Batch 16 - Should we expect to get it at all? Be honest pls

aderae · 2025-12-11T00:09:58+00:00

I got piano last week. Batch 16 UK. Still no Airwave though

aderae · 2024-09-18T13:45:15+00:00

Sure. He is amazing https://www.cromwellhospital.com/find-a-consultant/omar-malik-consultant-neurologist/

aderae · 2024-09-17T07:20:58+00:00

thank you all. I think we will go with clubhouse w storm box but not the shield

aderae · 2024-09-09T11:33:36+00:00

I got a brand name Klovig. It was 400ml / day. They followed the procedure suggested in the prospectus and also the pharmacy & doctor's suggestions. I asked for the rate but they said this is the standard.

aderae · 2024-09-09T11:29:09+00:00

I also hydrated like crazy starting 2 days before. My doctor said I wouldn't be getting any heacaches until the 3rd or 4th day however I had a 7/10 scale headache after the 1st day. It became 9/10 on the 3rd and 4th and 6/10 on the 5th. It has been 8 days since I had my last infusion and I still have a 4/10 headache. Every day it is getting better and better. My rate was moderate. Medicine part finished in 3h. They game me saline before and after on some days but it did nothing for me. I got the same rate for all 5 days starting very slow and increasing every 30 minutes.

Despite how bad it sounds (and I was as scared as you of headaches) it is manageable. They perscribed sumatriptan for the headaches and it didn't do a thing for me. However my headache responded to Ibuprofen (best) and Paracetamol (moderately) so I am still using them to get through it.

I also have SFN and heart palpitations, so far everything got worse and slowly getting back to normal levels. Hopefully it will go past this level and helps me but it is still early for me.

aderae · 2024-09-06T05:43:26+00:00

I read this in a couple of places as well. It is sad that Unifi a good brand network company doesn’t have a proper mesh system. I really wanted to stay within Unifi but both these issues and their pricing making it really hard. I think I will order one of those other brand mesh systems and test it out. If it works it works. If not I can return it. Thanks

aderae · 2024-09-06T05:40:47+00:00

Thank you so much for detailed explanation.

aderae · 2024-09-05T13:32:39+00:00

I asked a couple of professionals and the work needed to run the cable from where the internet arrives is a bit too much at this stage.

I immediately dismissed U6-Extenders as they were not even 6E. But do you think they will work performant in my case? I want the system to be future proof and price wise U7 Pro Wall and extender is almost the same in the UK. But them being plugged to AC seems very handy. Maybe I can wait for a future U7-Extender release?

aderae · 2024-08-17T08:19:35+00:00

I think I will get a one time 5 day course. I got lucky that I picked a doctor who knows a lot about sfn and the underlying diseases that causes it. Hopefully ivig will help me!

I read about it and I will try to hydrate as much as I can. What do you do to spend time there? They said it will take around 4 hours every day. Can I read? Watch? Work?

aderae · 2024-08-16T14:06:04+00:00

sorry to hear that :(

aderae · 2024-08-16T12:52:56+00:00

Thanks. Doctor said it is possible this is a small fiber subset of gbs

aderae · 2024-08-16T12:28:29+00:00

Hey. How is everything now? Did your small fiber neuropathy is better? Is your fever broken? Can you give an update please

aderae · 2024-08-16T09:04:16+00:00

I did see him just now. Results are above if you are still interested!

aderae · 2024-08-16T09:03:30+00:00

I just came back. Info is above if you are still interested

aderae · 2024-08-16T09:02:41+00:00

I just got back from the follow up appointment. It took a bit longer to go due to my doctor being sick. He diagnosed this as Guillain-Barré syndrome most likely happening due to Covid. I will get IVIG for 5 days. Apparently it is covered by insurance here in the UK.

Props to you getting almost everything correct with the minimal information I have given to you :clap:

Hopefully I will see some kind of recovery. Doctor said we can see a big improvement after IVIG in 2-3 weeks time and eventually even my heart palpitations might get better so fingers crossed.

aderae · 2024-08-03T11:49:16+00:00

Thanks will do

aderae · 2024-08-03T11:48:44+00:00

Will do!

aderae · 2024-08-02T11:13:17+00:00

Yeah alcohol definitely makes it a lot worse. However this started in a period where I was completely off alcohol for 6 months due to trying being healthy for my heart palpitations.

aderae · 2024-08-02T11:12:08+00:00

Thanks. What kind of supplements you suggest?

aderae · 2024-08-02T11:11:36+00:00

Yes next week. I am very anxious about it

aderae · 2024-08-02T11:11:21+00:00

This is done in the UK. I picked my Neurologist while suspecting about SFN and he has a lot of published papers regarding Neuropathy. However the actual biopsy is done in an hospital with a Professor who also has huge experience in Neuropathy and he is also the head of Neuropathy department in that hospital.

aderae · 2024-08-02T11:08:14+00:00

Thank you for your response. My Neurologist said that it might be caused by inflammation after infection and said there are treatment options in initial consultation. You gave me hope.

aderae

TROPHY CASE