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#21 LoveMyHubby

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Posted 15 November 2013 - 01:08 PM

UGH! I'm so mad I could scream!.... Sorry, had to get that out.... We just got home from hubby's appointment. It didn't go well at all. It started by hubby calling this morning before we went, he was told this morning it was only a consultation visit. I can understand the need for the doctor to see him and get to know him a little before actually diagnosing anything but hubby didn't like the idea of paying to be seen, just to chit chat, if you know what I mean... Anyways, we get there and I KNEW I should have gone in with him, though I can understand wanting to go alone b/c of course, the kids are with me 24/7... But I always ask questions he doesn't think to ask or doesn't WANT to ask.... To summarize, the neuro doesn't think he has PD, he thinks he only has tremors b/c hubby can sit still (which hubby can do when he puts his mind to it!!), AND he's not over 50!!! As soon as my hubby told me that I told him he needs to see another neuro. That statement alone makes it obvious he doesn't believe in early onset PD. The only supportive thing he had to say was that he was worried about hubby's hands and legs cramping up but even then he thinks it's a muscle disease which at the moment I can't think of the name of it but I'm sure you know what I'm talking about. Is it Muscular Dystrophy? Anyways, I can NOT believe he just thinks it's tremors! HE said EVERYONE has tremors, just some are worse than others.... You know, as upset as I am right now, it probably was best I didn't go back there..... But really, if it was just essential tremors why does he have SO many other symptoms??......... He prescribed him beta blockers and wants to see him in a month... He told hubby if the blockers don't work then he'd have to take other actions.... We paid a $50 co-pay, which IMO is worth it just b/c we're doing what we need to do, we're taking the steps to figure this out and DO something about it but hubby feels it was a waste of time and money, he's in a bad mood and is very pessimistic, more than usual..... I need advice. Should he try the blockers? Should we try another neuro??.... I'm so stressed right now....


And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#22 sarahjo

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Posted 15 November 2013 - 01:20 PM

sweetheart, I can so relate I have a husband just like that, but I would say try anything that would make ur honey feel better, and give him space to calm down, it is frustrating, Did you get to meet the dr. at all? what does your honey say about going to a different dr? Some men are stubborn they work so hard for the money for their families, and to spend it in five minutes and not get a definite answer is frustrating for them also.  Try to be understanding fix him one of his favorite meals, offer him something to drink etc. Remember luv this is on his shoulders and you should try and spoil him a bit, this is one of those moments you shake your head and let him vent and don't add your opinion. (as hard as it is) unless he asks. Ask him if he would like to try another dr. or if he has faith in this one. If not then go from there. Best of luck, Sarahjo



#23 Daven

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Posted 15 November 2013 - 01:28 PM

LMH,

 

I understand where your coming from.  I made a post in another thread (http://forum.parkins...nea/#entry62846) for someone who is in a similar situation.  It's rough being in limbo land, but at least the doctor isn't blowing your husband off.  He definitely sees something is wrong, he's just not sure what it is yet. If it were me, I would take the prescription hoping that it works.  If it doesn't, he can at least check off one thing from the list of what it is not.

 

Dave


Edited by Daven, 15 November 2013 - 01:41 PM.


#24 LoveMyHubby

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Posted 16 November 2013 - 07:14 PM

I know it's a process but just the fact that he doesn't think people younger than 50 can have PD makes me think he's not the right neuro for us. Even hubby told me there was a certain "air" about him, like he was thinking "Now what does this guy have wrong with him?", know what I mean? Some doctors shouldn't be doctors if they don't really want to help people. I can understand the elimination process but for a doctor to completely ignore or outright disagree with what a patient is telling him is wrong..... On the bright side, after calming down and discussing it a littler more, hubby is willing to see another neuro. There is another we can see, he's a little further but from what I've heard he is experienced in PD patients and I haven't confirmed it yet but I "think" he diagnosed a local with YOPD, so if he's the right neuro who saw her then he KNOWS there is such thing as YOPD.... I just hope our doctor will refer him.... In the meantime... I read the beta blockers that were prescribed to hubby lower blood pressure and now I'm not sure he should take them b/c hubby has lower blood pressure than most people. AND he's not suppose to.... basically he can't work while taking it... And that's something else hubby didn't like, the doctor just shrugged like it wasn't his problem... If hubby can't work while on meds, he won't take them.... I'm going to try and get our doctor in touch with the other neuro Monday.... Maybe that one will take hubby more serious, and I suggested to hubby to write down every symptom he can think of before seeing anyone again. I didn't think of it before....


And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#25 Daven

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Posted 16 November 2013 - 10:43 PM

LWH,  I definitely understand about a doctor showing disinterest or just to busy to really pay attention.  I think my first MDS cared and wanted to figure out what was wrong with me, but he was very busy when I saw him.  My appointments last about 5 to 10 minutes, not enough time to figure something out.  Good luck with the new doctor.

