Just as a side comment, you might want to look at www.cpnhelp.com I suggest this because when I first developed my current symptoms around 8 years, I visited many different neurologists before the Mayo said MS. All of them diagnosed me according to their specialty. One of them suggested I had dyskinesia.
Willingtocope have you had success with the cpn treatment? If so, what kind? Thank you v, much
Post by willingtocope on May 29, 2014 6:16:52 GMT -8
I have had some modest success with the cpn protocol. Before I started I was an EDSS 6.5 and having a pseudo-exacerbation every 6 weeks or so. I got to know the local paramedics very well...they would have to come pick me up off the floor. No broken bones, but I was not able to get up on my own. In March 2013, I developed an infected lymph node on my back. After my GP cut it out, he left it open to drain and rx'd minocycline. I took mino for 8 weeks and EDSS dropped to 6.0. A bell went off in my head. Although I can't find a doctor who buys into the Vanderbilt Protocol, I started taking N-Acetyl-Cysteine in July 2013, and added Doxycycline, and Roxithromycin early this year.
In 9 months, I've only had 1 fall back in November (actually, collapsed getting out of bed...not an attack) and only one pseudo-exacerbation over last weekend (BUT...I didn't fall...I stood, but couldn't walk). In fact, the problems last week might have been the result of my first Flagyl "pulse" (die-off of the CPn bacteria) and not actually an MS attack.
So...too soon to tell, but so far its the only treatment that stopped progression.
Post by peacewillcome on Jul 1, 2014 16:11:33 GMT -8
willingtocope I meant to answer this and then life overtook Has your neurologist been supportive of it? What kind of functional improvement are you noticing? I just wondered what was it that made them finally decide on the ms diagnosis. They have told me i have a problem in the basal ganglia which controls voluntary and involuntary movement. Did they ever tell you this? I am still trying to get a proper dx Thanks so much
Hey, I haven't read the whole thread yet but I'll come back and do so. I was just going to post something quickly and come back in the morning to read here since I've been gone a while but this caught my eye.
I was just diagnosed with a rare movement disorder a couple weeks ago. Its been nearly 3 years now trying to find the cause of my neuromuscular symptoms. I was diagnosed with Primary Myoclonus, I'm having a hard time learning about it but what I have found made my jaw drop since it described me perfectly. I was started on a low dose of clonazepam to help with spasms and involuntary jerking movements, and I already take norflex for muscle spasms from my genetic disorder. I've noticed a little help but not much yet with the clonazepam, I don't know if it works better after you've been taking it a while though? I had noticed whenever I was given valium for MRIs and medical procedures that it greatly helped my jerking and twitching so I'm hopeful treatment will help. Just the other day I nearly lost my nearly already dead cell phone. I say it has epilepsy and when it acts up say its having seizures again because it will just suddenly start opening and closing apps at random, whether its sitting completely untouched or I'm trying to do something with it and I have no choice but to wait it out if I want to use it. Anyway, I dropped/tossed it and it landed in the dogs drinking bucket. Luckily I fished it out and pulled the battery fast enough, stuck it in rice for 24 hours too. Doesn't seem any more broken than it was...
I started clonazepam, only .5 mg though and I haven't noticed much yet. I'm hopeful though because when I've been given valium for MRIs and surgical procedures it stopped my twitching and jerking.
I have a friend with general dystonia, she's been in a wheelchair for it her whole life. Since its generalized through her body botox wasn't an option.
I'm currently waiting for my Drs to find someone experienced in botox to help with my bowel, bladder, and sexual dysfunction thats caused by the spasms in all those pelvic muscles.
For me the symptoms have slowly increased over the years, and I also get muscle spasms from my genetic disorder so initally they were written off as being from that disorder. Then a couple years ago I saw a new geneticist who specialized in connective tissue disorders and he was able to tell me what symptoms couldn't be from my disorder, and started the ball rolling on figuring out what they were. There is still the possibility my movement disorder is caused by damage from my skull and neck due to my genetic disorder, but I can't afford to fly to see the only specialist who can conclusively rule that in or out.
I get tic like jerks, individual muscle twitching, large muscle spasms, involuntary jerking movements, and occasionally whole body or half body jerks that are accompanied by a buzzing type sensation in my head and through the part of my body that jerks. Only the small movements and twitching are repetitive, the big movements tend to have a certain amount of time between them and the next movement isn't identical so its not like rhythmic for me. I get really self conscious and with the big movements tend to follow through with more movement and make it look like it was all completely intentional lol. Sometimes I get so twitchy its like I'm an alcoholic going through DTs lol. Both physical and mental exhaustion make my symptoms worse, and they're always worse at the end of the day. I used to get so self conscious with my boyfriend that if I was even the slightest bit twitchy I'd keep my space, he didn't understand and thought it was about him that I didn't want to be close/cuddle back then. Years later we laugh together after some of the big ones, especially if we're laying in bed watching a movie spooning and suddenly my entire body jerks.
