diagnosis

[sisgldnhr]

Hi,

My husband has been ill since February of 07. At first they thought he had cancer of the stomach and colon only to find (Thank God!) that he had a bacterial infection! that was taken care of with meds. He had gotten down to 115 lbs from 155. He was gaining weight back, he got up up to 126 lbs and we thought he was on his way to getting better.
But looking back......we now see that while he had the infection problems, other problems were present as well. Weakness primarily in his left arm and pain in his neck. He started going to a chiropractor for that. After several treatments the chiro told us that something else was wrong. He sent us to the first Neurologist. He did muscle/nerve condition tests then sent us on to a larger medical facility. He told us that he was not qualified to diagnosis what he thought my husband had. So we got to the large facility and have the nerve/muscle conduction tests done again. This Neuro told us that its not ALS but it is something and that my husband has had it for awhile. So he sent us on to the Neuro-surgeon for the biopsies. Which will be done on Monday, Feb. 4th. This fellow told us that he thinks that it is ALS.
My husband (Don) has no reflexes in either arms, either ankles & one knee. He has cramping in his arms & legs...day & night. He has been on oxygen since Dec 27th. His oxygen level was down to 67%. Our family Dr. told us anything below 90% is dangerous. He has muscles twitching in his arms but he doesn't feel it. It was also noted at the surgeon meet & greet that his mouth is full of salvia now.
At this point..... we just don't know what to do or think. He is also down to 121 lbs.

I don't know how long the biopsy results take?

Any feedback would be greatly appreciated,

Sisgldnhr

[CindyM]

I do hope they find something other than ALS! From what I've read around here, different labs have different time frames for getting out the results. But we will be here with you waiting for the answers and coping iwht whatever the future holds. I'm holding out for good news for you and your family! Cindy

[sisgldnhr]

Thanks so much Cindy! I pray that it isn't ALS. If it is......we'll do whatever we have to do.

I thank God every morning for a new day and all the new possiblities.

Sisgldnhr

[fjmart]

Hi Cindy
I know what you are going through! My husband started having problems in Feb of 07 also. We thought he had a stroke because he had a severe head ache in the middle of the night. In Jan he was lifting 100 lb bails of hay on our farm and his mind was sharp. But by the end of Feb he could not lift more than 20 lbs. as the months have gone on his hands have become like claws and have continued to atrophy. He has gone from 180 to 150 Lbs. and his short term memory is gone. We are waiting for an appointment for a second opinion at an ALS facility in Portland, OR. My prayer is that it is anything but ALS, and can be treated. We anve a faith based network and are trusting in our Lord for healing I will add you and your husband to our prayer list.

God Bless and Keep The Faith Remember, "Where there is faith there is hope, where there is hope there is love , where there is love the is GOD".

Does anyone know if there are any drug trials in Oregon or if thee are any drugs available?

[sisgldnhr]

Well he had his biopsies yesterday. The surgeon talked to me afterward and told me that he thinks that Don may have a skin disease as well because his skin was so thin that he said a piece of tape would have torn it.?? He took a 2 1/2" section of nerve from Don's right calf. Then went on to his right upper arm & took a piece of muscle, he told me that Don's muscle had nearly no color. Again????
When we had our first consultation with this surgeon he told us that only 50 % of the people getting biopsied get a diagnosis. Have you ever heard of that before??

We go back on the 14th for a diagnosis.

Sis

[crystalkk]

sis,

Did he say what it meant to have no color in the muscle?
Alot of biopsies do come back inconclusive.
What I don't understand is that you are getting results in 10 days... from what I read on other threads on this forum you can results for denervation fast, but it ususally takes about 4 wks to test all the stains
for other diseases.

If you are not satisfied, you can have the muscle sent to another hosp and have them look at it.
some people on this forum have done that as well.

You can do a search on the forum about muscle biopsies at the top of the page, and read other peoples
stories.

Did the nuero that sent you for the biopsy say what he thought it might be?

