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Stiff Person Syndrome
Hi all,
I was wondering if there's any chance that any other MGers are dealing with Stiff Person Syndrome. Probably not as its so rare, but as autoimmune diseases go together, I thought I'd ask. My doctor finally got back in touch with me (she's been in a conference in Jamaca with really bad Internet. She thought she had responded to me, but it never came through). Anyway, she confirmed I do have SPS and is starting me on treatment for it. I was just wondering what other people's experience with this might be. Jeff |
Glad your doctor got back in touch with you and diagnosed you. That is half the battle. As for any info, sorry, I can't help, but hope some comes along and helps you with more info for you.
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I came across SPS while doing some research on muscle conditions and asked her about it. She said it fits so she'd run the antibody test, but its pretty rare (I think fewer than one in a million). Only problem now is that the disease is so rare, no one has developed a treatment specifically for it like with Mestinon. The treatment options seem to be high doses of Klonopin or Valium to replace the missing GABA transmitters and if that doesn't work, then increase the dose. The silver lining here is that a few case studies have shown removing the thymus gland can improve Stiff Person symptoms, so I'm keeping my fingers crossed that that helps. So far they've only done it in cases where there's a thymoma or the person also had MG, so its not like there's huge research pool to draw from, but the results look promising. The MG may end up being a blessing in disguise. |
Many times, especially in the case of rare diseases, we have to be our own health advocate. Glad you figured it out for her.
Good luck with whatever treatment plan you decide on. Quote:
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MG and SPS
Hi Jeff,
I too have been diagnosed with both autoimmune illnesses in 2009. You are the first person I have found that have them both. My issues started with a very large thymoma and the initial symptoms were MG, but it didn't take long before the SPS symptoms started. No one at the hospital had ever seen someone have unexplained spasms and their body become stiff as a board. My neurologist only diagnosed MG. Even though he is suppose to be the "go to" neuro in the city for other neurologists to seek out if they can't diagnose a situation. It took the head doctor in the physical therapy facility which I was placed in after the surgery to remove the thymoma to diagnose SPS. My blood work doesn't show anything except striated muscle which my husband researched and found is a symptom of SPS. I not take Bachlofen to control the spasms and Valium to help keep me "calm" and not have a reaction to outside stimuli. You need to read up as much as you can on SPS. My husband has found a some information on the web but it really takes time and digging to find it. If you have any questions, I'll be happy to try to answer them but I'm still trying to come to terms with it myself. Stay positive (which is very hard to do). Southern Bell :grouphug: |
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Thats just the opposite of what I happened with me. I think my initial symptoms (going back over 10 years) were SPS. The MG, I think, generalized later, as it was only in my eyes initially. I find it hard to tell, sometimes, what's from weakness and what's from stiffness. All of the neurologists I've seen have commented on the muscle tightness, and then done little about it. The neuro that diagnosed my MG took me off all muscle relaxants and started cuting me down on klonopin. When I crashed and couldn't move, he dismissed it as a rheumatoid thing. He actually tried to make a joke out of it saying, "Thats a new walk for you, isn't it?" After that, I took the advice of my pain specialist and went to a doctor at a university center. Since my MG diagnosis, I've assumed that the trouble walking was from weakness and have been taking extra Mestinon. It wasn't until I started suspecting SPS and tried klonopin during the day that I actaully saw some improvement. I should have suspected something since I could always get up during the night and walk around the kitchen and the bathroom, though. I guess when you're barely awake and need a cookie, you don't consider the fact that you can walk. If you don't mind me asking, what treatment is your doctor using for the SPS. My doctor is an MG expert, but admitted she hasn't seen much SPS. She's increased my Klonopin dose to 4mg/day (which, according to dose charts is about the same as 80mg of Valium), but I find I don't get the benefit of the drug for a full six hours. After about four hours I start to tighten up, and can't walk between hours five and six. Honestly, I think I had bad pills and tried to get CVS to fill brand, but they didn't stock enough. They switched generics, though, and assured me that this one is better than what Walgreens had given me (the Internet seems to agree as many people with axiety disorders call the brand I've been on placebo). If these don't work, though, I'm not sure what to ask for. It seems like Valium and Mestinon are the standard treatments, but I noticed that Xanax comes in an extended release formula. If my problem is that it wears off too quickly, maybe this would keep a steady dose in my system. I'm a bit overwhelmed with this diagnosis. Now that I'm getting to the bottom of things, I'd really like to get my career (and my life) back on track, but its hard when I can't predict whether I can walk from one hour to the next and have constant pain. |
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Sps
Jeff,
I now take 60mg of Baclofen for the spasms, 30mg of Valium to keep me "calm" so that I don't have the reactions to outside stimuli that SPS causes, 450mg of Imuran (Azathioprine) to help control my immune system which is for both MG and SPS, and Prednisone - alternate 20mg one day/5mg next day. I cannot take Mestinon since the one time they gave it to me thankfully I was still in the hospital and it sent me to critical care ICU for a week on a respirator and close to congestive heart faillure. I have read another post on this site that said that if you can't tolerate Mestinon it probably means that you don't have MG. Don't know that for sure. My main focus is the SPS and trying to control the spasms. I still get really stiff especially my neck and back and have to lay down every afternoon to rest for several hours. Hope this helps you. Becky Southern Bell :grouphug: |
Sps
ln reading my last thread, I failed to say that I also have stiffness in my legs during the day. I feel pretty good in the morning when I get up if I've had a decent nights sleep and them start going downhill as the day goes by. Then after I lay down in the afternoon, I feel somewhat recharged. It doesn't help that most of the medicines that I take have a drowsy factor to them.
