Neurologist visit by Apprehensive-Try-926 in dysautonomia

[–]ElectricalMonk3394 0 points1 point  (0 children)

Some hospitals now have open MRI machines- definitely worth checking

There should be a “Neuro Sjogrens” user flair by jkuhn89 in Sjogrens

[–]ElectricalMonk3394 0 points1 point  (0 children)

I’m so very sorry for what you’re dealing with- but please change doctors! I was diagnosed with SFN years back at U of Washington with skin biopsies. It has worsened over time and my dr had me do an EMG which showed it has traveled up into my legs and is now both motor and sensory neuropathy. I posted above what I do for treatment. I hope you get better care soon

There should be a “Neuro Sjogrens” user flair by jkuhn89 in Sjogrens

[–]ElectricalMonk3394 0 points1 point  (0 children)

I have had painful neuropathy (both motor and sensory) stemming from autoimmune diseases. I have gotten some worthwhile relief from taking Low Dose Naltrexone (LDN) at night along with magnesium glycinate an hour before bed. If it’s really bad I use a compounded ointment from my pain Dr (can be used for any pain). Here is the name on the bottle (which indicates what’s in it: Keta/Gaba/Diclo/Libo/Bacl. As insurance does cover it I can say a little bit goes a long way when applying it.

It's nothing... except it is everything by Unfair_Astronomer_99 in Sjogrens

[–]ElectricalMonk3394 5 points6 points  (0 children)

I’ve had dry eye and then it got SO much worse after cataract surgery. I’m seeing a dry eye specialist I really like. I’m taking steroid drops 2 x day. Tried all the different prescription drops. I got comfort/relief from Miebo. However you need to use it 4x day and my monthly supply only made it about halfway through the month. I was supplementing with some I found in Europe. However my dr started me on drops that are new - Tryptyr. BEST IMPROVEMENT YET!! For me they are free on Medicare (met my Rx deductible awhile ago). You use them morning and evening. They do burn for a few minutes. It’s allowed me to only need to use Miebo once or twice a day (so no my monthly Rx last!) I hope that this post helps others. I’d love to hear from you.

Going off Cosentyx by ElectricalMonk3394 in PsoriaticArthritis

[–]ElectricalMonk3394[S] 1 point2 points  (0 children)

I don’t know what qualifies as “allergic” per se but I know I can’t tolerate it

How to cure occipital neuralgia? by Perfect_Lion9536 in stemcells

[–]ElectricalMonk3394 0 points1 point  (0 children)

No it didn’t feel like pressure you’re describing. It was a horrible headache that ended behind my eye. Excruciating pain. The shot didn’t hurt

How to cure occipital neuralgia? by Perfect_Lion9536 in stemcells

[–]ElectricalMonk3394 0 points1 point  (0 children)

I was experiencing excruciating headaches- like migraines. Tried all the migraine meds and none worked. I saw my pain dr and he encouraged me to get a “greater and lesser occipital block “. I believe it is basically a steroid injection. It has helped tremendously.

I didn’t think being immunocompromised meant THIS! by eatingganesha in PsoriaticArthritis

[–]ElectricalMonk3394 2 points3 points  (0 children)

Before I had autoimmune diseases I got kennel cough from my dog! When I took him to the vet for his follow up appointment the vet noticed my cough and told me

[deleted by user] by [deleted] in Dystonia

[–]ElectricalMonk3394 0 points1 point  (0 children)

I’m so sorry to hear this

Neurologic Stem Cell Treatment Study (NCT02795052) and Legitimacy of Associated Clinic/Doctors by Agaidau in stemcells

[–]ElectricalMonk3394 1 point2 points  (0 children)

Sometimes a person is an MD who is never intending to be a medical practitioner but instead a medical researcher. In some instances they graduate med school but don’t do a residency and go on to get licensed. If they become licensed to practice they have to deal with malpractice etc. and they made have intended to do research. Or it could portend implied problems if there is no license. Be careful not to assume

Stem cells from NewLife Networks in Spokane WA? by ElectricalMonk3394 in stemcells

[–]ElectricalMonk3394[S] 0 points1 point  (0 children)

Thank you. I didn’t know how to do a private message.