[sisgldnhr]

Crystal,

After my husbands nerve/muscle conduction test our neuro told us that it wasn't ALS....but that my husband has 'something' that he's had for a long time. What that something is we don't know. So he sent Don to a neuro-surgeon at the same facility. Telling us that they have their own Path Lab on site so that was a big plus.
When we had our appt. last Thursday with the surgeon and he examined him, he immediately said ALS. So I really don't know what to think at this point.

Thanks for pointing out that alot of muscle biopsies lack color. That had me worried quite a bit.

I didn't ask how long it takes for the results. When I picked my husband up in recovery the nurse told me that we had an appt. on the 14th of Feb. I wish that I would have asked!!!

Thanks for responding...

Sis

[sisgldnhr]

You're right Al...... they will not give me the biopsy results over the phone. She told me that we'll just have to wait until our appt. on the 14th. I asked then if she would fax the results to our family physcian. She told me that she'd have a nurse call me. Yeah right......just about when hell freezes over!!!

Sisgldnhr

[CindyM]

Waiting is one of the hardest things to do, don't you think? I hope the tests come back with something conclusive and I hope it is not ALS!

[sisgldnhr]

Waiting is one of the hardest things to do, don't you think? I hope the tests come back with something conclusive and I hope it is not ALS!

Absolutely Cindy! ...and then I think....do I want to know? I just hate the hurry up and wait. I guess this is where I am learning the art of 'patience'...

I pray that it isn't ALS.

sis

[CindyM]

Oh I know that dilemma! My docs ask me if I am ready to repeat the tests, “to see if anything shows up by now.” Well, since we ruled out anyhting else, my answer for the moment is, "let's wait."

[Lorie]

From everyone I have spoken to that has had a Muscle Biopsy. It takes about 4-6 weeks. It took about 4 weeks for Tim's (my brother). The Doc. said it had Characteristics of ALS. That was last summer. We have a Second opinion appointment in March.

All together Tim's had ALS 10 years. 3 years DX.


Good Luck!! Get him checked for Lyme Disease!!!!!!!


Lorie:-D

[ZenArcher]

The one thing I see regarding your husbands symptoms is the lack of reflexes. My reflexes are so hyper I feel like one of those field goal kicking toys. All you have to do is lightly hit my thigh and I kick away. I'm waiting for one of my girls to figure it out and see if they can make me punt one of the dogs across the living room. I hope whatever news you get is good.

[sisgldnhr]

The one thing I see regarding your husbands symptoms is the lack of reflexes. My reflexes are so hyper I feel like one of those field goal kicking toys. All you have to do is lightly hit my thigh and I kick away. <<I'm waiting for one of my girls to figure it out and see if they can make me punt one of the dogs across the living room. >> I hope whatever news you get is good.


I sure hope that its good news too!



your << >> comment!!! lol...I could just see it as I was reading it! ....be gentle with that doggie of yours :-D


sisgldnhr

[sisgldnhr]

From everyone I have spoken to that has had a Muscle Biopsy. It takes about 4-6 weeks. It took about 4 weeks for Tim's (my brother). The Doc. said it had Characteristics of ALS. That was last summer. We have a Second opinion appointment in March.

All together Tim's had ALS 10 years. 3 years DX.


Good Luck!! Get him checked for Lyme Disease!!!!!!!


Lorie:-D


Lorie,

I'm amazed by that! They told us that they would have his results back in 4 days!! I do know that they have a brand spanking new neuro path lab right on campus, could that be why we'd get it back so soon??
Also, when we go to the Dr. on the 14th I will say something to him about the Lyme Disease if they didn't get anything from the biopsies.

[sisgldnhr]

Well that biopsy results may be in but the surgeon isn't telling us the results. Don's appt. this morning was to check the area's that was operated on! I wasn't a very happy person when we left the Neuro-Surgery Dept. today. Our family Dr. could have checked those incisions and I wouldn't have had to drive 2 1/2 hours and pay someone to run my business for those hours! Guess I'm learning how the medical world operates. Very, very slowly........

