mind occupied! We are still waiting for our first grandchild to be announced... someday?

Hang in there while a diagnosis is being made.

Blessings,
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Old 02-10-2011, 04:20 PM #25 (permalink)
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Haha that is exactly what I have been saying YIPPEE and PRAISE THE LORD! And yes so nice to hear baby foot patters throughout the house and lots of kisses! While it still hard seeing my husband struggle with drop foot and loss of strength in right leg, we just know he's going to be ok.

Again still praying for each and every one of you that suffers with als! And praying for a cure!
Loves,
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Old 02-10-2011, 04:39 PM #26 (permalink)
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Hi Kari,

I hope and pray that all turns out well for your dad, I say that with meaning, and don't mean to make light of anything he's going through, also I just want to say I am sorry to also hear that you have a sick child, you must be really strong, or getting there that is... can you share what that is, I don't mean to pry, I am praying also for your daughter for a complete healing, peace and strength, as well as for you and what you must be going through, God does not want His children to have to go through these things, I am sure He sheds many tears, I don't have the answers to the why's in life, we will find them out one day.

I hope that you are able to receive your own advice as it is very good advice for me too, hang on girl cherish the good moments in each day! Take Care!

Loves,
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Old 02-14-2011, 07:37 PM #27 (permalink)
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Hi Shar,
I am so very very glad that so far its not ALS hun! What a relief! As far as my own advice, I just try to live in the moment the best I can. Sometimes I just have to sit and breathe and take my mind somewhere else where I have found complete and udder peace and try and focus on every single detail of that place. Somedays it is one day at a time, and others it is just moment by moment. As far as my daughter, well in May of 2009 she was the first one to come down with the Swine Flu in Pierce county, which landed her in ICU/Good Sam for 9 days. She dang near died and since then has been anemic and just overall not well. Then May of 2010 she couldnt stay awake in class at Pierce college and the doctor thought it was narcolepsy. Then the stomach pain came in June followed by 11 visits to the hospital ER, sometimes being admitted, blood transfusions and more severe stomach pains. Its to the point where she had to take incompletes in her college classes and drop out because she cant function. Then FINALLY in December, after a kazillion tests they found out she has severe lead poisoning! Not just a little, A LOT! We tested our home here, and found just a trace amount in her bathroom on the counter, and the only other place we can think of that she got it was from her x-boyfriends house where she spent a lot of time the past 5 years. They have a nice home and all, but they have a shop for their business, tons of scrap metal, firearms, and car parts. I called his house and told them to test for the lead, but they refuse to believe it. Ahhhh long story. Anyway, to get the lead out at the levels she has she is on chelation therapy to detox. 19 days of really smelly pills that took a month to get a hold of from Chicago. She just got retested today. But at the levels she has, it is likely that it has set in her bones and we will have to do more therapy in a month. It has made her so sick she has not menstruated since last July, has also had some signs of some neurological symptoms going on, and is on heavy doses of pain meds. Now, top that off with the fact that in the middle of January she started to get blood clots in her left leg, a skin surface clot on her other leg and then while in the hospital for all of that, when they changed her IV she developed another clot in her arm. So, now we are doing Coumidin and she is getting checked every week. She is so very weak, and if she does any kind of exercise like just walking up the stairs, her heart rate goes up to 160-170 so thats not good either. I have had to make some hard choices on who needs the most help, my dad, (mom is EXHAUSTED from taking care of him) or my daughter. My husband died suddenly 9/07 so there is nobody else to lean on. Its hard let me tell ya. But I get through it all, one day at a time. I do lean on my faith a lot as well. Everyone here who knows me, pretty much knows what is going on. I used to be on here a lot more before my daughter got so sick, but now I just get to check in when I get a chance. It is a wonderful family here with a ton of support. I got the heads up about you from another friend of mine here, that you were from Puyallup, so that's how I came to your thread.
Please do keep us posted on how your hubby is doing, and enjoy life every moment you can! Without all the downs in life you never learn to appreciate the good!
Hugs, Kari
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Old 02-19-2011, 03:28 PM #28 (permalink)
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Default Re: Looking for a als specialist

Oh good LORD Girl! yikes.......

You have been through so much, I am not saying all that to discourage you in anyway! It is just shocking for me at this moment, I too have been through a lot in life not just in health issues but in other ways as well, it is still surprising to me how much people go through in this life, we don't want to, but we can when we have to, God gives us so much strength to get through each thing, again I know we don't always want to just as Christ didn't want to go to the cross, He did because of His love for us, and you go through all of this because of the love of your family and because of the love Christ has for us. I am so sorry if I sound preachy I don't mean to I am just so blessed and know that God does help us get through each and very day, He is our strength. And He brings knowledge to us through people like you and this site, so thank you for finding time for me, I totally get it that you aren't on here very often, hang in there, you can and will see better days. And unfortunately you are right, without the downs we never learn to appreciate the good!

My update is that dr's still can't find out what is wrong with my husband, though they still say its not als for sure, we finally got an appt at the end of March at VM and will still go hopefully DR. Ravits will know something, his dr here in Puy has put in a call to him and waiting to hear back from him to discuss my husbands case, hopefully that will be soon and we will know something before the appt. In the mean time my husband is going on anit depressants, this one has sent him over the edge unfortunately, its definitely still a difficult time for us and all your help has been so much appreciated! And yes everyone on here has been great!

I will keep you and your family in my prayers! God cares about each trail and He is there for you, even if you already know it, I'm telling you again! We can't get enough of HIM can we!?!

Loves!
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Old 02-22-2011, 05:08 PM #29 (permalink)
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Default Re: Looking for a als specialist

I'm getting nervous again, I know drs said that it couldn't be als but now my husband is slarring his words and his leg was twitching, it looked like a worm right under the skin jumping, I suppose he should go back in, but I'm afraid of the answer, do they start you medication right away? But then again not knowing what is going on is killing us........
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Old 02-22-2011, 05:30 PM #30 (permalink)
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Default Re: Looking for a als specialist

Shar try to focus on the words "not ALS". My hubby has CIDP--MADSAM and he has an atrophied rt. hand and forearm and foot drop in the right foot. He was a diagnostic enigma for a few months with a differential diagnosis of ALS. He has been treated with IVIG since 2007 which has kept the CIDP from advancing too much. He has bouts of some slurring of speech too when he is tired and his IVIG starts to wear off before the next treatment. Also, he has the fasciculations in his arm and legs. I know the terribly fear, but try to think positively--there are quite a few things that could be causing his symptoms other than ALS.
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