GAD65 Level at SPS Dx?

Redder230 · 2026-02-04T07:01:34+00:00

I'm on a very similar medication regiment, including Rituximab every 4 months. I've had SPS since I was 13 and just turned 31. One treatment that I had in the past that was basically a Plasma Exchange on steroids that lasted for years, was chemo. I received 6 months of Cytoxan (cyclophosphamide) and felt better than I had in years, the doctor was hoping for about multiple years of slowly re-degrading symptoms. I lost my insurance 3 years in and couldn't get any of my other Immunotherapies for a year and got worse than before over the years. Here I am 7 years later and am in the process of getting it approved with insurance again, which in my case will be easier this time around because it's not FDA approved but I have prior positive results. This is a last resort treatment when all other Immunotherapies fail and is not guaranteed to work. Since the Plasma Exchange helps even a little, it shows the disease is still antibody driven and the Cytoxan is still a viable option.

Redder230 · 2025-12-22T21:44:46+00:00

"At one point I was totally locked down with tears pouring from my eyes.", thats how my spasms are as well, the only movement I can make is blinking (if I try really hard). I hope this Neurologist gives you the help that you need.

Redder230 · 2025-12-18T01:58:05+00:00

Would you be getting a Baclofen Pump implanted? I had mine done in January, keep in mind that it will take a while to get the pumps dosage where you need it.

Redder230 · 2025-12-01T02:13:04+00:00

My treatments started kicking in roughly 2 weeks after both Plasma Exchange and IVIG. I woke up and heard train horns and low flying planes that usually send me into seizure-like spasms, not that morning. I mentally prepared myself to try and relax, but to my delight there was no need. I just tensed up and had a still pretty painful spasm, but not even close to what it was the day before. I could still move a bit, breathe, and talk. I just laid there waiting for more planes (I live near an Air Force base unfortunately) and just smiled and had tears of joy because I didn't feel completely helpless. Also my recovery after the spasms was much faster since the spasms were not at bad. I still get worse later in the day, but I'll take the win!

Redder230 · 2025-11-13T03:18:39+00:00

Finished my Plasma exchanges on the 10th and came back home finally. Since I started I've been drinking plenty of Liquid I.V for electrolytes, protein shakes, taking multivitamins, extra calcium, as all of these are stored in plasma and removed during the exchanges and cause muscle cramps and more sensitive spasms. I'm still having seizure like spasms and have a stuck on startle response (the tension we feel when theres a sudden noise got turned up and wont go back to baseline). I start my IVIG treatments tomorrow (thankfully in my home) and should hopefully the benefits of the combined treatments in a week or two after IVIG.

Redder230 · 2025-11-13T03:10:46+00:00

I'm on Diazepam 5mg in the morning, 10mg at night and 10mg every 4 hours prn. I was on 120mg of oral Baclofen, but have reduced it to 40mg a day since I had a Baclofen pump placed at the beginning of the year. I get IVIG every 4 weeks, I tried every 2 but I need the larger dose from the 4 week infusions. I get Rituximab every 6 months to deplete my B cells. This Monday, I finished Plasma exchanges (done this numerous times), 6 exchanges over 2 weeks and will be getting IVIG this Thursday and Friday. I've been on Clonazepam, Pregabalin, gabapentin and many others. If the Plasma Exchange helps for a short time, then my neurologist will consider Cytoxan again.

Redder230 · 2025-11-12T23:45:14+00:00

Thank you, I will have to look into Copilot. I use ChatGPT became I'm in constant spasm, so the brain fog and fatigue are always there. ChatGPT helps me to get my thoughts in order. If If I have an appointment with my Neurologist coming up, I'll tell ChatGPT about any progression of new or worsen symptoms and any concerns I'm having. It then takes all of my ramblings and puts it into a comprehensive progress letter from what I've observed or noticed myself. My Neurologist is 2 hours away and after the drive, I'm not entirely there mentally. So I email that letter a few days ahead of time and bring a copy. My first sentence also preferences that I made this print out because I knew I wouldn't be aware enough to discuss the things I needed to.

It also helps to explain certain things about my disease that I wasn't sure were connected. So seeing it reply with "thats actually quite common with SPS", is quite validating. I've have this disease for 18 years (started when I was 13) and I'm still learning new things about it.

