I am so disgusted with the Neurology Clinic that is treating my husband. At each appointment the Neurologist always says "If you have any questions, please feel free to call" My husband had a PET scan on July 25th, I had ask at the place that the scan was done when we could expect the results. I was told in 2 business days. I waited 3 business days & called to see if they had result, of course I had to leave a voice mail message, with Jessie the Neurologist Assistant. No one called me back. In the meantime, the jerking & head pain has increased. I called again, leaving a voice mail message (with Jessie) asking if there was something that would relieve this problem. This was on a Saturday, which I knew they were not open, however, I thought maybe they would listen to the message on Monday. He had jerked so hard he bit his tongue, not to mention the head pain ( not constant, but at least 3-4 times a day). Again, no call. I called back on Tuesday, again I had to leave a message ( with Jessie). Finally, on late afternoon-Tuesday a nurse (Amanda) called, not Jessie, I was told she would ask the doctor & return my call. No Calls. I thought since the Neurologist was in the office only on Monday, Wednesday & Friday's I had better call again yesterday before the weekend. So I called again yesterday, I ask to speak personally to Jessie, couldn't do that she was on vacation. All this time I have been put through to Jessie voice mail. I just called to speak with Amanda, couldn't do that either, she was the only nurse there & would need to return my call. I ask to speak to the doctor, couldn't do that either he wasn't there today, he had taken a vacation day. And to make matters even more stressful, my husband is in a mood where he can't understand why he has so many shirts, he never wears them, & wants to give them to Goodwill. Of course he has no idea if he wears them or not. I guess on the bright side, he didn't look in my closet. I guess I should be glad that I had almost 2 weeks without any rants.
That is totally unacceptable. If it is not far (ours is an hour away), I would march myself and my husband into that office and demand answers NOW. And stay there until I got them.
Kandee, that is just horrible! You must have the patience of a saint! By the second phone call with no reply? I would have been parked in their waiting room! As frustrated as you are, keep calling every half hour if you have to. Express that you want an answer today! There is just no excuse for such behavior, and as the old saying goes the squeaky wheel gets the oil. SQUEAK LOUDLY
Is there not another doctor in that office who can give you the results and help your husband with his symptoms? If not can you call where the scan was done and explain that your doctor isn’t getting back to you and see if a doctor there can read you the results? I am not sure if it is the same everywhere, but even in my small state the results are all on computers for any doctor to access. If nothing else maybe a call from them would give your doctor the push he obviously needs.
I am not sure if these symptoms are new? But if his doctor isn’t helping him, I would go to the ER or at the very least change doctors. For me a good doctor is vital. We travel almost 2 hours one way to see ours. Well worth the drive! So frustrating! Best of luck~Nikki
Amanda just called back, she was very nice, however, she had no clue as to what we had spoke about on Tuesday. I refreshed her memory, since the doctor is not there today, she checked his desk to see if he had left any instructions. She couldn't find anything. I doubt very much if she has been the only nurse for 4 doctors this week, she even remembered to ask him. She is going to try to find out some information & call me back. The head pain & jerking are really nothing new, just have increased. In the meantime, at least my husband has retreated to the garage, where I am leaving him until lunch.
kadee, i understand first hand your fustration. i also put in a call to neuro on monday am as i needed to up the dose of a med he was on for the 'myclonic jerks/ sounds like yours has them now as well. so does Fgirl's husband. we are both on neurontin for them. anyway its friday! and nurse hasnt bothered to return my call YET. i will call them back today and say if dr is too busy to attend to his patients then we will be looking for a new one. ANd he needs to get a new employee who returns calls. i say what is on my mind. i upped the doseage on sat last 50mg, very small amount as it was weekend and its working well so far, to 150mg/in am. but still no call returns is unacceptable no matter WHAT dr. so take my lead and go to the ER with your DH and get them to get hold of eithr your dr or the one ON CALL for him. they have to have someone standby even if its one day out of office. divvi
Divvi, how weird...I'm going to call my DH's neurologist today to see about upping the dose of neurotin. When they gave it to us, they sounded like I might want to do that and it wouldn't be a problem. He's taking 100mg a day and I have seen some improvement, but he still jerks enough that it makes it difficult for him to do some things. But we take it in the evening per the neurologist; you take it in the morning? Does it cause him to be sleepy? We give the Seroquel at night, also. For the first time in a long time, DH voluntarily went to bed about 10 and stayed in bed...what a break to have some of the evening without watching to see what he's moved around, opened up, or dropped!
Mine's prescription is 100 mg neurontin. He's now taking 300 mg (in the evening) but the doctor said I could up it to 400 without checking with him again. When you do get hold of these doctors, ask how high you can go before you should consult with them... I gather that even the 400 isn't "high" by the standards of treating real seizures.
