Need it too
 

Mrs. D,
I'm very interested in the mag product. I'm waiting for you to test it out. I've got a severe muscle spasm/tightening/whatever in one leg and hip. I've been using the Slo-Mag for some time. But your post mentioning the tense muscle really intrigued me. I'm hoping it helps you and you will let us know.

Billye

Melody, HOW is Alan's pain now?
 

that the possible s/e's and fact he'd been in the hospital have subsided? I'm a bit concerned if it's not working as you'd indicated that he'd still had the same pains and had to be massaged as you'd said in your posts yesterday.. If I were you, I'd convey these facts to the neuro[prescribing doc?] for further advice/doses or options?

I KNOW I'd felt a really, REALLY, rapid & good response after [my first hour] my first infusion. I was able to walk, mostly pain-free from the get go...I realize it doesn't 'take' on the first try some folks...depends on the blood work and spinals etc... Be aware tho, that my 'Walking abilities' had been limited exclusively to walking from doc office parking lot to doc office prior to IVIG... Now I can walk thru a 'small' grocery store with out multi-day payback. AND, continue to drive safely, a must in a suburb! One kind of like Northport or Southport on LI or Westchester, or Bergen Co in NJ....[used to live there] same kind of things.. only further apart]... Maybe I got lucky? Dunno.

Any word on what's the thinking on biopsy? Hey! Call me McFly or any breed of chicken about the whole concept! But, I won't cluck on command!

Thinking good thoughts till later - j

Xanax
 

Taking 2mg for sleep is a lot, and, unfortunately, because it's short-acting, it's a hard drug to stop. All the short acting benzos are hard to get off. Usually, people get off by switching to a long-acting one, like Klonopin, and tapering off that. Since it's not covered by your drug insurance, it would do you well to get off it, so you can get onto something covered, like Ambien.

But Mrs D is right, do it slowly. Not because you'll have something terrible happening if you stop all at once, mainly because it will be HARD for you. You'll have rebound problems with falling asleep if you stop quickly.

So just go down to 1.5 for a week, then 1.0, then ..75, then .5 and then off. But I'd suggest not changing the dose more often than once a week.

It should be pretty cheap as a generic, though, so you might find you can afford it if you want to stay on, or if you need to fill a prescription to get through the taper.

Also, I think Mrs D could be right on about the Mg. You might want to take a calcium/magnesium supplement-then you kill two birds with one stone!

And the nerve biopsy? Is that subject dropped?
I hope so.

Hang in there...

Hi Liza Jane:

Last night I only took 1 mg. I was prepared to take 1 and a half but I figured, go for it. I took it and no prolem. In about an hour I was fast asleep and dreamed all night that I was at a shower with people from General Hospital and instead of meals in front of our seat, on the table were little computers that turned into TV sets and they showed movies. I began a conversation with Anthony Geary of General Hospital.

It was the best dream I ever had. Woke up with no problem.

But today, with the weather being disgusting outside (going from warm to cold, to warm and very humid, I just out of it. Had some soup and salad for lunch. Went food shopping. Feel better. I'm not going to worry about the xanax. I'll taper off like you said. If I need to continue, I'll get it from drugstore.com. But honestly, I'd rather not be on a benzo than on one. I have to learn to cope with life rather than always be medicated. I mean, if I continue with the xanax, what happens as I go along. More xanax???

That's what happened to my mother in 1995. I never knew it but neighbors told me she was stealing xanax from everybody in her senior citizens community. I was told that a big problem among the elderly is depression and they drink and use xanax. Seems my mother was a big xanax user. I only found this out after she died. Amazing what one learns about family after they are gone.

Now as far as Alan's nerve biopsy idea, well, he read the postings and believe me, he is not jumping into anything. We are still waiting to hear from Dr. Goldfarb about when the home infusion thing is going.

Alan goes back to the gym tomorrow, he's chomping at the bit to exercise, (I just him "how's your pain leve" and he just said "too early to tell yet".

But he wants to exercise so that is always a good thing. In his case, it does wonders for his PN.

will update.

And how are you doing??????

mel

How's Alan doing
 

Hi Melody,

I was wondering how Alan is getting on since the IVIG.
Lupin

Alan is absolutely exhausted
 

He came home Sunday feeling fine. He said "I'm giving myself till wednesday, then I'll go back to the gym".

Since then, he acts like he has the stuffing knocked out of him if you get my drift. Apptetite is nomal, urine color is normal, no fever, no joint pain.