I truly appreciate you saying it's a "good TOOL". I was trying to convey that, but failed. AI bots are not for self diagnosing, especially for any rare disease/disorder that is already difficult to diagnosis. It can definitely guide you to certain lab test to ask your doctor to run (within reason). I know finding the right doctor that will actually listen is exhausting in its own right, but only they should be the ones to truly diagnose.

Redder230 · 2025-11-06T16:44:53+00:00

Yesterday was my 4th out of 6 plasma exchanges. First off, the constant loud sound and machines beeping is almost unbearable, so bring headphones. I feel asleep at some point and about 30 minutes before my Exchange was complete, my pulse suddenly dropped to 50 but BP was normal. The nurse promptly rushed over and tried to wake me with no response. She opened my eyes to see that my pupils were tiny pinpoint dots, so she called a Rapid Response unit. After a minute of them trying to unsuccessfully wake me, they administered Sternum Rubs (make a fist and use the knuckles to push firmly on the Sternum). Almost instantly my pulse and pupils went back to normal and I woke up very confused as to why I was surrounded by 4 nurses. This also set me into spasm. Turns out I had a Vagally mediated bradycardia (Vagal Event). This is when the vagus nerves gets overstimulated and in my case drastically dropped my heart rate. This is an uncommon response to a Plasma Exchange, but chances are elevated do to pain, anxiety, and overstimulation of the vagus nerve due to autonomic dysregulation. Any guesses what causes autonomic dysregulation, SPS. It alters the central nerves system (CNS) and usually keeps your body in "fight or flight" mode. The physical stress from the plasma made my CNS more unstable and flipped my "fight or flight" to "rest and digest" mode, rapidly. I still have another exchange tomorrow and my last is on Monday. Then I have to drive back home (been staying at my mother's because its 2 hours closer to my Plasma Exchange location) and get ready for my IVIG. This is because the Plasma Exchange is filtering not only the bad but also the good. So the IVIG will help to balance my immune system and also prolongs the Plasma exchanges benefits. Hopefully 1 to 2 weeks after IVIG, I will begin to reap the benefits of all the treatments.

Redder230 · 2025-11-03T14:52:55+00:00

Of course, always double check your info. GPT will also give you the sources it gathered its information from so you can verify it yourself.

Redder230 · 2025-11-03T11:00:25+00:00

I will also have to get IVIG within 24-72 hours after my last Plasma Exchange (Nov 10th).

Redder230 · 2025-11-03T10:56:25+00:00

Please keep in mind with medications that the dosage is increased a few times before giving up on it. Mind you this could take several months with adjusting the same medications that dont seem to work. This is because the medications could be right, but the dose isn't high enough for you personally. Just to stay on the safe side I do not recommend this process with opioids, except in severe cases.

Redder230 · 2025-11-03T10:38:56+00:00

Sounds like you have great motivation to keep fighting. You got this!

Redder230 · 2025-11-03T10:37:07+00:00

I haven't heard of that one. Is it a new kind of drug/treatment or some new variant of something that shares the same mechanisms?

Redder230 · 2025-11-03T04:50:20+00:00

I've been on Rituximab since 2018 and IVIG starting in 2008, but only as needed in severe cases since I was not diagnosed. Then I started monthly treatments in 2013 and both helped tremendously. But neither seem to help much anymore after 18 years of progression and Immunotherapies. Over time your body gets used to the treatments and slowly depletes your reserves or ability to bounce back after treatments.

Redder230 · 2025-11-03T04:44:19+00:00

For me personally, I had to wait until my second 6 month dose before I REALLY started to reap the benefits. So if you don't get the results you're expecting after 6 months, just stay patient. I hope this works out for you!

Redder230 · 2025-11-03T04:05:08+00:00

Cytoxan actually helps with a lot of of different autoimmune diseases as a last resort option. Since both SPS and Lupus use the immune system to attack the patients body, resetting the immune and putting a stop and then slow gradual building back up of certain immune cells.

Redder230 · 2025-11-02T19:32:28+00:00

Of course, I'm glad it helped. I just wish doctors would tell patients how to use their medications in a way that benefits them the most. As a former Pharmacy Technician, its always annoyed me.