Kandee, I am glad she at least called you back. But, still unacceptable! My neurologist is fantastic, if I call his office he has always called me back within 2 hours. ALWAYS! I am with Divvi, I went through 4 neurologists before I found a keeper. Keep looking until you find one who is competent and actually cares! I also agree if you get no answers I too would take him to the ER. You WILL get your results and as she said there HAS to be a doctor on call.
As for the neurontin, Lynn isn't on it - but I am. I have taken 3600mg a day for years. I take it in 3 doses as for my conditions it brings the best relief. If just taking it at night isn't helping I would ask the doctor about upping the dose and spreading it out more. Good luck ~Nikki
Wow! You just gave me something to be grateful for. I always get a call back from my husband's nuerologist, usually on the same day. Sometimes it's the next day. He also calls w/test results as soon as he gets them. He will leave a voice mail if I am not home. Guess he is a keeper :).
To try to be fair to the neuro, messages may not be going through. He might be very upset if he knew what had happened. When you finally get to speak with the neuro, tell him exactly what has happened, and ask him how to prevent it from happening again in the future. If he tries to make excuses, or doesn't seem to be bothered, definitely time for a new neuro.
In the meantime, do you have access to a fax, or does your computer have online fax software? If Amanda does not get back to you right away, get the fax number (it may be on his business card if you picked up one of those) and put your questions about your husband and your concern over what has happened in writing; and be sure to address the fax to the neuro. It seems to make them VERY nervous to have faxes sitting around, out in the open, that make it clear the patient isn't being properly cared for. If you can, send a new fax morning and afternoon until you get what you want.
Kadee, I would call and ask for an e-mail address, then ask nicely by e-mail for the results to be sent to you right away by e-mail. If they have no e-mail address, I would take my husband and go to the neurologist's office and say that you need to find out the results of his test and you will wait until the doctor can see you. Even if half the staff is on vacation, the treatment you have received is not acceptable. Then, if the doctor is not in, then I would do as Sunshyne suggested. Of course, I'm impatient. That is why I prefer to go get in their face. <grin>
Kadee might like to do a combination, all at the same time. At this point, I'd be as "in their face" as possible, by any and every method possible. Her husband is suffering.
I just received another call from Amanda, she talked with another doctor at the clinic. He has increased the Lamictal, my husband takes for his Absence Seizures. She said, she has called the Imaging Center regarding the PET Scan, however, it is in the computer, but their fax machine is down. If you have a Neurologist that actually calls & leaves a message you are lucky. My husband has had 4 different ones & really there was only 1 that had an assistant that called in a timely manner. They had to let her go due to staffing changes.
Divvi, Briegull & FLgirl, I am interested, do you think the Neurontin has made a difference in the Myoclonic jerks? Do any of your husband's have head pain? This pain is so intense that sometimes I think he is going to fall to the floor. In the past I have thought the jerks & pain were associated with the seizures, however, they seem to have replaced the seizures and are much more frequent.
Yes, since he's been on a dose higher than 100 mg the headaches seem to have diminished a LOT. He likes to wear a cap to put pressure on his head, which he says helps the headaches.
Kadee your husband may be having the myclonous jerking assoc with AD as Fgirl Briegull and mine do. fgirl i would defiantely upp the dose with neuro asap! i couldnt get thru but upped it 50mg on the weekend and it stopped it cold within 30min. i am now giving at 5am BEFORE the am when his are worst at awakening. i have had no more so far. it starts up i will increase anothr50 mg but am going to ream out my neuro when i get hold of him. see if upping it helps if you have had some relief with 100mg a higher dose can actually stop them completely! til i guess they get used to the meds.:) i am so relieved this is working for us for now. its making him a tad more sleepy about 2hrs after i give and he naps a bit more but its worth it. by 3pm hes up and alert and pacing for his usual 4-6pm gaunlets:) so i am very pleased. i hope each of you get good results. divvi
Fgirl from my neuro he said give right before the episodes start but giving 2hrs heads start is working well. if yours has them am/pm maybe dividing it up will help..divvi maybe try the seroquel ealier in between?
What a terrible experience. Had one similar to that many years ago. One of our sons had a seizure disorder (he has cerebral palsy). He was a very troubled adolescent and was acting out (duh! big surprise). The neuro actually got so angry with our son that he refused to renew his prescriptions. I had to take him to the ER in order to get anticonvulscants. I turned that guy into the AMA. I was really steamed. I wrote a letter because I was in no mood to talk 'nicely' over the phone. As it was, I had to rewrite the letter 1/2 dozen times before I sounded half-way sane.
What are myoclonic jerks? Is this the same thing as the 'jerks' you all are talking about? What do they look like? Are they seizures?
