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

I've actually seen a huge improvement with the meds. She started me on 10mg of Baclofen and 5mg of Valium, both four times a day. But the scripts said I could go up to 20mg on the Baclofen and 10 on the Valium. Unfortunately, she was in town for about three days and immediately left for another conference, so I wasn't able to ask how quickly I could titrate. I guess its good that she was able to fit me in while she was back since her secretary called me and asked if I could come in with about a day's notice and it would normally take weeks.

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

You've been really helpful. I appreciate it. I have tried to keep my doctor informed as to the medicine dosages by email. She responded once to say that she's out of the office, but asked that her secretary set something up, so I assume she's seeing the messages and would write back if she really had a problem with what I've done. When she's in town, she's really good about responding to emails, but it seems she's been in conferences all month and then will be on vacation sometime next month.

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.

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

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

Sorry I'm replying so late. I've been at a family reunion all day, so hopefully you get this before your appointment tomorrow.

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.

Becky,

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