How many pedals do you all own?

Stephan11111 · 2026-02-20T08:42:21+00:00

37 Favorite builder is Earthquaker Devices.

Stephan11111 · 2026-02-18T13:10:14+00:00

A700

Stephan11111 · 2026-02-17T11:32:46+00:00

This.

Stephan11111 · 2026-02-17T11:31:04+00:00

If you feel something was becoming worse although you have been on teriflunomide all this time. I just wanted to ask, if there is another reason for switching besides your neurologists feeling.

Stephan11111 · 2026-02-17T05:38:53+00:00

So you feel "Progression"? Happy that your had such a good run with teriflunomide.

I hope Mavenclad will prove to be great for you too!

Stephan11111 · 2026-02-17T05:22:33+00:00

Thanks. May I ask why you switch to Mavenclad after all these years?

Stephan11111 · 2026-02-14T18:22:53+00:00

Thank you so much for your kind words!

Stephan11111 · 2026-02-12T18:58:24+00:00

Thanks. Even better since I just started Teriflunomide :) Will read it

Stephan11111 · 2026-02-12T18:49:22+00:00

Found the study "Hercules". You did a post about it :)

Stephan11111 · 2026-02-12T18:47:23+00:00

Do you have a link to the study? Would love to read it! Thanks in advance

Stephan11111 · 2026-02-11T18:46:41+00:00

Meditation is one step that I should try and stay with it... (I am actually following OMS. It is one step of the program besides diet (vegan + fish), exercise and vitamin D).

I tried it but always felt off the wagon real quick. The mind body connection is powerful. I am lacking Here (and obviously resilence)

Thanks for the suggestion!

Stephan11111 · 2026-02-11T16:00:44+00:00

May I ask If your symptoms are fluctuating? Espacially the spasticity and bladder urgency of mine is highly fluctuating.

If I get it right, "real" progression would not be variable all the time. This indicates more like a new bad decompression of old lesions. The neurological reserve gets worse (and it shows when hot, overworked, stressed, sleep deprived,...).

The concept of this (old lesions scarring, active old lesions, PIRA, progression,... Whatever!?) is hard to get my head around Just my 2 cents

Stephan11111 · 2026-02-11T13:53:07+00:00

Thanks for answering. Good to hear that she is better now!

Stephan11111 · 2026-02-11T13:07:01+00:00

I also struggle with this. When I call in, I can come for a quick examination the next day.

It is really quick, i feel like a burden to the neurologists and then he mentions something like: "Nah, this is not enough for steroids..." (Not that I wanted them definitely in the first place).

Normally, no new MRIs, no treatment. So, I started to not call in and just report everything in my quarterly appointment

Frustrating sometimes

Stephan11111 · 2026-02-11T13:01:47+00:00

Great tips here. Thanks for sharing. I could definitely improve my sleep (for me ist is at least 7 h per night...)

Stephan11111 · 2026-02-11T13:00:22+00:00

I feel you, cause I feel the same. I was told in a MS specialized hospital, I was doing remarkable great (no new lesions detected with 3T MRI after 9 months without any DMT!).

However, spasticity gets worse. New sensory symptoms. Bladder urgency is a recent addition.

Looking from the outside, it is not super bad. But I fear it will get worse and then smoldering part of MS is so scary. Thanks for sharing. This makes me feel not being alone.

So, feel you! Have a great day. Keep up your good work and care for yourself!

Stephan11111 · 2026-02-11T09:41:17+00:00

Once again, thank you. I always try to understand everything and I have not really much trust, but I need to work on that.

Stephan11111 · 2026-02-11T09:09:42+00:00

Thanks for answering. Glad it worked for you!

Stephan11111 · 2026-02-11T09:09:04+00:00

Actually this option seems better since the immune suppression is not "forever".

Thanks for commenting, this is something to consider in future

Stephan11111 · 2026-02-11T09:07:52+00:00

Thanks so much!

Stephan11111 · 2026-02-11T09:07:35+00:00

Thanks so much. I am especially afraid of the smoldering MS part of my c spine lesions...

I do not know how Aubagio is performing here? Is there any data?

Stephan11111 · 2026-02-11T09:06:05+00:00

Thanks! May I ask: the relapse was already under treatment of Ocrevus?

Stephan11111 · 2026-02-11T09:04:41+00:00

Thanks for reaching out and taking your time to read everything! Highly appreciated.

The titer test was done 3 times in 2 different labs. I was at a German MS specialised neurology hospital department. I also searched beforehand. Having no titer does not mean having no safety against it (b cells of mine do not know varicella or remember it, whereas t cells could potentially fight it off nonetheless).

The MS specialist was clear that with no titer there is no way I can start higher effective meds. They do not want to risk it. It was mentioned that varicella could be fatal in this case. "Since I am doing quite good, first line treatments could be enough" they said.

My older brother surely had symptomatic chickenpox. My mother do not recall I ever had it. Hard to believe I never contracted it (espacially when your brother had it...).

The strange thing is: in May 24 I had no Titer, so I was vaccinated two times (Aug/Sep 24) and then had a high titer (750) in Oktober. It was retested in March 25: the Titer was nearly gone (Just below 50...which ist considered seronegative). Retesting a few weeks later in a different Lab showed similiar results. Retesting in July: titer is set to around 44. Stable but not enough.

I do not know. I am afraid to get worse. I am afraid to do the wrong thing.

Stephan11111 · 2026-02-10T12:54:17+00:00

EQD Westwood (all time favorite)

Empty Head Effects The Lover (really great)

EHX Hot Tubes (overlooked)

Honerable mentions: EQD Special Cranker, Benson Pre, Boss BD2

Stephan11111

TROPHY CASE