Sis

[crystalkk]

Sis,

I would be very frustrated as well....
Did you call the dr that ordered the tests is is the one that is supposed to give you the results.

[sisgldnhr]

Crystal,

Yes I did...... they told me that they don't give biopsy results over the phone. We see the doctor that sent us to the surgeon this coming Monday. But I am going to call my family Dr. and ask him to fax a records request. Don't know if they will comply or not.

sis

[Lorie]

Sis,
If you like and trust your GP. Use them as much as possible. Tim and I both have the same GP. She is wonderful. What ever we need, we get. Tim has an ALS doc we have to see because of MDA help. We don't like him. At this point what can the ALS doc. do. I keep ahead of the equipment Timothy needs. All I have to do is call the GP. She writes a prescription, ASAP. I do more than the ALS doc. does. Maybe I should send him a
bill (lol).

Speaking of Biopsy's. When Tim had his last summer. We went to the appt. to get the results. We were sitting outside the Doc's door. He was scanning down Tim's results quickly and then called us in. He wasn't even prepared. This is someone's "Life" we are talking about. I let him know about it to!!

We definetly have to stand our ground!!!! Just a number. And they submit the Bill and get paid.

Maybe the Lab. makes a difference. I am suprised and skeptacle. Who knows?
What Hospital was it??? Cleveland Clinic??

Lorie

[sisgldnhr]

Lorie,

We're fortunate to have a GP that we like too. He has been there for us since this all began. I can call him on the phone, tell him what I want and we get it. I'm sure that once we get Don's DX we will be seeing/talking with our GP alot. He told me several months ago that I can call him at home and he will make a house calls if need be. Isn't that amazing in this day & age??? He is really worried about Don, everytime I go into his office he gives me a hug and reminds me that I am stronger than I think I am.

Thanks for your feedback Lorie......it helps.

Sisgldnhr

[sisgldnhr]

Lorie,

Don is going to MUO (Medical University of Ohio), we had the choice of MUO, Cleveland Clinic or OSU. We chose MUO because its an hour away versus two hours. But we have discussed moving on to Cleveland Clinic if need be.

Sis

[crystalkk]

Sis,

I have been praying for you and your husband about the biopsy results today.
Please keep us posted with the results..

[Lorie]

Let us know ASAP! We are concerned. Take Care!

Lorie:-D

[sisgldnhr]

The good news is......Dr. Prizada does NOT think that its ALS. There is something wrong with Don's muscles, he just doesn't know what it is. The nerve biopsy came back good, where as the muscle biopsy came back inconclusive. Dr. Prizada has put Don on 60 mg of Prendazone (sp) a day to try to build him back up. He wants to see him again in 6 weeks. I pray that the steroids help.

Thanks so much for your thoughts and prayers!!!

I will keep updating as we get thru this...........sisgldnhr

[sisgldnhr]

Also........I asked about Lyme Disease since whatever is going on is still a mystery. He went back thru Don's bloodwork and he doesn't not have Lyme Disease either. Here he had already tested him for that.
Don's muscle enzyme level is still high they just don't know why.

Sis

[sisgldnhr]

Okay......now I'm really confused. I stopped at our family physicans office this morning to tell him what happened yesterday and to tell him the biopsy results. After I relayed the information to him, he told me that the information was not correct. At that point I was stumped! He told me that they had faxed the biopsy results to him and that Don has a MND, I can't remember just what they called it but that whatever they called it...but that it is terminal.
I just called our family Dr.'s office to have them fax me those results so that I can call MUO and ask them just what the heck is going on.

Also our family Dr. feels that Don should be sent to a larger more specialized medical facility.

Sitting here in shock.........sis

[crystalkk]

sis,
take a deep breathe and please keep us posted......
hopefully the dr at muo has a good explaination
there is something i always learned ask for a copy of the report.

[sisgldnhr]

I just received that fax from our family Dr. Under diagnosis it states the following:

A. Nerve, right sural, biopsy:
-no significant pathologic change
-some freezing artifact present
B Muscle, right deltoid, biopsy:
-severe denervation atrophy.