He is just tired. And as a matter of fact, the Empire discharge nurse just called us to see how he was doing and I said "well, he's exhausted, is this common with IVIG? I heard her tapping the computer, I knew she was looking it up (Honesly, I could do the same thing, but I figured, "Hey, I have a nurse on the phone, why not ask my questions, right??". So she looks it up and she mentions "does he have this side effect, does he have THAT side effect?" I simply said: "no, he's just tired". She said "Well I have given IVIG to many persons and some of them do get quite tired afterward. It's not a vey common reaction but it does happen"

She then asked me if we have a followup appointment with his doctor and I said "well, I put in a call with his neurologist today but so far no one has called me back"

So I guess we'll put in another call tomorrow. We also have to find out about home infusions.

So if any of you (if you can remember way back when you had your first round of infusions..... did it make you exhausted afterward AND FOR HOW LONG?????


thanks Lupin and thanks to anybody who can give me some info.

Melody

Side Affects
 

Melody,

My first rounds of IVIG I had 5, one every other day..... for the next two weeks I felt like I'd been run over by a truck..... also, blood work showed a drastic drop in whtie blood count (which is strange cause its supposed to do the opposite) but my doctor didnt seem too concerned.... when I started on once a week infusions the tiredness would last a couple of days, but mentally I felt a lift right away... and eventually they got easier to tolerate....

Again, IVIG affects everyone very differently - I'd call your doctor just to let him know whats going on.....:)

Thank you, Thank you, Thank you
 

At least I know this is not some unusual side effect.

He took a little nap. He ate a good dinner and he's sitting inside watching tv. He doesn't take long naps or anything like that. He just doesn't feel up to going to the gym and for HIM, that's really something.

When do they take blood after the first 5 rounds of IVIG??? No one has told us anything!!!!!

I'll call the neurologist tomorrow and hopefully they'll make a follow-up appointment for him.

Again thanks kmeb, hope you're doing good too!!!!

Mel

Ivig....
 

Hi again Melody,

My doctor orders blood work and requires me to see him every 3 months on the IVIG - but ordered it after the first rounds I think to see what effect it was having...... (I dont know if this is the standard - but bloodwork is essential because the IVIG can affect many aspects of your body)

My treatments are on hold right now 'cause I'm still having testing (which is taking forever) for amyloid - but I do notice my legs ache when they didnt while on the treatments....

Some people, like Dahlek had mentioned - notice an immediate improvement, others less, and of course- it may not help at all... as the patient you will probably notice it yourself if there is a change - and my neuro checks my strength etc. when he sees me........

ALso, sometimes the docs order the home nurses to take blood instead of you going to a lab - several times I've had to go to a lab anyway because by the time the shipping company picked up the blood and it was delievered - the blood had congealed and the results were skewed..... so I"d ask if your home agency does do the bloodwork how quickly they get it to the lab...

Tell Alan were thinking about him :)

Wow, I see where this is all headed. Going to labs, taking blood, home infusions. Never really had the whole picture.

Since Alan did the IVIG thing, like I indicated in my preivous post,he is tired. But today, he just got up and had his breakfast and will now go out and make a wash. I just asked him (it's 9:30 a.m. right now), I said: "Alan, compared to yesterday, are you a little bit LESS tired?" and he said "actually, yeah, I feel a bit better" So maybe this tired thing is weaning itself along and perhaps one day he'll go "I'm going to the gym".

I had hoped to get a part time job when the weather gets warmer. Now I have no clue if I could even get hired, but with all this home infusion thing, going to appointments, I dont' see how I can look into any part time work.

At least for now. OH welll, I can dream!!!

Melody

Being tired is not...
 

unusual at all after infusions. And the extensive 'introduction' Alan had, combined with all the 'keeping still' that a hospital entails, would wear a person out. Nowadays, after my infusions at home, I'll take a 2 hour nap and be just fine after that.
I attribute the tiredness to the hefty dose of pre-meds I take prior to the infusions. After that, I'm fine until it's time for more, about a week prior to the next infusion date.
Getting the blood work at a docs' offices or a lab IS better than getting the blood work taken from the home service. The blood test results aren't complete if it's drawn from Alan at home. It's usually once a month at first...the day before or a couple days prior to the next infusion. They do this to check if your #'s change for your favor as a result of infusions and also to check the stress they may put on the liver. Then tests are done every 3 months as precautions, to be sure all is well.
Home infusions are easy to do, Your meds are delivered the day before you start, and included should be the pump [usually a portable one you just plug in to charge], all the gloves and other stuff needed to get the line in, etc. The IVIG bags go in the fridge, you take one out an hour before the nurse is to come...so's its not COLD going in you and the nurse comes, sets it all up and anywhere from 3-4 hours later you're done and the nurse goes. She'll check the rates and adjust them, take the temp and BP at intervals and see all is going well. That's it! Until the next time....
I find the home service far easier than going to a hospital or infusion center as you don't have to go to and fro...wait while somewhere else, and just doze off if you want after, or go out if you feel well. I will be up to your doc tho to decide which way to go in getting infusions. And Alan, of course, if he feels he's getting some improvement after a few rounds.
If you planned of getting a job, by all means do so! He will be watched by a professional the whole time it's all being done....I've not had any reactions at all while getting it at home. It's a no-brainer!
Just look up the brand he's getting and READ, almost memorize, that brochure. While most address other medical conditions, the reactions and facts are the same for any use. Twice I've had reactions, the first a rash-fixed by topical steriod ointments, and the second-they don't know what happened. I've had infusions for almost 3 years...every month and there's no problem at all.
Hope this helps! - j