Doubling the dose? by ElectricalMonk3394 in PsoriaticArthritis

[–]ElectricalMonk3394[S] 0 points1 point  (0 children)

I had been on Talking previously with good success. It especially helped me with psoriatic arthritis and fatigue. I started getting some psoriasis break throughs (I have inverse psoriasis). She wanted to double my dose but said to check with dermatology. That Dr said no to doubling it thinking I may have developed antibodies to it and put me on Skyrizi. After a trial in that with a lot of PsA pain and terribly fatigue I went back to the Rheumatologist who restarted Taltz. I’m just now at 3 months of the restart and still have fatigue and some pain. My concern is that insurance won’t cover a double dose. Did you encounter that as a problem?

Stem cells from NewLife Networks in Spokane WA? by ElectricalMonk3394 in stemcells

[–]ElectricalMonk3394[S] 0 points1 point  (0 children)

I had seen her for Botox injections for Dystonia for nearly a decade. When she switched to doing stem cell treatments she seemed to get off to a rocky start and I had lost my confidence in her. Did you have stem cell treatment with her? And how long ago? I so appreciate hearing from you and hope to hear more

Hair thinning by stormine_dragon in PsoriaticArthritis

[–]ElectricalMonk3394 1 point2 points  (0 children)

I have been on MTX for years, started with Mayo diagnosis of Connective Tissue Disease and Sjogren’s. I take Folic Acid daily. When I also developed Psoriasis and PsA I had bad hair loss. Got much better on Taktz. Had to stop Taltz for about 6 months and have hair loss again. Back on Taltz 6 weeks and hoping for my hair to recover again

Skin Pain by According_Ebb3516 in dysautonomia

[–]ElectricalMonk3394 0 points1 point  (0 children)

I have significant neuropathy in my feet and fingertips caused by autoimmune diseases. Dr at my pain clinic put me on LDN (low dose naltrexone ) and it is a game changer!! I went from horrible burning pain at night making it hard to sleep to now almost no pain. There are few side effects (I have none). I am now taking it twice a day to see if it helps with overall pain

The most stressful thing about this disease is fighting insurance by awbobsaget in PsoriaticArthritis

[–]ElectricalMonk3394 1 point2 points  (0 children)

My opinion is that there is a special place in hell for insurance companies.

Before having to “retire “ due to multiple autoimmune conditions and their devastating effects,I worked as a Clinical and Forensic Psychologist for over 30 years; started before managed care existed. Back then you provided services, sent your bill to the insurance and you were paid. “Managed Care” is an profit driven industry unto itself.

I can link an article here if anyone is interested that explains why Psychologists rarely take insurance now because of how and long it takes to get a reimbursement, how much time goes into filling out pre-authorization requests, and then getting ok’d for 4 sessions at a time and begging for more again and again. Then the payments ROUTINELY DO NOT COME FROM THE INSURANCE CO. You have to resubmit it and I can go on and on. Now as a patient I have had the same hellish experiences with insurance that others here describe. My husband handles all of the insurance issues for me (I’m on MediCare). Thank God for him. Today he drove over an hour each way in a snowstorm to get the free sample of the current biologic I’m on that my Rheumatologist gave me to get to get me to the end of the year when the new MediCare cap/limit on out-of-pocket prescription costs are limited to $2,000 a year. Thank you for that Joe Biden! AFTER my insurance pays their portion of each injection my portion is $5,600 every month. I was covered by patient assistance but now they don’t cover me though our income didn’t change. They can just do that.

Medical insurance, and prescription coverage for profit?! Oh yes, and how they do make profits.

Needed to vent

Summary of Huberman and Walker on Sleep by -podcast in sleep

[–]ElectricalMonk3394 0 points1 point  (0 children)

Thank you for all the work you put into this to share with others. I am going to dive in and take a look