What does this mean??

Our family Dr. explained it to me like this..... lets say your muscle is a plant, your blood is the water and your nerves are the fertilizer. Don is not getting any fertilizer therefore is muscles are deteriorating.

Sis

[Icanmanz]

Sis, I am so sorry to hear this. You and your husband are in my prayers. Keep us posted! God bless!

Irma

[Peg B]

Hi Sis,

I just read all the posts. I am so sorry to hear all of this. My prayers too go out to you and your husband.

You stated your Doc wants you to go to a larger facility. Are you very far from the University of Michigan in Ann Arbor, Michigan? It has an excellent ALS facility. Everyone has been very personable and skilled. I get full reports as does by family Dr. When there was a glitch with my getting the last report the liason nurse, sent it to me immediately via email. The head Dr. has called me back during the day and corrected a report over the phone. They answer all of my questions in detail.

God Bless you both. Sincerely, Peg

[sisgldnhr]

Peg,

We go to our GP on Wed., the 27th. I will ask him to refer us to Ann Arbor. I'm going to call my insurance company today to see if they will allow me to take him there (which is a total crock...but thats another post). Ann Arbor is just 45 minutes further north than MUO.

Thanks for your input Peg.....it means alot to me.

Sis

[CindyM]

My thoughts are with you and your DH, Sis.

[sisgldnhr]

Thanks Cindy. You know every day I feel something different. I think I'm slowly grasping just where we're headed...and it hurts. My sister-in-law wrote to me yesterday and told me that I don't have to be strong ALL the time. I think.....yes I do!!!

Praying has really helped me alot over this past year. And the Lexapro hasn't hurt either
:)

Sis

[Peg B]

Hi Sis,

Best Wishes on all of this. Keep us informed. Sincerely, Peg

[siuska]

Ann Arbor Docs are great...just zip up 23 and you will be there before you know it...

[Jantionette]

I am going to ann arbor too, I have a post where they were talkiing about how good they were. The doctors name is Eva L. Feldman so you know.

[CindyM]

Hi Jantionette. Welcome to the forum. Cindy

[Peg B]

Hi Sis,

How did the Doc visit on Wed go? Did you find out anymore info on your husband's condidtion? Did you get a referal to Ann Arbor U of M? Hope things are looking up for you guys. God Bless you both. Peg

[sisgldnhr]

Our family MD told us that Don is terminal, the Dr. says that he has up to 5 years. He said that the Neuro will most likely refer him to Ann Arbor. We have that appt. in 4 weeks. Don took the news in stride. He has such a positive attitude. But I know he is just as scared and uncertain as I am.
We had a couple martini's last night and he opened up a bit. If thats what it took for him to talk w/me about it, then so be it.
The 60 mg of Prendazone is tearing his stomach up. But he is eatting all the time now :D Our family MD gave him Nexum instead of the Axid the Neuro perscribed. Neither one is doing a very good job.

Thanks for asking Peg........Sis

[Peg B]

Hi Sis,

I am so sorry to hear this, but do not give up hope. There are many who were given the 5 year and have lived much longer. The one day at a time is the best. I hope you have lots of support at home and in the community and you get all you need. God Bless you and yours. Sincerely, Peg

[Peg B]

Hi again Sis,

Can he get the prednazone in liquid form or IV so it is not acting on his stomach? Just a thought. Peg

[sisgldnhr]

What a great idea Peg! The liquid steriods! We are supposed to call the Neuro this week and let him know how Don is doing on them, I will ask his nurse if we can get it in liquid form. That would be wonderful if they could do that. He has had h-pylori this past year and they've discovered that is what causes peptic ulcers. So he has a weak stomach anyway for the ulcers.

