Advocate for Right to Biopsy Slides

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Krackersones

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For some reason I ran out of space in my last post so I'm starting a new one. Anyway, the neuro also hinted that the doctor who did the biopsy and the doctor and UCLA may not get along and this might be the reason it is hard for me to get my slides. This pushed me to keep advocating for my right to them. I will but it sure would be nice to put this all behind me soon.She suggested taking balcofen and maybe nortryptaline (sp) for my nerves in addition to or in alternative to klonopin if I ween off. She said my .5 mgs of klonopin a day is like taking nothing which I think made her further think I was exaggerating my symptoms. She even mentioned that she thought I had OCD but admitted she could be wrong. I really see how the anxiety fulled by the symptoms makes things confusing to docs who can't easily see the twitches. Mine can be seen but just not always at the right times.She did not dismiss the theory that some infection might have triggered something that is irritating my nerve membranes. She seems open to me having more blood tests but did not push it. She really wants me to just put this behind me. That is what I want to do too. Now I just have to get past this self-inflicted breast pain so I can once again exercise to keep sane from the twitching and other things in life that must be coped with.I am starting to ramble. I hope I answered everyone's questions.
 
So glad things went well! Now take that darn pain medicine - OUCH!I'm really happy to hear that two years out, your tests are all great - what a relief :)
 
Blee,Thanks for reading and responding to my posts. I know you have been through a lot with your health and know the toll it can take. Btw, there was no delay in my getting my hands on those pain pills. I feel soooooo much better now.Krackersones
 
Congrats! I knew your EMG would be fine. It amazes me that the twitches never seem to show up on the EMG. We know they are there but yet the doctors can never see them. I just don't get that part. I'm glad everything went good for you and you know you are just fine.
 
Leslie,I think the fact that the twitches do not always show up for the neuros to see keeps this phenomenon hidden. When the neuros can't see them they tend to think we are exaggerating the frequency and we might be just experiencing normal amounts of twitching but are overreacting to it. This causes them not to write much about it in the notes or talk to others about it and we just become lost in the medical history to some degree. Oh well, worse things are happening in the world but it is hard not to make this observation given the number of neuros I've seen and the number of posts I've read here. I said it so many times but this board is just a miracle for helping you feel you are not alone and not crazy.Jennifer
 
Hey Krackersones,IAre you having muscle stiffness too since the doctor wants to prescribe Baclofen? The muscle stiffness in my hamstrings is getting really bad this summer causing lower back pain. Usually the stiffness subsides during the warmer months and returns when it gets really cold outside but not this year. I only take Zanaflex when I really need it but I might have to start taking it everyday now. If it continues to worsen I am going to have to go back to the neuromuscular specialist which will mean another full exam along with a NCV and EMG. They shocked the back of my left leg behind my kneecap so many times during my last visit I had tears in my eyes. I swore I would not go back unless I absolutely had to. I could feel a slower impulse in my left leg last time so I am beginning to think my condition is looking more like MS now. Much greater muscle stiffness, numbness, tingling and burning sensations in both legs and some occasional balance issues.Swift_TaySwift20
 
Swift_TaySwift20, it is good to know you are still around. I do get muscle stiffness but it is nothing I can't deal with and exercise helps. I have not gone more than a day or so without a benzo of some kind in my system for over a year and a half now so I think that has kept the stiffness in check. When the symptoms hit me the stiffness was terrible. I have very tight hamstrings and always have so I don't know what is part of this condition and what is not. When I am in my aerobics class and we do floor stretches I notice I have the tightest hamstrings in the class. When I am not trying to do some floor exercise, I don't notice the tight hamstrings. As for Balcofen, I have no idea why the neuro suggested it. I think because I have the hand thing (Swift_TaySwift20, you taught me it is called a "palmaris brevis spasm") which I am told is a cramp and not a twitch and it is the only thing the neuro ever sees, the neuro thinks my problem is cramps. I feel the neuros do not take my self report at face value. I do not think they mean to be dismissive but they see the anxiety and the symptoms, as they are described, sound exaggerated because they are not readily seen. Also, when they see the number of tests I have undergone and the number of neuros I've seen and the biopsy scar I have, they think I am going way overboard. I understand where they are coming from. I really do. But the symptoms came first then the anxiety not the other way around. I also think the symptoms are just impossible to accurately describe or be understood by someone who does not have them. Back to Balcofen, I know another women who was on this board a long time ago and she has twitched for 13 years and she takes ativan and balcofen for her symptoms. I think balcofen is worth a try. Anything that calms the nerve membrane or the muscles could help.
 
