I completely understand. Had I been healthier in college, I'd have been a chem major so I could have been a pharmacist or done pharmacological research, (or AI research, but neither program accepted me because while my GPA was high, I was in and out due to the medical issues).

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

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

Hi Becky,

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

Thanks, it does help actually. She has me on the same dose of Valium (30mg/day) split into four doses instead of three. The prescription was written for up to 40mg/day, but when I started taking 10mg x 4 she asked if I'd back off to 7.5mg. Ideally, she wants me at 5mg x 4, but the spasms are too much at that level. In addition, she has me on 20mg of Baclofen 4x/day and I'm still at 35mg of Prednisone, though she wants to start trying to cut this in two months once I've stabilized from the surgery.

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

Don't worry about it. I always set out to be short, but never am. The first thing my doctor said to me is that Neurontin is used for this, but we both agreed, I'd been on it and it never worked. It was a complete surprise that coming off it at night set my symptoms off again. It seems to work in combo with the other meds.

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

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