Thanks again Peg..........Sis

[sisgldnhr]

I talked with d/h neuro nurse today, to let her know that Don is having a hard time with the steriods (60 mg a day). Its tearing his stomach up! Lots & lots of gas, can't sleep but he has gained 4 lbs.
I also asked her about the Ann Arbor Clinic, she talked to the Dr. and he said he would send a referall for Don to go anywhere he wants. He said that since he can't get a DX for him maybe someone else can. I also asked for a Bipap machine so that he can get some rest at night but I'm told that he has to go thru a sleep study first.
Right now I feel that we should skip the sleep study and go straight to Ann Arbor.

Any thought on this??

Sis

[Peg B]

Hi Sis,

My two cents worth is to skip the sleep study. You can do it later if nedded. I had to change my appointment at U of M and in order to get both the clinical and the EMG/NCV objective studies. I had to move it from April 3 to May 1. So you may have to wait a whole month. Get it scheduled ASAP. So maybe you could a sleep study in if you have to wait a whole month for U of M. When I first went there I had a 6 week wait.

Also about the meds. I saw a French movie the other day and they mentioned that meds in Europe are often given in a suppository. So I thought of your husband. What did the Dr. say about a different form of the prescription? Remember I get it in IV form when I get the IVIG treatments. Take Care and thanks for the update. Peg

[sisgldnhr]

Peg,

I asked if they made the steriod in a liquid RX and she told me no. And didn't offer any alternatives. She did say that the Dr. wants him to remain on them for at least another 4 weeks.
I also need to call my insurance company about being able to go to Ann Arbor (when I called Ann Arbor Clinic they said that I need to get my insurance approval first). I know that we can go to Cleveland but I'd prefer Ann Arbor.

Don has an appt with Social Security on Tuesday, March 11th. If his disablilty goes thru.....then he could go to the clinic in Ann Arbor...no problems. I think its bull that our insurance gets to decide but thats just the way it is right now.


Sis

[crystalkk]

Sis,

Did the dr say why he wants him on the steriods?

[sisgldnhr]

He told us that he didn't know what else to do for Don and felt that maybe the steriods would build him up some. D/H is so thin now, I think that he is trying to put some weight back on him.

My brother told me that using steriods that way is risky business because it puts you on such an emotional roller coaster. After my mothers cancer treatment...she was on steriods for a year (not as high of a dose) and she felt great. Well that is just not happening to Don. The only plus that I see is the weight gain but to tell you the truth...I think the weight gain is because he hasn't been able to go to the bathroom!

Sis

[CindyM]

Sis: is the doctor familiar with ALS? Most docs do not get a change to treat an ALS patient, thus they lack the necessary experience. A doc associated with an ALS clinic, however, may have a couple of hundred in his or her care.

[sisgldnhr]

Good point Cindy.... you know, I don't know how many ALS patients this man has seen. He is the head of neuro at MUO but I guess I never thought to ask what his experience actually is with this disease. I do know that every time that we've seen him, he keeps saying this is just not typical of an ALS patient. From what I've read here.....just what is typical??? Don told him that he has noticed small changes over the last 5 years but this past 4 months has been much more than small changes. He can't walk now without hanging on to the wall, a chair, the counter. His breathing scares me even with the oxygen he is still having terrible anixiety attacks thinking that he can't breath.

I pray that its not ALS. But I can see whatever it is taking a toll on him more each day.

Thanks for your input......Sis

[CindyM]

Well, I feel better knowing that you to to MUO. the ALS chapter of Ohio recommends this clinic:

The Ohio State University ALS Clinic
Department of Neurology
395 McCampbell Hall
1581 Dodd Drive
Columbus, OH 43210
Medical Director: Steven Nash, MD
614-293-7715

Are the two affiliated in any way? If not, maybe you could get a second opinion from Ohio state, assuming that it is not too far away from you. (LOL, I live in a small state where you can drive from one end to the other in less than 3 hours. I have to remember htat some PALS go 50 miles just to get to the market!)

[sisgldnhr]

Cindy & Peg,

I called this morning to see if Ann Arbor Clinic is available to us and it is NOT. So I am now working on getting him into the OSU clinic in Columbus. If they aren't in our plan then I know that Cleveland Clinic is.

