Possible Stiff Person Syndrome

[ChookityPop]

nothing to this day could be find. ana, ena panels ,crp, sedimentation, all negative. idiopathic thay say if you believe.

Have you tested TS-HDS and FGFR3?

 

[ChookityPop]

That’s what I always thought about myself too. I’ve just learned I have LEMS, but I’m negative for the autoantibody that causes it. I wished I could understand why autoimmune testing is so bad to this day. Dr Brent Goodman at Mayo says he’s always retesting his patients on follow up visits because of how poor the testing is.

Can I ask how you was diagnosed with LEMS?

 

[Gingergrrl]

Can I ask how you was diagnosed with LEMS?

I know you were asking @Belbyr but in case it is helpful, I was diagnosed with LEMS in 2016 due to testing positive on multiple tests for N-type Calcium Channel autoantibodies, plus abnormal EMG & Nerve conduction testing, plus my symptoms of muscle weakness that were affecting my body & lungs (at that time). It was at that point that my official diagnosis switched from ME/CFS to LEMS.

 

[Zebra]

how yours was diagnosed?

Hey, @Belbyr

There are a couple of folks on this thread, me included, who would love to know more about how you were finally diagnosed.

When you feel up to it, I hope you will let us know.

I hope this diagnosis has allowed for an effective treatment plan and good prognosis. You searched long and hard for answers.

 

[wolves2626]

Have you tested TS-HDS and FGFR3?

no. I don't think my doctors even know what are they 😀

 

[ChookityPop]

I know you were asking @Belbyr but in case it is helpful, I was diagnosed with LEMS in 2016 due to testing positive on multiple tests for N-type Calcium Channel autoantibodies, plus abnormal EMG & Nerve conduction testing, plus my symptoms of muscle weakness that were affecting my body & lungs (at that time). It was at that point that my official diagnosis switched from ME/CFS to LEMS.

Thanks for sharing!

N-type calcium is the same as VGCC-N? I have tested VGKC, VGCC, CASPR2 and LGI1. But VGCC-N is something else?

 

[ChookityPop]

no. I don't think my doctors even know what are they 😀

Those antibodies are recognized in some countries/places and some patients get treated with IVIG. Im not one of the lucky ones sadly

 

[ChookityPop]

That’s what I always thought about myself too. I’ve just learned I have LEMS, but I’m negative for the autoantibody that causes it. I wished I could understand why autoimmune testing is so bad to this day. Dr Brent Goodman at Mayo says he’s always retesting his patients on follow up visits because of how poor the testing is.

Can I ask how they diagnosed you with LEMS?

 

[Belbyr]

Hey, @Belbyr

There are a couple of folks on this thread, me included, who would love to know more about how you were finally diagnosed.

When you feel up to it, I hope you will let us know.

I hope this diagnosis has allowed for an effective treatment plan and good prognosis. You searched long and hard for answers.

I am in the process of trying to get a second opinion.

The Dr I saw is a 78 year old neurologist in my home town. When he examined me he said I had dry mouth (but I don't, I over salivate due to my GI issues) he also said I didn't have any reflexes, but I went home and grabbed a tool to check myself and I do in fact have reflexes.

His EMG test was normal and the nerve conduction test was just a hair outside the normal range by about .10 My biggest concern with the diagnosis is I don't 'think' I have weakness. After being sick for 17 years if it was LEMS, I figured I would not be able to climb stairs or pick my 80lb dog up and into the truck.

I don't know if I have mentioned here or not. I found out I have what is called RCPD or basically the complete inability to burp. It is treated with botox to the dysfunctional muscle. I still have another month to wait to get the procedure done. If that by miracle solves my GI issues, I will jump for joy because GI issues are about 80% of my over all symptom burden.

We just don't know if I will still have POTS (hyperadrenergic type) or not... and/or LEMS

 

[Gingergrrl]

N-type calcium is the same as VGCC-N? I have tested VGKC, VGCC, CASPR2 and LGI1. But VGCC-N is something else?

@ChookityPop I'm so sorry for the delayed reply and haven't been on PR in a few days. I just replied to your PM and please let me know if I missed anything that you asked.

My understanding is that the Voltage Gated Calcium Channel (VGCC) autoantibodies that can be tested by a commercial lab are the P/Q type and the N type. Some labs lump several things together while others break down each individual autoantibody test.

If you want to be certain, I would try to get a break-down of each autoantibody that you were tested for, and for the VGCC Autoantibodies, it should specify the P/Q type and the N type. In my case (since 2016) I am consistently positive for the N type but negative for the P/Q type.

After being sick for 17 years if it was LEMS, I figured I would not be able to climb stairs or pick my 80lb dog up and into the truck.

From my personal experience, and from talking to many people with LEMS in a private FB group, I agree with you that climbing stairs would be very difficult and you would not be able lift 80 lbs if you had LEMS. Although I realize that there are exceptions to everything out there!

I consider myself truly to be in remission from LEMS yet climbing stairs and lifting heavy things are still both very difficult for me. But at my most severe (prior to treatment), I could not squeeze shampoo out of the bottle, open a door, or cut food with a knife.

 

[hapl808]

Yeah, something like LEMS is of interest to me as well, since I lost the ability to stand unassisted several years ago. I don't think the symptoms fit, as my muscular decline happened after a few injuries or allergic reactions over a 5-10 years period, and that doesn't sound exactly right.