I take the Imuran because my body is still producting the foreign antibodies that my immune system is fighting even though I've had the thymoma removed. My neurologist can't explain why especially since I've had five rounds of IVIG and one plasmapharesis treatment. Becky Southern Bell :grouphug: |
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My doctor agreed that the klonopin isn't lasting long enough and agreed to try Valium and Baclofen. I'll let you know if I have any better luck with that. Jeff |
Jeff,
I hope you see some improvement with the Baclofen and Valium. As a side note, my initial neorologist also had me taking a high dosage of Dantolene along with a lower dosage of the Baclofen. Dantolene is no longer used I think because it is a very powerful drug and will have more of an adverse effect on your internal organs. In fact the pharmacy had to special order the Dantrolene everytime my prescription was renewed because it is no longer carried in their stock. That told me that it probably wasn't a very good drug to be taking. I have changed neurologists this year to one who is more specialized in MS and he was amazed that I was taking the Dantolene. He immediately increased the Baclofen from 10mg per day to 20mg and started weening me from the Dantrolene. I have completed that transition and have seen no change in my SPS. I'm so thankful that I found a better neurologist that maybe understands MG better. The other neurologists specialty is ALS so I was just an amazement because neither he or other neurologists he questioned had ever heard of anyone with both illnesses. I suppose it was good conversation over a cup of coffee. Good luck, Becky Southern Bell :grouphug: |
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I've played with the dosing on my own and settled on the full 20 of baclofen, and 7.5 of the Valium. Between the two, I've been able to walk almost normally (though I've been sore since I've been using a walker and a wheel chair for about two years and was only walking about 50% of the time before that). I tried taking a bit less since its hard to stay awake with it, but I start stiffening up again. I've found caffeine really helps, though. People at work keep seeing me walking around now and are asking me about it. It reminds me of the last scene in Dr. Strangelove where Peter Sellers get out of his wheel chair and shouts, "Mein Führer! I can walk!" After the fourth or fifth time I explained about SFS, I thought about just using this as a pat answer, but decided at least half the people at work wouldn't get the reference; so I still go into a detailed explanation as to what suddenly changed over a weekend. |
Jeff,
I'm so glad to hear that the new meds are giving you some relief and more of a normal life. I would be careful playing with the dosages without letting your doctor know or at least keeping a journal of what you are doing. I initially was given klonopin according to my husband who has been a lifesaver for me. He has been very involved with every aspect of my journey through hell and it did nothing for me either. Then the neuro changed me to baclofen and dantrolene and we saw a vast improvement with the spasms. I didn't start the valium until about a year after the onset of the illness. My doctor started me on a low dosage (10 mg a day) but I was still having issues with noise and response to outside stimuli. I literally could not go in a restaurant that the noise would make me so stiff I couldn't walk out. The few times I did go I had to be in a wheelchair. Then he increased it to 20 mg a day and things are much better although if I stay a long time in a noisey place I do start getting stiff. I also get stiff if I go to places like the grocery store where I have to walk alot. The sleepness is something that I deal with and between that and the stiffness/weakness I start feeling as the day goes by I have given in to the afternoon nap (which is not my nature at all). But I figure it is a small price to pay to be able to recharge and be able to somewhat enjoy the evening. I've learned you have to take the good with the bad since these illnesses have so changed my life. It really makes me feel so good that I was able to help give you an alternative that has helped you live a better life. Best of luck in your continued improvement. Please keep us updated on your progress. Becky Southern Bell :grouphug: |
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I don't really mind, except that everything seems to happen when she's out of town. I actually have the thymectomy setup for August 1st--which kind of annoys me now because right after I get the ability back to walk, I'm going to be laid up for six weeks. At least I won't be in so much pain from the SPS while I'm stuck in the hospital bed. Last time I was in the hospital, I complained until they finally gave me an IV of morphine to deal with the pain. Hopefully this time most of the pain will be from the surgery and I'll be on Morphine for that anyway. I go in next week for PLEX, since last time I had surgery there were breathing issues, and then the plan is to do it between two ribs. The neurologist said she's interested to see if the surgery helps both conditions or just the MG. As far as what you were saying about loud noises, I've always had a little social anxiety and hate going places with crowds and noises. I don't know if its just my personality or if the SPS has played a part in that. The Valium is actually helping with that some, too. I'm not sure if its because its helping the SPS or because its Valium, though. :wink: |