Swift_TaySwift20, it is good to know you are still around. I do get muscle stiffness but it is nothing I can't deal with and exercise helps. I have not gone more than a day or so without a benzo of some kind in my system for over a year and a half now so I think that has kept the stiffness in check. When the symptoms hit me the stiffness was terrible. I have very tight hamstrings and always have so I don't know what is part of this condition and what is not. When I am in my aerobics class and we do floor stretches I notice I have the tightest hamstrings in the class. When I am not trying to do some floor exercise, I don't notice the tight hamstrings. As for Balcofen, I have no idea why the neuro suggested it. I think because I have the hand thing (Swift_TaySwift20, you taught me it is called a "palmaris brevis spasm") which I am told is a cramp and not a twitch and it is the only thing the neuro ever sees, the neuro thinks my problem is cramps. I feel the neuros do not take my self report at face value. I do not think they mean to be dismissive but they see the anxiety and the symptoms, as they are described, sound exaggerated because they are not readily seen. Also, when they see the number of tests I have undergone and the number of neuros I've seen and the biopsy scar I have, they think I am going way overboard. I understand where they are coming from. I really do. But the symptoms came first then the anxiety not the other way around. I also think the symptoms are just impossible to accurately describe or be understood by someone who does not have them. Back to Balcofen, I know another women who was on this board a long time ago and she has twitched for 13 years and she takes ativan and balcofen for her symptoms. I think balcofen is worth a try. Anything that calms the nerve membrane or the muscles could help.
 
Swift_TaySwift20,You did not ask for it but my not completely informed opinion (because I'm not you and can't fully undestand your symptoms) is that you should not have another emg/ncv test. I think without progressive weakness, the test does nothing to further the neuros understanding of what is going on and only causes needless pain and anxiety. I think the best approach is distraction and symptom relief efforts. In other words, do whatever you can to avoid thinking about the problem which means avoiding doctors and taking what you need to take or doing what you need to do to control the symptoms. MS never comes up with the neuros I see. I don't bring it up and I have had a brain and lumbar and cervical MRI and there are no signs of MS. I guess anything is possible. Heck, I could get any disease on the Intenet at any point since I'm human. I am tired of worrying. Just my two cents.Jennifer
 
Jro,Trust me I don't want another NCV or EMG. I made an appointment with the specialist last time after the physical therapist I was seeing for my low back pain recommended it after seeing how stiff my legs were after weeks of stretching. I was only expecting an office visit that time and the next thing I know he is sending me back to the electrodiagnostic lab (torture chamber). I asked the resident doing the NCV how the results were looking after the repeated shocks and she said "it's borderline". Anyway I have complete control of anxiety issues. My problem is the leg stiffness is getting so profound it's affecting my ability to walk putting a tremendous amount of stress on my lower back. I will just have to take it day by day and go from there.
 
Swift_TaySwift20,I totally get the impression that you are making very rational decisions. I just get frustrated with the emg/ncv tests because the results don't seem to inform treatment. I had the ncv show severe abnormalities in sensory nerves and then was told by other neuros that they disagreed with the interp that it was abnormal and even the doc that thought it was abnormal did nothing specific to act on the results. So this is where my negativity comes from. I know you are in the medical profession and have seen some of the best docs so maybe you will get better results or at least better communication. And you are right to call it a torture chamber. I feel like those of us who have gone through it have a certain bond that can only come from that type of hazing. Let me know what you are able to get to help with the stiffness. If it is impacting walking, you must deal with that and I'm sure they have something that will help.Jennifer
 
I don't understand you want so many test.You don't have MS or ALS.What do you expect they will do?There is no miracle drug what ever the problem is.The only drugs available for those trouble are the same as PN,i.e. Klonopin, Neurontin, Lyrica, Cimbalta. You can try Keppra (used for epilepsy), Codeine.I don't want to see anymore any neuro unless a really new and different problem happens.Last time i went to my GP, talk a bit about this "crap" and said "give me that Lyrica" and that's it. 10 mn latter i was gone with the wind ... and with the prescription.You're fuelling your anxiety.By the way, 0.5 mg of Klonopin is really nothing. I doubt it is doing a lot for your personal BFS.And you're also taking it for a long time. Your brain is use to the drug and it should do now almost nothing. If you quit you will have withdraw symptoms.I was taking 1mg because of my tinnitus ... and it was doing nothing after months of use.
 
Glad your neuro went well! We all want to put this behind us and would love nothing more than to go back to the day before all this started. I wish doctors would be more understanding. I think its a defense mechanism. They don't know what it is or what causes and instead of saying that they make us out to be the bad guy. JRO- how do function on your medicine? My neuro gave me flexeril and I was loooopy, muscles felt weak. I stopped taking it! horrible stuff!
 
I do great on .5 mgs of Klonopin at night only. My new neuro does not think it is the best med to be on because it has an addictive quality but for my symptoms it really helps and I have not found a need to increase the dose but rather have decreased it over the last 18 months by more than half with the same benefits. I think it is worth a try. The effect is within an hour or so and you won't get "addicted" by trying it for a few days. Btw, I totally agree with your take on the doctors and how they deal with us. I hope things take a positive turn for you soon. Thanks for the info on flexiril. It is always good to know what others have tried and their experiences since we are a unique group that doctors aren't that familiar with.
 

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