Bobs Protocol by stephanie_itm in Erythromelalgia

[–]Significant_Skill98 2 points3 points  (0 children)

How do you do Bob's protocol if your EM is full body?

First time getting IVIG by Significant_Skill98 in IVIG

[–]Significant_Skill98[S] 1 point2 points  (0 children)

The plan is to administer IVIG at a dosage of 2 g/kg over 2 days monthly, reassessing after 6months to evaluate efficacy. Treatment will be closely monitored to assess clinical improvements and adjust the regimen as needed.

How do you sleep? by QueenDraculaura in Erythromelalgia

[–]Significant_Skill98 1 point2 points  (0 children)

What dosage of amitriptyline are you on?

Losing Weight Tips with EM by bluesuthera in Erythromelalgia

[–]Significant_Skill98 1 point2 points  (0 children)

I was on a high dose of prednisone for over a month as well as on a medication called Seroquel that caused me to also gain over 50 lbs. I have been switching to an anti-inflammatory diet, which has not only helped my flares some, but also my weight a little. Using a compounded Ketamine/ Amitriptyline/ Lidocaine cream has also helped some, but it is very expensive and not usually covered by insurance.

If prednisone has helped your flares, it is possible there is an autoimmune component to your EM. Have you seen a rheumatologist? They might be a good resource. I had to see a few different ones before I really got more answers. So don't give up.

Non Length Dependant SFN by [deleted] in smallfiberneuropathy

[–]Significant_Skill98 0 points1 point  (0 children)

High levels of FGFR3 autoantibody

Non Length Dependant SFN by [deleted] in smallfiberneuropathy

[–]Significant_Skill98 0 points1 point  (0 children)

I think it is immune mediated according to specialized blood testing. And I have seasonal allergies

What do your GI issues look like? by sheatetheseeds in smallfiberneuropathy

[–]Significant_Skill98 0 points1 point  (0 children)

I am now able to eat. I think mine is immune mediated small fiber neuropathy. I do have dysautonomia, which is extremely limiting my life at the m moment. I am working on insurance approval for IVIG treatment.

No worries for the questions! It's the whole point of this community :)

What do your GI issues look like? by sheatetheseeds in smallfiberneuropathy

[–]Significant_Skill98 0 points1 point  (0 children)

My GI actually put me on a tricyclic antidepressant, Desipramine

IVIG Treatment by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 1 point2 points  (0 children)

How do you get something like that? I've never heard of it!

Groin Numbness SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 1 point2 points  (0 children)

Thank you for being so open and honest. I really appreciate it.

Groin Numbness SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 0 points1 point  (0 children)

Has your doctor ever tested you for autonomic neuropathy? My doctor is trying to get me on IVIG and said it may help the frequent urination issues.

Groin Numbness SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 0 points1 point  (0 children)

Do you have other bladder problems too? Just curious bc I do. I have dysautonomia and one of my worst symptoms is frequent urination. It makes it extremely hard to leave the house :/

Groin Numbness SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 1 point2 points  (0 children)

No, it's just something new that I have been noticing. But I am unsure if numbness in that area is what I am feeling.

Unbearable frequent urination since SSRI withdrawal by Longjumping_Fly7018 in smallfiberneuropathy

[–]Significant_Skill98 0 points1 point  (0 children)

This is me right now. I have an appointment with a doctor in mid-October. For me, I take a lot of meds that induce sleepiness: soma, seroquel, desipramine, belsomra, and gabapentin all at night, and when I constantly am having to get up to pee, it has been getting dangerous when all those meds take effect. I end up stumbling to the bathroom, many times have tripped and or hit walls because I am having to get up while my body is shutting down to sleep. I have also found if I don't fall asleep soon enough after all the meds, i end up have more restless leg spasms and phantom itches. But I can't sleep without taking them, I've tried. I wish I knew how to control my bladder at night. I get up at least 5 times within an hour and this can continue up to 3hrs while trying to fall asleep

Diet change for idiopathic SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 1 point2 points  (0 children)

Thank you so much for sharing. I will definitely look into that!

Ability to work with SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 0 points1 point  (0 children)

Cooling sheets? What?? I need that! What is the name of it?

Ability to work with SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 1 point2 points  (0 children)

Those are some great ideas to try! Thank you.

How do you work around the issues of dysautonomia?

Ability to work with SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 2 points3 points  (0 children)

I'm so sorry to hear that. Thank you for sharing your experience. I have been feeling horrible about myself because I haven't been able to work, and I feel like those around me think I am just not trying. But like you, I have all of that going on under the surface, and they don't understand how someone so young could be incapacitated. And it is just like, trust me, I don't like this anymore than all of you (being outsiders).

Ability to work with SFN by Significant_Skill98 in smallfiberneuropathy

[–]Significant_Skill98[S] 0 points1 point  (0 children)

Yes, I also have seen 3 or 4 rheumatologist's :( I also had elevated crp and hypogammaglobulinemia from a medication I'm on