I can't tell you how glad I am to meet someone with the same illnesses as I have, even though I'm so sorry that you are going through it also.
I believe that I have a very severe kind of SPS because not only do I have the stiffness in my neck, back and legs, but I also have the response to outside noises and problems with other stimuli. Before I started taking the valium, I had fallen backwards at least a dozen times, hit my head on hard surfaces like concrete or tile floors, twice I split my head open and bled quite a bit. I had cracked my right collar bone and the one time I fell forward I broke my right shoulder. Each time it happened because I touched something that I was not aware of and I would become totally stiff, generally blackout and fall. I'm amazed that I didn't get a concusion from them but I had a CT scan after the last one and it was clear (it even showed that I actually have something between my ears which I had started to believe that there was just empty space up there!). After I started taking the valium, these episodes have stopped (cross my fingers) which is a blessing. I still am so afraid that it will happen again it has really played games with my mind. I have had balance issues from the start and cannot walk without a cane or walker for stabilty. I can't work any more which was hard to take because I can no longer drive and I run out of energy so easily. Beside the fact that the drugs have slowed my mind and the work I did was bookkeeping and administrative assistant. In reading some of my previous posts I realized that I incorrectly listed the amount of Imuran I am taking as 450 mg per day. It is actually 150 mg per day. Another brain cramp! I will think about you every day and send good thoughts your way. I truly hope that the thymectomy goes well with no adverse reactions. Mine was performed through my breastbone because the thymoma was so large. I was given morphine afterward (thankfully) and used every bit that I could. The pain was unbelieveable. Good luck and keep me updated on your progress. Becky Southern Bell :grouphug: |
My doctor considered the Imuran, but decided to try Cellcept instead.
They've been putting off the surgery, but now were considering it a last resort as meds helped breathing and eyes, but didn't help back pain or walking. They said breathing was the main concern and that was under control. Now the main concern is the Prednisone so they still want to go ahead with it. My neurologist is hoping we can lower the dose after surgery since its causing diabetes and all sort of problems. I'll try to keep you updated with how everything goes--unfortunately my laptop broke so I probably won't have one in the hospital. |
I'm curious as to why your doctor decided on Cellcept instead of Imuran. My ex-neuro did not discuss Cellcept, he simply put me on Imuran and I suppose I should have questioned why but I did not know about Cellcept until I found this site and saw that a number of people were taking it.
I have an appointment in the morning with my new neuro and plan to discuss the issue with him. Thanks for any info you can provide. Again good luck on your upcoming surgery. Becky Southern Bell :grouphug: |
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My neuro was actually not sure which to put me on as she has patients on both and hasn't come to a consensus as to which works better (she specializes in MG, and a few other neuromuscular problems, if you live on the east coast, I can get you her name--she said she has patients that come from as far away as Porto Rico). There's a pathologist who runs the apheresis lab whose taken an interest in my case. I think he was pulling for the Cellcept due to a promising study he read, so she decided to go with that one. |
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Just curious, did the thymectomy help either of the diseases? They're expecting it to help the MG, but my doctor said she's curious to see whether it helps the SPS. She said she found a few case studies where it helped, but doesn't know if those are the only people they've tried it in or if those are just the ones it helped. Thanks. Jeff |
Sorry Jeff but it did not help either illness. It may be a coinsidence, but things seem to go downhill after the thymectomy. At least I started having more of the SPS symptoms afterwards. I also didn't have an IVIG or phasmaphresis performed prior to the surgery which is something I have read that others had prior to surgery. The hospital I went to is suppose to be the best place to be for serious illnesses (or at least that's what I thought) but I have learned that it is anything but the best. It's simply a teaching hospital.