Wow lin, those twitches and spasms sound crazy! Three years is such a long time to wait to find out for a diagnosis but its good to hear that you can laugh about some aspects of it....
Post by peacewillcome on Jul 4, 2014 1:48:29 GMT -8
lin Lin, i have all sorts of involuntary movements. Myoclonus, choreathetosis, the worse are the severe spasms. I have found the botox and combo clonazepam is working to some extent but they are like seizures of some kind and last in varying degrees. The spasms have been so bad they have moved bones. They have told me i have some sort of problem in the basal ganglia area of the brain. For me the odd movements seem to develop if i move my arm or shoulder the wrong way or do two dofferent movements ay the same time like try to walk and talk, which is impossible for me to do. Or reach to the left. It is so amazingly frustrating affecting my ability to talk and eat and swallow as so much of my spasming is in the neck, throat and facial area. Next week i go for a swallowing assessment What are they doing to treat you? Have they told you the cause?, I am so grateful yo meet someone else who has this horrible affliction.
I've had the spasms move bones, but I also have a genetic connective tissue disorder that causes my joints to be incredibly unstable. It also causes muscle spasms because my muscles are affected by the underlying defect, and overworked trying to help stabilize my joints. So I've had spasms that pull and disloacte joints. The worst is when my back spasms dislocate my ribs because its so incredibly painful and affects my breathing. I've been able to avoid them getting that bad for a long time now, which is good because it usually puts me in the ER
I get individual muscle twitches, which may last anywhere from a few twitches to hours. Sometimes I'm kept up at night by an individual muscle somewhere that just will not stop twitching, its not painful its just annoying and keeps me from being able to relax to sleep. Once I was at the movie theatre and one of my quadricept muscles wouldn't stop contracting over and over and over. I kept rubbing and pressing on it in vain trying to help, because I couldn't concentrate on the movie. Again that wasn't painful, just annoying. Then little tiny involuntary movements that I aliken to tics, like my head can just jerk ever so slightly repeatedly. A lot of the time other people can't notice these tics happening which gives me comfort, as I get really self conscious. But most of the time when I ask someone, they had no idea it was happening until I pointed it out and they specifically looked for it. Its these sort of tiny tics that can start happening sort of all over my body that I referred to when I said it feels like I'm an alcoholic going through DTs or something. Again those aren't painful, just annoying and embarrassing. I get very self conscious. And even when its widespread it can vary from not noticeable unless I point it out, to where I'm in some sort of slight perpetual movement all over. It only gets that bad though if I have no muscle relaxers in my system at all, like running out of norflex for example and having to wait a day to refill it.
The larger muscle spasms and jerks are painful. And the jerks are even more embarrassing, like I said I tend to try to follow up the largest movements with some sort of purposeful movement in an attempt to make the entire thing look purposeful lol, but I probably just make it look worse. Those are the ones that are bad in the evening, worsening when I'm tired or physically worn out. They also increase when I try NOT to twitch or jerk (along with the above mentioned tic like movements), which I think is a result of me tensing my muscles to try to stop them, but only making it worse. Then I have the various spasm issues internally, like spasms that affect my bowel and bladder and sexual function. I'm technically still a virgin I guess, because I can't do penetration due to the spasms. Female medical exams are incredibly painful, and my GYN has found the muscles to be in a constant non stop spasm, which is why we are now discussing botox. However my neuro told me that the Primary Myoclonus doesn't affect those muscles, so where when I was first diagnosed I thought this wrapped up all the loose ends it still doesn't. I also get intermittent blurry sight that I have to just wait out, which is caused by spasms in the muscles controlling focus of the eye preventing me from purposeful focus.
I have stenosis from cervical disc bulging with my C5 pressing on the thecal sac but they currently don't believe its symptomatic since I'm not having radiculopathy. But I do already have peripheral neuropathy from damage at the elbow so I wonder how I'll know if I have radiculopathy! And I have cervical instability at C3 and C4, so the concern originally was some sort of SCI but my MRIs have shown no lesions and my cord is clear. But I haven't had the right type of MRI to check for cranio cervical instability, or other possibilities due to my genetic disorder like acquired chiari. And when I've researched Primary Myoclonus, it can be caused by damage to that area where they can't rule out something going on. My new neuro stated how he wasn't a spine specialist, so he cannot help at all when it comes to that. Ideally there is a specific neurosurgeon Id need to see who specializes in these things from my genetic disorder but I can't afford to travel to see him, and I doubt he would accept my state medicaid so I also wouldn't be able to pay to see him. And I also still have issues with chronic headaches, a nonstop pain at the base of my skull that increases when I'm laying down, especially laying on my back. And laying down on my back triggers bad headaches as well. When I last saw my neuro he did occipital nerve blocks as a combination of test for and treatment for occipital neuralgia, and it HAS stopped a certain type of headache I would get, as well as scalp numbness and the sensation my hair was wet but didn't help the other headaches or the constant base of the skull pain. So I don't know what is the next step there yet.