 

Dave



#26 coacht

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Posted 18 November 2013 - 11:10 AM

LMH,

Why were Beta Blockers prescribed? I talked to a retired MD, (pathologist) whose wife had something similar to PD. He asked me if my impression of neurologists is that they are mechanical, (my word not his, can't remember exactly what he said). They don't tend to have a good bedside manner and are very matter-of-fact. Have you read the YOPD paper on the website? You are on the right track to write down symptoms. My wife had most of them at the time of her diagnosis. Dystonia started soon after the diagnosis. She had tremors in her left hand, micrographia (small handwriting), shuffled her feet and was stooped over, moved very slowly, had sever anxiety with panic attacks, hypophonia (soft voice), etc. Hang in there, neurologists use a diagnosis of exclusion often. Look at another neurologist if need be and make sure you take a list of questions and don't leave until they have been answered.

#27 LoveMyHubby

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Posted 18 November 2013 - 05:14 PM

The beta blockers were prescribed for the tremors. I don't think hubby is going to take them though b/c he won't be able to work while on them and caring for his family is his first concern, which makes this whole thing extremely difficult.... See, his boss wants hubby to take care of his health but at the same time he won't be able to do that and work, from what I can see... I just called our doctors office and asked them to refer hubby to the neuro we would like to see. We'll see how that goes....


And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#28 LoveMyHubby

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Posted 21 November 2013 - 10:15 AM

Appointment with the new neurologist is set for the 27th. I'll update then. :)


And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#29 LoveMyHubby

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Posted 27 November 2013 - 04:49 PM

Today's appointment went MUCH better. The wait was awful, aparently just one of those days, but the doctor was great, he acknowleged our concerns and said some of the symptoms did sound like PD. Hubby went ahead and told him he had seen a doctor before who said he had PD and I'm glad he did, I think it supports the possibility of a future diagnosis. After insurance approves, they will set an appointment for some testing. It's possible hubby may have other things going on as well. Anyways, he will currently be treated for essential tremors and they'll go from there. And what was prescribed to him will NOT lower his blood pressure. I'm so glad hubby agreed to see another neurologist and that we were able to see this one. It'll probably be January when he's seen again. Thanks everyone! Hope you all have a great week. I'll update again later. :D
And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#30 LoveMyHubby

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Posted 06 December 2013 - 11:43 PM

Got a call today, hubby's appointment for testing will be on the 17th, then his neuro will see him the following Monday. Just thought I would share.

 

OH! So, hubby has been taking his meds at night before bed like the neuro suggested. The following day of taking the first dose, he felt AWFUL. Normal side affects but still, he felt so bad that his boss told him to go home at lunch time. He couldn't even eat lunch, and he slept most of the rest of that day. Mind you, he was prescribed the lowest dose. It was suggested to him that it may be because he has so little fat that the meds affected him so strongly. So that night, he skipped that dose to let some of the meds get out of his system. He felt better the next day, thank goodness. So, then, that night after me suggesting half a dose, he took half a pill which was hard to do b/c it's so tiny, lol. Anyways, it was MUCH better. Still a tad termor in his hands but he was able to work without any problems and was actually pleased to be taking something. His body is getting used to the half dose and the tremors are becoming a little more noticeable again so soon he will be taking a full dose again now that he's had time to adjust. Sorry if that came out all drawn out, lol. I'm just glad he's finally taking the steps to help himself. :) I'll update after his appointment Monday. Hope you're all doing well!


And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#31 tracyrose

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Posted 27 December 2013 - 11:50 PM

I can testify that the meds are a life saver.. they won't correct the emotional difficulties.. but in one week my DH was dressing himself, in 2 weeks, feeding himself and in 1 month he danced at our wedding.. I wish you great things. Tracy



#32 LoveMyHubby

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Posted 09 January 2014 - 04:08 PM

Hey everyone! Hubby had his follow up visit this morning. Kind of good new bad news kinda visit, lol. "Bad" news, the neuro agrees that it is indeed early PD. Good news is this was only hubby's second visit with the neuro so what a quick road to diagnosis!!! We really do love this neuro, he's really considerate, understanding, patient!, and really seems to want to help. He does want hubby to stick with the Primidone and also prescribed hubby today with Azilect. So, we'll see how that helps. Hubby has been taking a whole pill for close to a week now, it still helps as long as he doesn't have caffeine, lol. Overall, we are very happy. I've heard so many stories about how long it took to get diagnosed and I was dreading all the appointments with little results, which could have made hubby want to say forget it. Oh, and he still has to get blood work done, somehow that was left out when he got the other tests done, which we found out today looked normal. Anyways, I wanted to share the news. It really is a relief to have gotten the diagnosis already.


And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#33 Preacherlady

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Posted 10 January 2014 - 11:37 PM

Hi, LoveMyHubby,

 

I am so glad he is finally getting some care. My PWP first started showing symptoms in 2000 -- his right hand was curling up and he couldn't play the piano as he used to. He had all kinds of tests over several years. He even had acupuncture for his arm! He was so tense, I sent him to a massage therapist. Of course she can't diagnose anything, but she suggested that he see a neurologist about the possiblity that he has PD. So finally he was diagnosed in 2006.