I had my appointment this morning with my new neuro and have learned that while he is actually a doctor, my ex-neuro is a professor and his idea of treatment is diagnosis and send you packing. Looking back on the whole experience, I understand that viewpoint completely. I'm also starting to believe, as my neuro does, that I only have SPS and not MG. My MG symptoms are mainly ocular problems (which I'm taking the prednisone) and some swallowing problems. These symptoms can also be associated with SPS which my husband found in his extensive internet research. As you can tell, once I get started talking about these illnesses I can't stop especially with someone who understand what we're going through. Becky Southern Bell :grouphug: |
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I actually made the SPS diagnosis myself. I first told my nurse that I'd done research and I think I have SPS, and she said she didn't think so. At that point, I felt a little embarrassed bringing it up with the doctor, but luckily my dad was at the appointment and asked about it. My neuro thought about it and said it fits, but its so rare she didn't want to get my hopes up. When the test came back positive, she called and asked how I had made the diagnosis. At first, I had been thinking that maybe the MG was wrong and it was just SPS, but the more I thought about it, the more I realized I really do have both. The eye, jaw and breathing really fit myasthenia; while the back and leg symptoms fit the SPS. My neuro still thinks I have rheumatoid issues on top of this because two doctors have opened up and looked at my joints and said they don't look like the joints of a 32 year old. The rheumatoid dept. at the hospital said I don't, though, which threw a monkey wrench into her plans as she wanted to keep me on TNF blockers as she thinks they have potential to help MG and wanted to use me as a test case as I was already on them. I had to be taken off them when the spondylitis diagnosis was removed. She wants another opinion from a doctor who specializes in RA or spondylitis, though. She thinks the reason the MG and SPS were missed for so long was due to the TNF blockers, even though they were doing a poor job on their own, in combination with other MG meds she thinks they have potential. I don't think she wants me on them if I really don't have the RA/spondylitis, but the orthopedics who performed the surgeries said that something really ain't right with my joints. Also, I had Rituxan at about the six month point on the Cellcept, and I got a boost from one (or both), but have no way to know which really helped. I really hope I don't get worse after the surgery, but I think its still worth doing as I can't spend the rest of my life on prednisone, if there's a chance of getting off it. If it hadn't already been scheduled, I might have delayed it and enjoyed my mobility for a while. Sorry I feel like I've rambled a bit. I just came back from having the central line put in and I'm still a bit dopey on the meds they put me on. I'm going to watch the Nats game and take it easy. Take care. Jeff |
You are obviously more educated than I am about medical illnesses and doing the research. That is why I am so thankful my husband has taken over the research, etc. from the beginning. He has taken notes every time we have seen a doctor from the start and we requested all of my information from the hospital after I was released which filled an entire paper box. He and my best friend could both get their PhD's in these subjects they have done so much research and talked about everything under the sun with each other.
