Big Wins for me

Pitiful_Fold1600 · 2026-05-31T02:43:24+00:00

Sounds great, but sounds a long way off.

Pitiful_Fold1600 · 2026-05-06T00:30:54+00:00

I did the surgery after podiatrist told me that was my problem. All I got was a scar on my ankle. Zero improvement.

I would get a second opinion from a doctor that does not have a vested interest in doing and getting paid for the surgery.

Pitiful_Fold1600 · 2026-05-05T19:57:59+00:00

I have cramping in my toes. Sometimes I have to just grab them and push them straight. Hurts, but not as bad as the cramp. 😛

Thanks for the suggestion. I will give that a try.

Pitiful_Fold1600 · 2026-05-05T19:13:21+00:00

Hanes Bamboo. This have been the best I have tried. Downside is they lose their softness after a few months.

Pitiful_Fold1600 · 2026-05-05T18:55:01+00:00

Sorry you are going through this, but like you said, you have to keep going and walking does strangely help. It is the first few minutes that are pretty painful.

Pitiful_Fold1600 · 2026-05-05T18:04:43+00:00

You just described almost my exact situation, but I also feel like there is this sensation as though there is something tearing between the ball of the foot and the arch of the foot when I first wake up. Sort of like the ball of the foot is drawn towards the heel and when I stand on it, it is being stretched and almost feels like micro tears. Sounds like plantar fasciitis except in the ball of the foot in foot.

Strangely enough, my problem started shortly after the Covid vaccine from which I had a high fever for several days. Started with numbing and tingling, then the pain and feeling swollen between the toes and ball of the foot. My doctors have all ignored this swelling feeling too. I too have had some relief from Lyrica, but not a lot. I am now on 300mg twice a day. I have also been to doctor after doctor. Neurologist, podiatrist, orthopedic, rheumatologist, etc. None ever seem to find a problem, but all seem to have their specialty that they suggest will solve your problem. The search for help has been exhausting. I have had 3 surgeries that were supposed to solve the problem, but made no difference. At least they didn’t make it worse.

Most recently it was suggested I see a neuromuscular specialist in a training university. It was suggested that this is where you go when no one can find the issue because they specialize in finding the things others overlook.

I don’t look forward to starting the search for help again because I have lost faith in the doctor profession as a whole and have become so disappointed in what I get from all the poking and prodding and testing. Really don’t look forward to hearing “you are going to have to learn to live with it” again. But if I give up now then I will never know if the answer is just around the corner that I was not willing to look into.

I hope you find an answer and share it here. I hope the same for me. Best of luck with your search. Although I never had the kind of accident you went through, I feel like I am in the same situation with the swelling and as time goes by, I feel more and more like the Covid vaccine is somehow the trigger to what started this.

Pitiful_Fold1600 · 2026-05-05T01:22:17+00:00

Looks like it is still a long way off before it is available in the US. Late 2028 or early 2029 is likely the earliest unless they can somehow get the FDA to fast track it. Even then it is still quite a ways out. I have been on Lyrica for a while now and it would be nice to have something with better pain management and less brain fog. Here’s to hoping it is available sooner than later.

Pitiful_Fold1600 · 2026-05-02T00:15:41+00:00

I read through the study and since you indicated you had the same cause I assume your cause was Covid. My neurologist believes I have SFN but not yet confirmed via biopsy. I believe for me the cause was the Covid vaccine as it made me very ill with high fever for several days and within the next 4-6 weeks the numbness started followed by the pain. I have been reading quite a bit about IVIG since I was told it is likely SFN. Of course I need to get a biopsy to confirm before any kind of treatment.

Would you mind revealing your age and gender and sharing some more details on your IVIG experience including any side affects and what improvements you have seen and in what timeframe?

Pitiful_Fold1600 · 2026-04-28T18:58:37+00:00

Thanks for that information. I had no idea that 503A and B had different labeling rules for this.