 

The important thing about starting the meds is that they enable good movement and control for the disease. See if there are any exercise groups offered for PD in your area. My hubby's doctor referred him to a PT program that uses "BIG" therapy. The exercises over emphasize the movements  so that the muscles and nerves can find new ways of talking to each other. When my PWP was going he did very well. There is a book with these exercises called "Delay the Disease . . ." which you can order from Amazon : http://www.amazon.co...inson's disease

 

Exercises are useful for keeping the body moving but also relieving stress and helping the PWP feel they are participating in getting better. I have seen this with my husband.

 

I'm so glad you and your husband are making progress.



#34 LoveMyHubby

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Posted 21 January 2014 - 12:35 PM

*sigh* I'm feeling a little down. It's hard being strong.... Hubby told me last night that he feels he's developing dementia. I think it's more of a fear at this point, but when does memory loss turn into dementia?... His memory problems seem more like short term memory, and very often. He said every single time he goes to his truck to get something he has to stop and backtrack what he was doing to remember what he needed.... He is also becoming more and more moody, having what I call "fits" over the slightest things. It can't be good for our kids and that's another worry I have. But maybe knowing daddy has PD (which they do) will help them understand? He has been feeling better since starting the Azilect, the cloudy head feeling is better he says and his balance has improved BUT the Primidone is not working like it was and he doesn't want to keep increasing the dose or taking it twice a day. By something he told me last night, I think he now regrets waiting so long to finally see a neuro. I told him I tried to get him to go but I can't make him, you know?...

 

I have too much going on and it's catching up with me and now my health. Getting more personal, I'm dealing with my weight. I was on a great routine, losing weight, feeling good about myself then got sick and haven't been back on track since and that's been a few months ago. I've probably gained 5-10 lbs which can really make a difference and cause problems. I'm fatigued, tired no matter how well I sleep, irritable, worried, stressed. I finally bought some vitamins that are helping some but I really need to get back to exercising.... And what I haven't shared but want to get out of the way is I have been having issues with random muscle spasms all over my body, my hands have been shaking for a few years now (I trained at a salon for a week and my boss asked me why my hands were shaking, all I knew to say was I didn't know, that they just did) and are getting worse but especially my left hand and thumb (more of an occasional twitch) and I feel dumb b/c I forget often. When I was in high school and even now I just jokingly tell others I'm "blonde", which I know is horrible..... The muscle spasms are starting to worry me b/c they're happening more often, and b/c of that I feel I'll have to see my doctor about it soon..... Sorry for the "vent" but I had to let it out, I don't have anyone else I can tell this (about hubby) to that actually understand what's going on. His next appointment is in March...


And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#35 PatriotM

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Posted 21 January 2014 - 02:43 PM

My neuro says that taking medication does not alter the course of the disease.  So, his waiting to see a neuro probably hasn't had any effect on his PD.  As for the short term memory loss, that seems perfectly normal for almost all neuro degenerative diseases.  Like probably everyone else on this forum, I have moderate short term memory loss and I have just learned to deal with it.  In fact, I write myself notes and use a lot of other mental crutches, but unfortunately frequently forget to take the note - LOL!  All you can do if laugh about it!

 

As for your muscle twitching, that's often caused by low magnesium.  Have your doctor check for that.  It's amazing how magnesium supplements will stop those twitches!



#36 LoveMyHubby

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Posted 21 January 2014 - 05:42 PM

That's funny. So many times I've written a grocery list and forgot to take it, I put them in my phone now. You really do have to take a humorous view to things like this or it'll really take a toll. It's hard though, and I don't want my hubby to feel like I'm making fun. He's gotten a lot more sensitive lately. :( We just take it one day at a time, sometimes one moment at a time....

 

I'll mention magnesium to my doctor, thank you. Those little twitches can be a real pain in the rear, especially when it's my eye lids, lol.


And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4

#37 coacht

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Posted 22 January 2014 - 09:57 AM

LoveMyHubby,
What other drugs besides Primidone is your husband on? I would think that Primidone could cause memory problems as it is converted to Phenobarbital which is an anesthetic. the agonists Mirapex and Requip will do that the same as several other drugs. that would be a concern. I have had tremors in my hands when stressed out, none now. Try the magnesium and potassium supplements and see what they do for you. I would see a doctor though.
Coach T

#38 LoveMyHubby

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Posted 23 January 2014 - 01:19 AM

Aside from the Primidone, he is on Azilect. I'll let him know what you said. He's not liking that the Primidone isn't working like it was, the tremors are coming back despite increasing the dose. The neuro said he could take two a day if needed but hubby really doesn't want to do that....

I will try the supplements, and also see what my doctor says. I'll probably have to wait til payday before I can go. Til then, I'm taking a good mutlivitamin that's helping with my energy, and coconut oil. :) Thank you coacht.
And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. -Revelation 21:4




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