One thing that has occurred to me (since my one brain cell has kicked in) is the difference in our timeline with these illnesses. You have been fighting this for ten years while it took me only 12 days to come full circle and end up in the ER. I was healthy on 4/30/09 and the next morning (5/1/09) I woke up with tingling and numbness in my lower right leg. The next morning I couldn't swallow. Several days later I noticed that my eye movement was slow while driving to work - looking from straight ahead to looking at the rearview mirror. By 5/8/09 the numbness and tingling had started on the right side of my head and over the next two days I started having weakness in my legs and trouble with my balance. On 5/12/09 I was in the ER with a host of neurologists trying to figure out what was going on. I believe their first thoughts were MS but a routine Xray of my chest and additional CT scan showed the thymoma. The next day I was told about the tumor and that I was set for surgery on 5/19/09. I have to admit that when they said I had a tumor my brain just shut down. I had never been in the hospital in my life and I was 54 years old. Looking back the stiffness in my legs started to appear along with the weakness shortly after I was admitted to the hospital. I really can't tell you exactly when because it was all such a new experience. I just know that I couldn't walk without someone helping me almost from that time period. I am thankful that if I am now cursed with this that it happened at a later time in my life but it's so hard to believe that for all these years I've been so good about doctors checkups and physicals and doctors telling me that I was just so healthy. You never know when that bus is going to pull right out in front of you. Here I go rambling and I have no excuse other than a common soul who has experienced the same things. Since everyone's eyes glaze over when I tell them what my illness is and try to explain what is happening to my body, you understand even more than I do about the experience. Best of luck, Becky Southern Bell :grouphug: |
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Becky, I'm going to try to make this short because I had plasmapheresis today and I'm exhausted, but wanted to follow up on your last message. I don't know if there's a juvenile form of these illnesses, but thinking back, my problems first started when I was in sixth grade. My hips started hurting so badly I couldn't walk properly and had to stop sports. My pediatrician said it was growing pains, but thinking back, I realize it was the start of SPS. It got worse very slowly, but by the time I was a freshman in college I knew that something was very wrong. Of course the student medical center thought I was just a head case and sent me for counseling, and the neurologist I was seeing at the time said I had some minor TMJ and arthritic issues. He was considered one of the best in the city so (stupid me) I continued to drive up to see him instead of going to UVA Medical Center, where they might have actually picked up on this stuff. I learned to do medical research when I was taking the preliminary courses for the AI program as you had to declare psych and then apply for the programming courses. I didn't get accepted into the programming part, which left me a psychology major until I realized I had no interest in it. I guess it paid off later when I knew what neuromusclar junctions and GABA was and was able to help piece this puzzle together. I had some MG/SPS related symptoms that sent me to the ER several times in college, but the ER never referred me on and eventually stopped giving me painkillers. I don't think any doctor I saw really took my condition seriously until I lost the ability to walk--except for my pain specialist who thought that I had received the worst treatment he'd ever seen, but admitted he was out of his depth and could only treat the symptoms. I just recently had a follow up with him and he couldn't believe the difference. I was actually able to move and he commented that I actually have a personality now (he said it more politely). I told him that its hard to even think when you are covering up constant 8/10 pain. I probably won't ever be totally out of pain, but honestly, there were times that the only thing that kept me going was that I wanted to prove the doctors wrong who were telling me everything was in my head. I wish I'd known 10 years ago that a couple $15/month drugs could have changed my life. Anyway, I need to go to bed before I keel over. Jeff EDIT: Oddly enough, I think SPS was one of the diseases I researched back when I was in college, but rejected it due to the fact that I was walking all over campus without falling (at least until my last year when walking became a day to day thing), and the pictures associated with SPS articles look more like someone with tetanus, which is also why my nurse told me she didn't think I had it (I don't want to scare you--due to the fact that you were older when you got it, it will hopefully advance slowly enough that they can keep it under control, I'm just afraid that I have something to look forward to someday). MG I somehow never came across in my research until my neurologist was looking for it and I based my search on his questions. I just wish he had asked the questions before clearing me for surgery, as I would have been able to warn the doctor they were looking for it. As it turned out, he used the fact that I almost died due to neuro-muscular blockers as diagnostic criteria. I later learned he does all the testing for the practice and he's the guy to see to be diagnosed, but not the doctor you want treating you. My sister thought he was a lab tech until I told her he's my doctor. He was partially correct in one thing, though. He told me that my legs weren't myasthenia gravis, but he dismissed it a arthritis and didn't look any further. My current neuro reluctantly concluded it was MG