We received a letter from Don's insurance company saying that they are reviewing his medical records and as of now his sick pay has been suspended. Unreal!!

I'm getting better at jumping thru these hoops :-)


Sis

[CindyM]

Sis: ask for a hearing with the insurance company. I do hope things turn around for you soon!

[Peg B]

Hi Sis,

I am really sorry to hear this. I hope the OSU clinic works out. As far as the sick days, if Don has a union, they may be able to help.

Cindy is right - a face to face meeting may be helpful. Please note this may also just be a mistake, both my sister and I have caught many mistakes. Take Good Care, Peg

[sisgldnhr]

Some good news today! Toledo called me back, I gave them OSU's scheduling phone number and Don has an appt. at OSU ALS Clinic next Tuesday, March 18th. I am thrilled that they were able to see him so quickly.

I'll let you know what happens.

This forum has been such a great support system for me. Thank you so much for being here.


Sis

[sisgldnhr]

Just wanted to let you know that the gentleman that was assigned to us at SS was so nice! and very helpful. He has put Don on the fast track (must mean Level 4?). He said that we would hear back from them within 30-45 days. And that if Don is approved, his benefits would be available to him starting June 08.

Sis

[siuska]

OSU Medical is one of the top medical centers in the US...Michigan is good also. i have been to both.
i go to OSU Medical, i would ask to speak with Dr. John Kissel-he is so nice and kind and good at corresponding...he also does a lot of research on the ALS part of things and has a new drug trial going for PALS...talk to him because he is the best person to find a good ALS doctor at OSU...John.Kissel@osumc.edu. You can email or call at: 614-293-4981. You can tell him 'Dr Simensky's patient' referred you.

[sisgldnhr]

OSU Medical is one of the top medical centers in the US...Michigan is good also. i have been to both.
i go to OSU Medical, i would ask to speak with Dr. John Kissel-he is so nice and kind and good at corresponding...he also does a lot of research on the ALS part of things and has a new drug trial going for PALS...talk to him because he is the best person to find a good ALS doctor at OSU...John.Kissel@osumc.edu. You can email or call at: 614-293-4981. You can tell him 'Dr Simensky's patient' referred you.

Thanks so much for this information. I know that Don's first appointment is with the Director, Dr. Steven Nash. I will copy the information down that you were kind enough to share and take it with me :-)

Sis

[siuska]

email or call Dr John anyway...he is very knowledgable especially with new treatments

[sisgldnhr]

Thanks!!! I'll do that :-)

[siuska]

Dr. Bakri H Elsheikh preformed my EMG studies and he is very good at this kind of stuff. EMG interpretation is an ART. i think Nash is also top for EMG...i could ask my neuro for you....Dr John is THE DOC post ALS diagnosis- if you want to get more info you can go to physician directory at osumedical...Dr Elsheikh and Dr John are the two there , (after many)that i know ARE smart, knowledgable and thorough accompanied with actual bedside manner...the other doc i like isn't at OSU but in Columbus.... and, i wouldn't trade him for the world, is Dr Steven Simensky, but he is not an ALS doc...incrediably smart, knowledgable and was able to diagnose after other 'top docs' took a stab (literally) at it and woefully failed . Dr Simensky actually cracks a text or two....i just adore him...cute and funny too. He got me back literally on my feet.

[sisgldnhr]

Dr. Bakri H Elsheikh preformed my EMG studies and he is very good at this kind of stuff. EMG interpretation is an ART. i think Nash is also top for EMG...i could ask my neuro for you....Dr John is THE DOC post ALS diagnosis- if you want to get more info you can go to physician directory at osumedical...Dr Elsheikh and Dr John are the two there , (after many)that i know ARE smart, knowledgable and thorough accompanied with actual bedside manner...the other doc i like isn't at OSU but in Columbus.... and, i wouldn't trade him for the world, is Dr Steven Simensky, but he is not an ALS doc...incrediably smart, knowledgable and was able to diagnose after other 'top docs' took a stab (literally) at it and woefully failed . Dr Simensky actually cracks a text or two....i just adore him...cute and funny too. He got me back literally on my feet.