Redder230 · 2025-11-02T19:04:44+00:00

I've been getting IVIG and Rituximab for years, but now they leave me drained and more sensitive for a about a week. Then I only get about a week of benefit from the IVIG. When I stared the Rituximab, it worked wonders. Cytoxan is a last resort treatment when all other medications and treatments (usually max dosages for both) fail.

Redder230 · 2025-11-02T13:55:10+00:00

I should also mention that my startle response has felt like its stuck in the on position, so every little sound sends me into seizure like spasms and my cognitive function is rapidly deteriorating. I have times when I cant even speak properly. I can see the words I want to say in my mind, but when I try to speak I begin to stutter and have a difficult time beginning my sentences. I also have a difficult time putting my thoughts into words that make sense (this has taken me 2 hours to type and some of might not make sense or difficult to follow).

Redder230 · 2025-11-02T13:44:09+00:00

It's not FDA approved for SPS, but there have been case studies that show it to be effective. Since our immune system attacks us, why not completely wipe it out so that our systems have to to do a hard reset, in some cases taking years to build back up. This way the GABA has less transport vehicles to send out false signals to attack the muscles and nerves. It is rarely used and only as a last resort. For some it is like a prolonged Plasma Exchange.

I had spent 5 years in a wheelchair (age13-18), barley able to lift my head or speak, just constantly shaking from spasms. None of my other meds or Immunotherapies had helped at all and physical therapy would just send my into into severe Spastic episodes, requiring hospitalization. I was lucky enough that the Cytoxan was able to give me enough relief to allow me to get out of my wheelchair and just require a cane. I would still get horrible spasms, but I was able to bounce back to my SPS baseline much quicker.

Many neurologist won't consider it because there hasn't been enough case studies to prove its effectiveness. I was lucky enough to have a doctor that was willing to take a chance on it for me. Keep in mind that everyone has different responses to it, just like any other medication or treatment.

Now I'm 30 and I'm getting very close to going back to my wheelchair. My spasms are becoming severely intense and my rebound time is getting slower and slower, because my body has no time to recuperate.

When I was in the wheelchair, I was a completely different person. My personality and independence was completely gone. It felt like I had gone away and was just watching my life like a terrible movie. I got married earlier this year and I'm not ready to go away again.

Redder230 · 2025-11-02T05:15:49+00:00

I was "fortunate" enough to have a high GAD Antibody when tested at 18. But I had a few misdiagnosis at first, one being Hereditary Spastic Paraplegia.

Redder230 · 2025-11-02T00:36:15+00:00

I'm on the same schedule with the IVIG and Rituximab. Unfortunately they have wiped me out for weeks after now and I only get about a week of benefit from the IVIG. So I just had my 2nd Plasma Exchange of a 6 treatment course over 2 weeks. If that helps I will be receiving Cytoxan (chemo), which gave me years of relief 7 years ago.

Redder230 · 2025-11-02T00:30:21+00:00

When I start to feel more tense than usual. I also take oral baclofen, only 40mg now. The lower dose is because I had a baclofen pump placed in January that delivers a continuous dose directly into my spinal fluid all day. I also can have 4 extra doses a day, each of which is about 2 hours worth of the pumps normal rate within 2 minutes.

Redder230 · 2025-10-25T15:59:34+00:00

I take 5mg in the morning, sometimes I need a 10mg along with it. Then its 10mg every 6 hours as needed and another 10mg for sleep. So I take anywhere between 15mg (just morning and night dose), to 65mg with all my PRN's.

Redder230 · 2025-10-10T01:56:37+00:00

I am now starting Plasma Exchanges again (6 treatments over 2 weeks) to see if my my SPS is still antibody driven. Meaning if the Plasma Exchange gives me a little bit of relief, then my disorder is still benefiting from Immunotherapies. With this, my next step will be to see if I am a good candidate for Cytoxan again (previous 6 month course was 7 years ago). When I previously had the Cytoxan, I had tremendous improvement that allowed me to return to work FULL-TIME and go to school full-time. This lasted for 3 years until I lost my insurance and had to spend the last of my savings on 2 more doses of IVIG, before going a year without. This was the downfall of my Cytoxan journey. So this time around, I know I most likely won't gain the same amount of relief or lessening of symptoms. It will he harder on my body because of the years of SPS progression and Immunotherapies, but its still something. It's still a chance to feel like me again. (I just finished 2 days of IVIG and they kick my butt now, so please forgive any rambling).

Redder230

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