since I was told by her rheumatologists that I don't have arthritis, but she still wants another opinion. SPS never crossed her mind until I suspected it, then she began to wonder. My GP thinks that the SPS has destroyed my joints by holding them too tight, my neuro still thinks there's arthritis and told me to see an expert at GW or UVA, but she thinks TNF blockers can help MG, so I guess she has an ulterior motive for wanting me to have arthritis. I trust her, though, and she won't try to put me back on them unless someone can tell her definitively that I have arthritis. Maybe now that I have SPS she's changed her thinking...I'll have to remember to ask. Also, do you want to switch to private messaging? I've noticed our topic has become quite popular and my logic for leaving it public is that it may help someone who has no clue what they have and is trying to be diagnosed with something (like I was for so many years), but if you feel more comfortable discussing this privately, I'd understand. |
Jeff,
I have no problem with keeping our conversation on this website. I too have noticed that it is receiving a high number of views and I agree that maybe someone will see the things that we have experienced and explore with their neurologist the possibility that they too may have one or both of these illnesses. I believe that in reading about MG I have seen references to juvenile MG especially in babies. I've never read anything about juvenile SPS but again it's so rare and hard to diagnosis. I'm sure I've already told you that my first neurologist immediately diagnosed me with MG even though all my testing came back negative except for striated muscle which is a symptom of both MG and SPS. He was totally unaware of that and after my husband found an article about this and gave it to him he wanted another copy of the article several months later to give to his students (he's mainly head professor of neurology at the college associated with the hospital). That made me feel so comfortable trusting him as my doctor and I knew that I needed to find an actual doctor to go forward with my treatment. It's interesting that my new neuro told me this past week that my first neuro (being primarily a professor) is good at diagnosing and telling you to "hit the road". Which he finally did after over two years. I went for my three month exam and he pulled his chair up next to me and told me that he couldn't cure me or make me better and that he thought I probably had anger issues and it would be good to talk to someone, not a head doctor but maybe a social worker. I thought "heck yeah I have anger issues, my world has been completely turned upside down, no one knows for sure what is going on and you're surprised that I have anger issues". I have also experenced TMJ like problems about two years ago just out of the blue. My jaws starting popping to the point where I was in so much pain I didn't want to eat. That's when my old neuro started giving me the valium to help with my falling issues it also stopped the jaw popping. I don't have a problem with that now. I'm also concerned with the problem I might face with the muscle stiffness and it's effect on my bones and joints (especially on us "old folks"). When the stiffness starts to set in as the day goes by, I have a lot of pain in my lower back and legs. It doesn't help that I have two degenerative discs in my lower back from a fall 24 years ago down a flight of stairs. After being on prednisone for about two and a half years, I now have been diagnosed with osteoporosis which is one more problem to deal with and probably has done more damage to my back. Sad to think that the medications that I have to take to function are doing additional problems to my body. I hope our conversations are helping others. I wish I had been able to find someone with the same issues I had experienced at the beginning of this horrible journey and I encourage anyone who has questions about these issues to join in our conversation. Best of luck. Becky Southern Bell :grouphug: |
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Just curious, if you don't mind my asking, but how much Valium does your doctor have you on. I was on 10mg x4 and thought it was working great. My mom complained to the doctor that my personality has changed and I'm talking more (of course I am, I'm not in pain), only she isn't interested in the things I talk about so instead of being a good thing, this was a bad thing to her (all my coworkers like me more). Anyway, my doctor cut it to 5 x 4 which was horrible and I upped it to 7.5 x 4 which is still leaving me with spasms. I have an appointment coming up soon and want to get my med back to where it was actually working, but was curious what you were on, and if it worked? Thanks. Jeff EDIT: I'm thinking about sending my doctor an email explaining that the back and foot spasms are no longer under control like they were at 10mg and unless she has a better med for me to try to fill the gap (or up the baclofen), that I need to go back to the 10 of Valium since I was pretty well controlled. |
Hi Jeff,
I take baclofen (20 mg X 3) for spasms, valium (10 mg X 3) for the stiffness, prednisone (15mg one day/5 mg next day) to keep my eyes from locking in place and having double vision, and imuran (50 mg X 3) to help control the prednisone effects. We are in the process of trying to reduce the prednisone to a maintenance level of 10 mg every other day. I know that I probably won't be able to completely be free from it but we are going to try slowly reducing the dosage. I know that some of my former post have not been clear on the dosages I take but I checked to make sure these figures are correct. This combination has really seemed to work well although I still get stiff with too much outside stimuli and being cold. My X-neuro made the comment that he has seen patients take up to 80 mg of valium per day to control the stiffness which I can't imagine. I think he was just talking "Big" which is one of the reasons he's no longer my doctor. I really am reluntant to increase the valium because I can tell that it has had an effect on my thinking and remembering process. But I am thankful that it has helped with the stiffness and the other problems that I have experienced with SPS. I hope this helps. As I've said the SPS really is my biggest problem and having the spasms and stiffness under control is so important. Good luck, Becky |