Thank you so much for the information. There is no way on God's green earth that I'm letting a complete stranger into my home while I'm not there.

Imagine Alan hooked up to an infusion pump, he gets tired, he falls asleep and there's a stranger in my home!!!

I've learned from past experience (salesmen, repairmen, satellite tv installers), to never let anyone in my home without one of us being in the same room. I can't depend on Alan being up and alert during his first infusion.

Maybe after a while, but honestly, I would never feel comfortable. I once had a delivery man delivery groceries to my house. (This was in my old apartment), The next day, someone came up and stole my son's bike from right in front of my door. The delivery man was no where to be found after that. I wish I could be Mary Poppins and completely trusting of everybody.

But that is no longer the case because of what people have done to me.

I am very cautious and remain so. I wish we still lived in the Leave it to Beaver (an old tv show from the 50's). People actually went to bed at night with the door unlocked. They left their front door opened during the day.

I can't imagine doing that anywhere anymore. Certainly not where I live.

No, I'll just wait until the weather gets warmer, Alan gets a few rounds of home infusion under his belt, he gets blood work, THEN maybe I can concentrate on ME for once.

Thanks hon.

Melody

Maybe I've been lucky?
 

But, I too was reluctant to let a 'mere person' into my house and 'stay'. I got a super smart, alert infusion nurse. All the comforts I've got and truly want to provide are a fresh batch of brewed coffee and I'll provide some sort of bakery stuff, which she may or not partake of... That's it...She's NOT gonna judge how clean or not your house is...Mine is NOT up to MY standards, but it's not a dump either? Ya know? The nurse I've gotten, well I am NOW ON HERpreferred patient's list? Whooee! I've passed muster w/someone?!!!! Believe me, we are now both trained to each other and it's a really comfortable relationship. She comes...does...and goes...we set up appts for the next month and...welll that's IT! In my area, my nurse probably travels at least 100 miles to and fro patients each day! It's amazing, as traffic in my area can truly wear down the teeth as you grind them!

What to DO? Well, be there for the first few...and then..that's what cell phones are for?! Call and check in...get answers etc. and go on with life!

These service nurses are usually Licensed, bonded, and insured...so there should be no problem at all! Suss it out on the net! To me, it's one of the safest, resources you could find in this day and age...

Hugs and DO IT! - j

Suss it out on the net???? What one earth does that mean? Is that an australian saying??? I do love how you talk!!!!

I know exactly what I'll have on hand when the person comes. MY MUFFINS!!!

I haven't heard from Alan's neurologist yet. I've placed two phone calls to her assistant's answering machine. It's a very busy practice and everything goes through Zoya, her assistant. Sometimes, she picks up but lately, it's the voice mail.

Oh well, when Dr. Goldfarb wants him to come in for something, I guess she'll call us.

Oh guess what I had done yesterday?? A bone density test. Ever have one of those? This is my third one in about 7 years.

The first time I went, the report said I had osteopenia.

The second time I went the report said normal.

Now yesterday, when I got up off the table, as I was talking to the people in Dr. Fred's office, the girl came over to me and said "oh by the way, you're normal". I said "oh, normal, as opposed to what? (I just wanted to be clear) and she said "well, abnormal". So I said "you mean I don't have osteoporosis or anything like that?" and she went: "exactly". So I said "wow, I'm almost 60 and my bones are normal, isn't that something??" And everybody burst out laughing.

So I have normal bones. My joints kill me, but my bones still rock!!!!

What a hoot!!!!!!

mel

OFF TOPIC...sort of?
 

UMM, err, Melody...did anyone advise you NOT to take any calcium 1-2 days PRIOR to the Dexa test? They should have. Just A thought as I went thru that all last month...It's a thing one forgets? I surely hope you were the perfect patient and had 'abstained'! I know I hate skewed/false numbers myself!
Hugs! - j

I do not take calcium. I did many years ago, but it constipated me, so I never took a calcium pill since.