Thanks so much for this information!!! I am going to look Dr. Simensky up in my insurance plan, to see if he is available to us. You're a gem Siuska! I'm also going to print this info to put in my husbands file that goes everywhere with us!

Healing hugs........sis

[siuska]

BEFORE YOU GO

Make sure to take ALL Medical Records with you...tests, labwork, ect.
write down latest symptoms on a short bullet list like:

Can't breathe
Can't walk without support...
losing weight...
anxiety attacks...
and give it to the Doc

also add to your bullet list
all prescriptions, amt's and how taken...
write your questions down on another piece of paper so you remember to get all Questons answered - do top 5 or 10 as you don't want to overwhelm the doc...

and take a tape recorder so you can remember what the Doc told you as this is VERY stressful time....meeting with docs).

put all of this in the car the night before so you don't forget and leave without it.

[siuska]

Sis,
i am curious to know if Don ever served in the military overseas?
Also, did anyone do a heavy metal test on Don?
just curious

the best of grace and luck on your upcoming appt...which is providential as it happens to be on my birthday!

[sisgldnhr]

Yes... Don was in the army from 1969-1971. He spent his first year in Germany and the second in VietNam.
They have done heavy metal tests on Don as well as Lyme Disease.
MUO told me that they have faxed all medical records to OSU when they made Don's appt. I wonder if they will send the slides from his biopsies. Is that customary??
I also wonder if they will do their own muscle/nerve conduction tests at OSU.

I will get a tape recorder also. You know I've wondered about that because I can't remember all the information that they give us at these appointments. Thanks so much for the advice.

MUO put him on 60 mg of steriods to see if that would help build him up. It has made him so sick. He has this glazed look about him. Can't sleep, can't go to the bathroom, keeps thinking that he can't remember how to breathe. I called MUO to ask that we reduce the steriods to 40 mg, at first they said no but they have since called back & said okay. He is doing much better with the lesser dose. He was up only twice during the night last night.

Sis

[sisgldnhr]

the best of grace and luck on your upcoming appt...which is providential as it happens to be on my birthday![/QUOTE]

And....... Happy Birthday!!! to you!

[siuska]

the pred (nosine) should help Don Breathe if it is an obstructive problem unless he has VOC dysfunction/paralyzed...it will make him edgy and nervous, because basically it's adrenaline...i have taken it for asthma...you might ask your doctor if it is possible that Don is hyperventilating or has Vocal Chord Dysfunction/ Paralyzed...has anyone looked at his vocal chords? That might be an excellent question for the bullet list...

as for medical documents...i think just the reports are sent...no actual XRays, Samples...you might call to find out...and yes, it is likely OSU will want to do another EMG from their guys...EMGs are only as good as the interpreter...

i am sorry to hear of your husband's suffering and hope they find out what's wrong and can fix him up again and feel better...

[siuska]

oh, i forgot, prednisone can make you either eat more( or in my case) not eat and can constipate...i take a product that has helped me with this problem called SuperSeed...you find it at the Health Food Store...i also take Tri-salts because my electrolytes were wacky and it was a good substitute for the drugs (yuk) they wanted to give me for low BP(90/50)...still have to add my sea salt in...and it works-haven't fainted in quite awhile!

[sisgldnhr]

the pred (nosine) should help Don Breathe if it is an obstructive problem unless he has VOC dysfunction/paralyzed...it will make him edgy and nervous, because basically it's adrenaline...i have taken it for asthma...you might ask your doctor if it is possible that Don is hyperventilating or has Vocal Chord Dysfunction/ Paralyzed...has anyone looked at his vocal chords? That might be an excellent question for the bullet list....