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What I'm finding, though, is that it actually isn't the Valium doing the most good. I had been doubling up my Neurontin at night so that I could take less during the day. Once she added all the muscle relaxants, the combination put me into such a deep sleep that I was having a hard time waking up, so I started lowering the nighttime Neurontin and taking the same dose spread out during the day. Even thought it was the same dose and waking up got easier, the spasms and tightness started getting worse. I'm now working my way back up to the larger nighttime dose and things are getting back to where they were. Apparently the relaxant properties of the Neurontin in one large dose are providing the benefits, and the other meds are just maintaining it throughout the day. My pain doc (who originally put me on the Neurontin for nerve pain) said it was okay to take as prescribed or all at once at night if it made me too tired during the day. At this point I think the neurologist takes over this med, so I may ask her if she minds if I try going even higher on the nighttime dose and maybe I could lower the other meds and spare them for when I get older. I need to try and rearrange my schedule, though. I'm a bit of a night owl and I can't get up for work now. I'm going to try going to bed early and getting up early in order to give myself some more transition time from sleep with all the meds. Its interesting you mention the double vision, mine never went away--even with 60mg of Prednisone. I wonder if this was because it was SPS related rather than MG. Its actually gotten worse now due to the muscle relaxants; I'm attributing that to the MG. Everyone in my family has been concerned about my personality change since starting the Valium, but I've been thinking its a good thing since people at work are actually talking to me now (actually I'm talking to them). Apparently, their concern is that I'm continually one conversation behind, or in left field having my own conversation. It would have been nice if they had actually explained this concern a little better. I'm going to have to either work on focusing more, or, if I can take more Neurontin, maybe I can get down to 5mg of Valium and keep the good parts of my new personality and lose the bad parts. At least I know what I need to focus on now. Thanks for your help. Jeff |
Jeff,
I'm not sure but I probably did not mention that I also take Gabapentin (generic Neurontin) because of a back injury 24 years ago. I'll try to be short but being a southerner (and a female) I've realized that's not an easy thing - sorry. I fell down a flight of stairs at our house (graceful) and first orthopedic doctor said I had a cracked tailbone. But over the years my lower back pain really became more than Advil could help. My internist recommend that I go see a neurologist to see if there was possible nerve damage which there wasn't but he prescribed Gabapentin, that was around 2005. It did help relieve the pain more than Advil and I took it at bedtime. I decided to go to a different orthopedic doctor again in 2007 who determined with an MRI that I had two degenerative discs (L4/L5 and L5/S1). First I went through numerous pain management procedures - a waste of time and insurance costs. Then he said the only way to fix the problem was to fuse the vertabre - that's two fusions. Well needless to say I went for a second opinion, and that doctor said he'd recommend physical therapy first. I take one 300 mg capsule at bedtime even though I'm starting to hurt alot during the day but I have to get my sleep. It doesn't really last all night so maybe I need to see if I can take more but I'm not sure if I should along with the other drugs I take that make me drowsy. Since I can no longer work, the brain drain issue isn't a problem. I also think the increase in pain is due to the osteoporosis. Since it's been at least 5 years since I've seen an orthopedic doctor, I'm going to see another doctor just to see where things stand now. The double vision can be a symptom of SPS. My husband found the connection in his research along with the swallowing problem. This has led me to think that most and if all of my problems are SPS related. I don't have much weakness, just the stiffness issues. I think my new neuro agrees. Thank heavens the prednisone has solved my double vision issue. That was horrible to try to live with and I only had it for two months before starting the prednisone (60mg at first). Well as I said this wouldn't be short. Becky |
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Unfortunately, I'll have to rearrange my schedule as I wake up from it in a complete daze and need a good half hour to come back to reality. I like watching baseball and playing games at night, but I guess if I want to be able to walk (which I think is an important skill), I'll have to sleep at night, TIVO the baseball games and fit gaming in on weekends. The hardest part is going to be that someone will probably spoil the game for me while I'm at work :hissyfit: Any chance you or your husband know if this can run in families? Everything I've read say's it can't, but I just met my cousin for the first time in years and she looks like I did five years ago. I'm really hoping it turns out to be something different, but at least they know what I have as a starting point :( Thanks, Jeff |
Thanks for understanding my excessive replies.