The jerks my husband experiences are, he can be sitting in his recliner & all of a sudden his arm or leg will jerk up. Or his head will jerk, sometimes when that happens he bites the side of his tongue. It's almost like when you are falling asleep & feel like you are falling & jump, however, more violate. His has no idea when these are going to happen. The head pain that he is experiencing is like someone stuck him with an ice pick, the jerks & pain all seem to run together. He has had Absence seizures for about 8 years now, however, the jerking has started this summer. The jerking is different than any seizure he has experienced.
Thanks! Do they hurt? That pain in the head sounds horrible. Does he have AD? Mine has AD and is well into stage 5. He may be approaching 6 but I can't really tell. He's better on some days than others. Today, is not so good. Very little conversation. Can't remember anything at all. He never complains of pain and does not seem to know he has a problem. I asked him to subtract 7 from 100 and then 7 from 93. He got to 93 and then told me that it was too much trouble. He had a sheepish grin--sort of embarrassed--and I just said ok. He was a machinist and worked to 3200 of an inch tolerance. Now he can hardly tie his ow shoes. The next pair will have velcro closings.
I have a friend who described her situation as walking on pebbles. Has nothing to do with AD. She has a certain condition, not sure what, but he probably needs to see a podiatrist.
When the jerks are really hard, he does say they hurt. As for the head pain, it is terrible, sometimes almost drop to your knees. If he is walking he is very unsteady & needs help. My husband can no longer subtract 7 from 100. It's hard to see an intelligent man struggle with basic math. He can sometimes count to 50, however, cannot recite the alphabet. He could add & substract faster in his head than I could use the calculator. I HATE THIS DISEASE!!!!
Kadee, I had been reading up on myclonus a while back, and what you're describing about jumping when you're falling asleep -- that actually is an example of myclonus. So are hiccups.
We just assume we were drifting off to sleep, so when we jerk, no big deal. We think we have control over it. Hiccups, of course, seem harmless since you're confident you can stop them by holding your breath, but some people have had them for months, or even years, and it stops seeming harmless in a big fat hurry.
I can easily imagine that the more violent jerks could get to be painful, as well as terribly scary.
Been to 2 Podiatrist and one said it was the bones in his feet at the joint where muscle pads shift and the bones touch the floor. Nobody else expresses an opinion. I have 2 cousins with the same complaint and they don't know what causes if either. I know it has nothing to do with AD but just mentioned he is taking the Neurotin for this condition. lmohr
Of course, the neurologist never called me back today...and I was just trying to get through to the nurse practitioner that we worked with the last time we went. I'm considering giving him a 100 mg dose in the morning as well as the evening as these doses are still small and she said we could call to have it increased. My DH's jerks aren't as violent as what some have described but they are more frequent. It's usually his arms that jerk...enough to spill coffee out of the cup or to feel myself if his arm hits me. I have noticed that his stomach muscles also are jerking. But I do think that the neurontin has reduced their severity and frequency. They used to be just awful when he got up at night to go to the bathroom---then he could hardly stay on the toilet seat as his whole body seemed to be jerking. We really haven't seen any bad side effects--he still paces pretty much all day and then sleeps well from 11 to 7..usually.
Fgirl, we seem to be experiencing similar MJerks them in the am upon awakening mainly. he seems quite startled when it happens and i do believe they can be painful as it was described to me by neuro as brain spasming. they can be slight to more severe and he will drop anthing that he has in his hand. i usually have him remain in prone position, ie couch or bed with his head up with pillow to if it would become more serious his head is protected. so far the 150mg of neurontin is doin gthe job. this is very low doses, like the i believe nikki says shes on 3600mg a whole lot more. i know the dosage is very high sometimes and seems to be tolerable. i hate this MJ and its made me quite neurotic myself. so i will avoid at all cost, and just keep increasing the dosage with dr approval to keep it at bay as long as this meds work. i know kappra he was also considering but i said min dose so we went with neurontin. i am glad its working some for you too, i would at least call the pharmacsit and discuss the dosage when is best? isnt it a pain in the *** these neuros think they can not call back? i am livid as well. mine didnt call back either. i am emailing them though. this new neuro is the most qualified one at our med complex with all the other dr so i really dont want to be too nasty but i am going to complain. he seesm to be up on AD.... i know exactly how you feel...poor buggers! :) divvi ps try to give 2hrs prior to when you think they most happen??
Thanks for the info... I will probably keep him at the present dose and hound the neurologist on Monday or see the pharmacist---that's a good idea. I think they are as knowledgeable as anyone is about meds!
When it comes to meds, the pharmacist knows more than the doctor does about things like dosage and interactions. They will help with over the counter meds. Tell you which ones they like the best. But they won't prescribe.