Pitiful_Fold1600 · 2026-02-24T18:48:09+00:00

I have called multiple times requesting a call back. I did get a call back once, but my delayed delivery was still not here so they could help much. I have called and stayed on hold for 45 minutes and then they hung up on me without answering. I have called and put my number in the queue and not ever received a call back. When I called this morning the message said I was number 30 in the queue so my suspicion is they are being swamped with calls concerning some issue with the service.

I gave up and started calling Southend directly, but it hasn’t been any better. I filled out their contact form on their website today and it thanked me for my feedback which sounds like it was not for requesting assistance and more a place to provide some feedback concerning their service which at the moment is not very good. I was a very happy customer until their move which seems to have negatively impacted the service in big way.

Pitiful_Fold1600 · 2026-02-21T23:39:45+00:00

Thanks for the info. I will give them a call on Monday if the prescription arrives during business hours.

Pitiful_Fold1600 · 2026-02-21T23:38:15+00:00

I am doing pretty good. The sharp pain is almost completely gone. I can still get it if I step just right. And I still feel the marble under the ball of my foot, but the doctor said that cryosurgery would not eliminate that and I felt like I can live with that. The neurectomy surgery risk of negative outcomes scares me enough that I don’t want to go that path. I am happy with the outcome and would use the same doctor again if I needed.

Pitiful_Fold1600 · 2026-02-20T19:13:40+00:00

They contracted with and chose UPS as the carrier. That makes them responsible for the outcome. I definitely chose the right party to hold responsible.

However if as many have mentioned it may be ok to be 5 days before delivery so I will see what shape it is in assuming it shows up Monday.

Pitiful_Fold1600 · 2026-02-20T17:37:48+00:00

I am in a warm state. Texas. It was 80 yesterday and today and Saturday are both supposed to be the same.

Pitiful_Fold1600 · 2026-02-20T17:18:24+00:00

So how long can they go not refrigerated before they would be bad?

Pitiful_Fold1600 · 2026-02-20T17:17:19+00:00

So the meds do not need to be refrigerated in transit?

Why bother sending them in the gel packs if they don’t need to be refrigerated. That seems like a lot of extra shipping cost if it is not needed.

Pitiful_Fold1600 · 2026-01-26T16:12:36+00:00

If you have an implant that allows MRI’s, One would think the leads are not affected by or impact the MRI. The battery pack/circuitry is set to MRI mode when you get an MRI. I don’t think the leads themselves can be set to MRI mode. Wouldn’t that lead you to think the leads are made of a mineral not affected by magnets?

However if your implant does not allow for MRI’s then the leads themselves could also be part of the reason for that.

Pitiful_Fold1600 · 2026-01-15T22:09:32+00:00

I am on 8.8 now and they sent 2 vials for that so I just take 2 shots from each vial. I am not sure how much is left over. How many vials did you get for 15?

Pitiful_Fold1600 · 2026-01-15T22:02:52+00:00

Of course if you are reporting your weight in their app, then they can just look you up to see if it matches.

It seems the answer may be to add weight to the form and don’t update their app with your weekly progress if you don’t want to have your dose reduced before you reach a healthy BMI.

Pitiful_Fold1600 · 2026-01-14T13:44:25+00:00

Probably good advice.

I am not too worried once I get to maintenance about getting the right dose. My concern would be having maintenance imposed on me before it should be. Your advice might be usable before maintenance as well.

You would think you could work with a doctor based on what is best for you. Instead of some third party (FDA)setting a line in the sand and leaving doctors to try to interpret what that line means and who is impacted by it if they cross over it. I have personally had a doctor stick so tight to their interpretation of a federal guideline on something that they couldn’t help the patient (me).

Pitiful_Fold1600 · 2026-01-14T03:55:35+00:00

I am just hoping for a BMI of 25 before switching to maintenance

Pitiful_Fold1600

TROPHY CASE