I'm a bit confused about your response to neurontin. If I understand correctly, you said that taking it did not help your pain but coming off it set your symptoms off again. Since it hasn't helped you why didn't your doctor try something else during those years to give you some relief? What dosage do you take at bedtime? Maybe if you can take a lower dosage earlier in the day and the current dosage at night it might help more on its own. Just a thought. My husband said he seems to remember seeing a small quote about either MG or SPS running in families. However he has looked at so many sites and read so many publications about the two illnesses he can't be sure. I too love baseball and football (mostly football) and the problem you'll have is not only will your co-workers have to learn not to talk about it but you can't read the sports page either. Good luck. Becky |
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It actually did help a little with the pain, but not a great deal. The reason I stayed on it was that I have myoclonic jerks (I'm not sure if they're related to the other issues or separate), and it seemed to help with that. By itself, though, it never seemed to do anything for the stiff person syndrome. Once I added the muscle relaxants, it seems that the combination of Neurontin and muscle relaxants are helping, but either by themselves don't (I hope that makes sense). Let me know if I have to rephrase it again, as I'm not sure that was any more clear. Jeff |
Thanks for sharing your experiences.
I have learned a lot from it. It also made me wonder if possibly your SPS is less severe (than it would otherwise be) because of the MG? As both diseases have a somewhat opposing mechanism. |
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I thought the SPS went back to about sixth grade, but my parent tell me that I had a gymnastics teacher who wouldn't take me on as a three year old until I was cleared by a specialist because he thought I was tight. Interestingly, I do remember as a child that when my parents asked what I wanted for my birthday, I'd tell them a more comfortable mattress. To their credit, they tried a couple times, but never found one that was to my liking and then just thought I was overly sensitive. |
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Its not always clear if those were indeed symptoms of the same illness, or if looking back it appears like that. Possibly there is some genetic propensity which leads to a mild abnormality but it only becomes clinically evident many years later. |
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I really hope I'm wrong, but if she does, I'm not sure how to get my uncle to understand that benzos are a necessary part of the treatment. He tried to talk me out of taking them because his brother had such a hard time stopping them. I couldn't explain it in a way that he understood they're making up for a chemical deficiency in my body and I'll probably never have to get off them. I'm getting her an appointment with my doctor; hopefully she'll be better at explaining this stuff than I am. |
As a kid, I have been extremely bad in sports, could never run like other kids, but there was nothing to suggest any medical problem. I was nicknamed "the professor" by my friends, because I always preferred quite activities.
My father and one of my brothers are "less fit" and it takes them a longer time to recover from viral infections. But both run, play football etc. with no significant problems. 20 years ago, following Hep. B vaccination I had "MG like symptoms" but those resolved on their own within a year. 15 years later (after leading a very active normal life) I ended up in the ICU with what appeared like a myasthenic crisis. As I had completely normal tests, this diagnosis was disputed by the neurologists. My illness was eventually found to be a rare form of MuSK MG, possibly combined with congenital myasthenia, mostly involving my respiratory muscles. Some of my studies also suggest mitochondrial dysfunction (which can be part of the MuSK MG or not). The complexity of my illness led quite a few physicians doubt its existence. Like you, I had to figure out quite a lot on my own. |
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I have both SPS and Myathenia Gravis and have had a lot of success with treatment through a doctor trained at the Mayo Clinic. USC and UCLA did not diagnose me nor know the latest treatment for success.
My Mayo trained doctor is Sharon Yegiaian in Pasadena CA and she has many SPS clients and is up to date with the latest treatment options. She diagnosed me with Myasthenia Gravis as well after a blood test at the Mayo Clinic which USC never did. USC told me to prepare for the worst with SPS diagnosis and we could try paraclisys, which is used as a last resort treatment. Dr Yegiaian was able to stabilize me with weekly ivig, Cellcept, and Baclofen. After several months of being stabilized she thought I could reduce the Baclofen from 45mg to 40mg, but I had a relapse on the third week so she concluded that I probably have permanent nerve damage because of the delayed diagnosis and intervention. I have returned back to normal dosage and hoping to get results soon and coping with the aftereffects of high BP, heart rate, and severe pain. I highly recommend finding a doctor from the Mayo Clinic in your area or meet with my doctor in Pasadena. |
MG and SPS
i was diagnosed with MG 26 years ago. Ive been suffering from stiffness, and spasms in my therasic spine area, neck, shouldr and upper arms ever since my Thymectomy in June 2011. Now my knees dont want to bend without severe pain too. My GP is useless, i think he sees me as just trying to get out of work. This is the first ive heard of SPS and have just read enough to feel i have it. Im going to ask my GP for the blood test tomorrow. Im keen to talk more if you're interested .....
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