I do eat a very heart healthy, diabetic healthy, ALL HEALTHY diet, consisting of fish, veggies, salads, extra virgin olive oil etc. We went to a nutritionist. I do take my B vitamins every day (thanks to reading on the boards).

Alan and I never, and I mean never eat any red meat. Haven't for years. Not that this applies to anybody else. We just started doing this years ago, then when we went to the nutritionist, she slammed it home with "if you can avoid red meat, please do so". and we laughed and said 'are you kidding, we haven't eaten red meat in years"

We eat poultry, in addition to the fish and when we want a dish of spaghetti, I use Dreamfields, which only has 5 grams of carbs.

Doesn't impact my diabetes, and tastes like SPAGHETTI!!! The sauce is full of lycopene, so that's healthy!!!

I'm a fish person. I could live on grilled salmon, filet of this, filet of that!!!

Alan likes the way I make tilapia.

Oh, I don't use a lot of salt. I do use Salt Sense which is 33% less than regular salt. But Alan uses no sodium whatsoever on anything and I don't cook with it.

So if my diet has contributed to my healthy bones, THANK GOD SOMETHING IS HEALTHY ABOUT ME!!!! It sure isn't my joints, not in this weather. It's hailing, sleeting outside something fierce. And yesterday it was almost 70 degrees. This weather is absolutely nuts!!!!!

Mel

Good, just read up tho...like blood tests...
 

esp for Alan w/the IVIG, things can ever so subtly skew? We DO NOT WANT THAT?

Diet sounds almost perfect, but, I'm no saint and no dietician! I do know where I 'could be more good/better' but....well, we are all human...

OK dear, WHEN are you going to start your own blog? Or have you?

I really do need all your diabetic recipies in one place as I live w/a type II er and at times really don't want to be, well, THE FOOD POLICE? As cats say, I'm due for a 'nap' now!


Good thoughts in a super way to you! - j

Trust me, my diet isn't almost perfect, It IS as perfect as a human can get after being obese most of my life. Our doctors are pleased as punch that, we are able to follow this eating plan. Alan lost all his weight. I'm amost to my goal. It's harder for me because I'm diabetic (I have a friend who can't stopping snacking at night, her sugar is always 265, she won't talk about it, she won't get the right meds). I've struggled with weight all my life. Finally the lightbulb went off in my head and I don't screw around with my diet anymore.

When you see NEUROPATHY and, I only have the beginnings of it, I DON'T WANT IT TO GET WORSE!!!

I will do whatever I have to do to maintain my health. And so will Alan. If that means, no more junk food, not too much of this or that, well so be it.

Ever watch the Discovery Channel on tv? I don't know if you get it where you live but they do these tv specials on obesity and my goodness, some people way over 1000 lbs.

It's heartbreaking to see someone so ill, with neuropathy, and vascular problems and they always say "I can't stop eating".

We are just thankful (even though it took us all these years) to get it right.

And by the way, I know what a blog is but WHERE CAN I DO A BLOG?? that you can see my recipes???

Let me know, okay??

Mel

there are different site that offer free blogs...but...you could start your own thread here. :D

Curious: I'm confused
 

What do you mean, I can start my own thread here??? This is a peripheral neurathy board, right? Is there a blog board too???

Or am I just plain dumb??? lol

mel

it is a pn forum...but you are more than welcome to start an "off topic" OT thread right here on pn. :) not all threads have to be just about pn. it ishow we all get to know each other better. like on the ms forum...we have a reality show thread.

or you can post on the social chat forum.

you have lots of friends here melody. plus countless people who just read the board who would love to enjoy your recipes. i know i have my muffin pan ready.....:D

Oh yes, I just noticed the social chat forums. Very nice people are on these boards. I myself use the computer boards from time to time.

I mean, who would have thought years and years ago, that we could reach out and help each other through tough times, learn stuff, learn about computers, host forums, etc. etc.

I myself host the Parent of Young Adults with Aspergers on the Delphi Forums.

Everybody needs help once in a while. And here comes Alan into my kitchen to grab one of my muffins. lol... Just out of the oven.

This time I made them with Pure Orange Extract and blueberries. He loves em. Not bad if I say so myself and they don't impact my sugar or my weight. I only have one a day and they are medium size, not the giant ones with 300 to 400 calorie laden ones you buy in the supermarket.

Nothing smells better than a batch of muffins when it's snowing outside.

So anytime you wish a recipe for anything I might have mentioned, just pm me and you'll be mixing up a batter in no time.

take care,
Melody

Oh, Dr. Goldfarb's medical assistant called this morning. Dr. is calling Alan on Monday to set up a follow up and his first home infusion.

This should be a hoot!!!!