When it comes to the Primary Myoclonus, they haven't told me a cause and it was my own research that found that it can be caused by underlying neurological damage. So far the treatment is to continue my norflex and the addition to the clonazepam. It hasn't been very long though, I literally was diagnosed about a month ago after a couple years of "I have no idea" from other neurologists and the various testing.
Although my disease is not of the dystonia type, it is rare and complex, affecting multiple body systems. It amazes me how much we as patients have to do our own research, and lead the doctors. Of course, we have the most to gain or lose fro our efforts, so it is worth it. The internet is a tool that empowers us to attempt researching our own conditions. It is wonderful to have this forum to exchange ideas about meds, symptoms, coping, etc. For both of you, lin and peacewillcome, I pray wisdom for your doctors, opportunities for better treatment, and courage to face the next day!
willingtocope I meant to answer this and then life overtook Has your neurologist been supportive of it? What kind of functional improvement are you noticing? I just wondered what was it that made them finally decide on the ms diagnosis. They have told me i have a problem in the basal ganglia which controls voluntary and involuntary movement. Did they ever tell you this? I am still trying to get a proper dx Thanks so much
Sorry its taken so long to respond to this. My internet connection went down on the 1st and I just got back on today.
I have NOT been able to find a neurologist or an infectious disease specialist in my area that will oversee the Vanderbilt Protocol. I have, in effect, been self medicated. I'm not happy about this. I am a chemist, but not a doctor. I don't think the meds I'm taking are dangerous but I would prefer to have sound medical supervision.
The functional improvements are: NO PSUEDO Exacerbations in a year. Only one episode, but it might have been a reaction to the first Flagyl pulse. I'll know in a week or so when I try another pulse.
As to why "they" finally decided it was MS...I've wondered about that. I had 4 different neurologists look at the same MRIs before I saw the guy at the Mayo Clinic. Each of the first 4 diagnosed according to their specialty (and, yes, one of them said "...there might be a problem in your basil ganglia...")...the guy at the Mayo (who is an MS specialist) said, "oh, the other guys didn't know what to look for". So, the MS specialist diagnosed me according to HIS specialty.
So, technically, I'm still looking for a proper dx. Based on my reaction to the Vanderbilt "...try this and see what happens..." test (N-Acetyl-Cysteine), I...me, personally...have dx'd a bacterial infection triggering MS. Treating it with NAC and combined antibiotics seems to have at least stopped the progression.
Post by peacewillcome on Jul 11, 2014 17:58:22 GMT -8
willingtocope W ow its hard to get a proper dx I always thought ms was easily identifiable by specific lesions, I thought i was the only one that got multiple dx,s from different neurologists. Did you ever have a spec scan of your brain? This is the test i just had
lin Lin your story seems so much like mine except substitute recurring spinal infection and arthritis for your connective tissue disease, at first they thought my movements were a sci at c4 or c5 where i have bad degenerative disk disease and arthritis but then that didn't seem to fit. Now they are centring on the brain though c5 c6 nerves were compressed. This all started after a car accident whiplash and shoulder injury,TWO years ago and still no final dx on what is going on, meantime i lose function.
I don't think neurologists really understand much of what they diagnose . Perhaps one day they will diagnose us as having sci too ..... Just of a different sort,
Its so sad that it takes so long to get a proper diagnosis. It had been around 2.5 years for me from the time my geneticist said nope thats not your EDS until getting the Primary Myoclonus dx. It took 3 years to get my genetic disorder diagnosed, and with that one I figured out what it was before the Drs did. I was referred to a geneticist at the University of Chicago, and it seemed like it took him 5 minutes to diagnose me lol. When he starts explaining what it was, I cut him off and said that I knew exactly what it was and had already researched it. And in the small community, I run into so many people who figure it out before their Drs do as well. But I was diagnosed in 2001, and I've seen a lot of changes since then with more people being correctly diagnosed, and it not being as rare as initially thought just misdiagnosed or ignored by physicians so much.
Post by peacewillcome on Jul 15, 2014 16:52:14 GMT -8
lin I am glad you got answers finally and hope that i will get some soon too. I hope you will let us know how things are going I see neurology again next seek and am hoping for some answers at least about my brain scan the low dose Clonazepam has helped my spasm but the main thing that has helped has been the botox Take care
Thanks. I'm really anxious to try the botox, especially since physical therapy hasn't helped my urinary and sexual issues and my medicaid wouldn't even allow the full required PT length either. I've been really sick though so I haven't followed up on things, I need to go through my voicemails and call a bunch of Drs offices that have called me in the last couple weeks and left messages. I'm hoping one of them is the UroGyn office about the botox, if not I'll probably call my Gyn and check up about it.
I have a genetic connective tissue disorder called EDS with neuro complications