Siuska,

Maybe you can tell me this..... Don is experiencing (as he describes it) what feels like an out of body experience. Is that from the Prendizone?? or is it the disease. This is going to be on his bullet list as well.
Also he will go to sleep then when he wakes up.....he is sitting up. He sits up while he is sleeping. He has also woken up laying down and he says he has to fight the urge to sit up. He said its the strangest feeling. I'm wondering if his mind is just telling him to sit up so he can breathe???

Sis

[siuska]

well, to be honest, i took prednosine when i had asthma and couldn't breathe so i felt much better and less distressed to be on it....it is basically adrenaline so one's fight or flight instincts are on alert...it's like speed...as for out of the body experiences...that would be something to talk over with a healer or shaman...not me...i'm not sure medical docs could answer but, you could try...i have never experienced that when i was on prednisone

anxiety can cause breathing and dissasociation (out of the body experiences)...it's scary not to be able to breathe and if you combine that with the stress of illness and prednisone, financial worries when one cannot work, well that's a powerful promoter of anxiety...

tell Don good luck and feel better soon

[sisgldnhr]

anxiety can cause breathing and dissasociation (out of the body experiences)...it's scary not to be able to breathe and if you combine that with the stress of illness and prednisone, financial worries when one cannot work, well that's a powerful promoter of anxiety...

I think you're right. He has been talking with me lately about making sure that I'm going to be taken care of when he's gone. Kids, house, insurance, you name it... what a load of worry!
He has been a bit better since they lowered the dose to 40 mg. a day. I hope they reduce it to 20 mg. I think he could adjust to easier.
I'm sure we will learn more after his appt. on the 18th.

Thanks for your advice and support.....sis

[sisgldnhr]

Went to OSU today. How refreshing to have physicans actually talk with you. Not to you but with you!
After going over Don's test results Dr. Nash told us that on a scale of 1 being less probable to 4 being most probable that Don is at 3. He told us that Don needs to think about getting a feeding tube while he's well enough to have it done. He feels that however long Don has is going to be linked to his being able to intake calories. Don weighs 119 lbs. Here come milkshakes along with his Ensure.:)

We also saw a pulmunary (sp) physican today. Don has 25% lung function from the tests that he ran today. They also are checking his copper level in his blood. His BiPap machine will be delivered tomorrow.

They will be doing another EMG in June.

A rep from MDA talked with us and offered their services for equipment and they told us that they will pay our deductible for today's appointment. Wow!!

Just wanted to let you know where we stand today.......Sis

[Peg B]

Dear Sis,

I am so glad you got better attention and support at OSU and from MDA. I assume you are going to get the feeding tube and I sure hope that it is a peaceful transition. All of this is so hard. Please know you are in my prayers. Peg

[sisgldnhr]

I am encouraging him to get the feeding tube but utimately it will be his decision.

Sis

[sisgldnhr]

Also I forgot.......

I did take a tape recorder, what a great idea that was!! Thanks so much Suiska!!

We are also getting Don off of the steroids. Dr. Nash feels that it is doing more harm than good for Don right now. So we are going to slowly wean him off of them.

We also talked about Rilutek and Don has decided that he will not being taking it. Dr. Nash told us that it may prolong Don's life maybe 3/4 months.

That 'out of body' or disassociation feeling that he has. The doc says its the disease not the steroids.

Another thing that Don has been experiencing is for example: he is sitting at the kitchen table and see's that the dishes need done. In his mind, he plans on getting up and doing them. Two hours later he is still sitting there looking at the dishes from his chair. Dr. Nash explained that Don's mind is working just fine.... but the signal from his brain to his arms, legs, etc...to get up and do those dishes is not working. Don has found this to be very frustrating to say the least.

Sis

[siuska]

Sis,
i am soo happy you and Don got the help you needed and that Dr Nash had the foresight to have the MDA people there to also assist....the Bipap will help Don's breathing greatly...i am glad he is coming off the Steroids...find out what ALS research studies are going on there...i think i gave you the numbers...also ask about lithium for Don...you could call them...i think physical disability (emotional level) is harder on a man.
Maybe Don could talk about it with another PALS???
Maybe introduce him to this website???
S