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Do we need residential security services only for underprivileged residential
I live in a very posh side of the town, but lately, I have heard about robberies. Should I get residential Security?
Likely CIPD from GBS
Hi everyone, I’m new to signing up but have read all of the useful information everyone gives here for awhile.
Ok, so the 1st time which started in like the beginning of April 2022. My pain started in lower back, and then numbness/weakness to my pelvic area to where I could barely walk. Then the pain went to my feet before up my legs. Had foot drop on both sides. Pretty much lost all strength in anything from the waist down, and couldn’t walk, legs & feet burned agonizingly uncontrollable 24/7, the slightest touch would make me want to scream even like a sheet moving a little across my leg. That went on for around 4 months. Now if I don’t take 5 meds I get pain and stiffness from them. Bearable any pain though thankfully. The only thing I had that was off was my EMG which was everywhere my neurologist said. My sister happens to work for a non local to me neurogist, so she showed her and she said GBS and mine eventually did too.
This time around was the beginning of this January and I
woke up and thought I had just slept weird on my hand and this was not super late either like 2 am maybe, so I moved and went back to sleep. Woke up and wrist just doesn’t work at all. I can move my fingers, not perfectly though. So they said partial radial nerve palsy which emg also showed. It also showed pinch nerve in elbow and another place that they said was strange because I haven’t been injured over there. Both neurologist are on the same page again and are saying CIPD and that IVIG treatments are the way to go now.
I just wanted to get some of y’all knowledgable opinions. I want to make sure I go through the right treatment because that 24/7 severe pain and not walking before I would never wish on anyone ever. Thanks, everyone in advance! 💙 and of course I’ll be around if I need to fill in any blanks and sorry it’s so long.,
CIDP and Parkinsons Disease. Any connection?
Hi. I have had CIDP since 2016. Was lucky to be diagnosed early and have had a good reaction to treatment with mainly my left foot and lower legs experiencing tne verve tingling. Recently it moved to my left foot and my balance sarted to be affected. Went from IVIG every 4 weeks back to every 3 weeks without much change. Other symptoms have presented, includung a n odd gait to my walking, probably due to the balance issues plus overactive saliva production. Have had a slight tremor in my ring finger on left side.. I do not see my neuro until May and have read that getting started on meds for Parkinsons is crtuical for holding off disease progression. Wondering if I should press for a sooner appointment? Anyone have any experience with both CIDP and Parkinsons? any input would be appreciated, Jim ????
Not sure what’s happening
Hi, I’ve had CIDP for about ten years now IviG had been working pretty well for me 75mg of Privigen fortnightly, but now it’s only last 8 out of the 14 days. My right side of the brain wants to go to sleep and having memory issues to, I’m now back to shuffling when I walk but still have the sensation of my legs collapsing from under me. Finding this very frustrating. Any ideas could be helpful. I’m in Australia.
Possible Treatments For Miller Fisher/GBS after Discharge Long-term
I am seeking any helpful information or tips as to any treatments or types of therapies that helped anyone, since I feel very alone and confused about many things regarding my condition. But sadly, the lack of medical support I have received as well might have kept me in the dark about advocating better for myself. I was diagnosed with GBS in April 2022, but in August 2022 was when doctors narrowed down the GBS diagnosis to include the variant Miller Fisher. My condition left me almost paralyzed- I have severe muscle weakness on both legs, weakness on my right arm (left arm is much better but still fatigues), and residual right facial paralysis. I received 5 days of IVIG and 5 days of plasma treatment during an almost month-long hospital stay. When I received the plasma treatment, I was able to move around alot more- I was able to use both my legs, wiggle my toes, lift my arms up. But two weeks after getting discharged and at home, the weakness came back and I became the state I was before the plasma/ivig treatment again (basically wheelchair bound, unable to move both legs, unable to wiggle my toes, unable to use right arm). I have been getting physical therapy once a week, and I started occupational therapy a couple of months ago (August 2023). However, I don’t know if I should seek more ivig/plasma treatment or more aggressive pt/ot therapy? I have tried talking to my neurologist and physical medicine doctor at Kaiser, but because I am young (25yrs, female), I am dismissed a lot of the times. If anyone has anything that might be helpful I would appreciate it! As I am nearing my 2 year mark, I want to go full force to give myself a better possible recovery. I do have sensation everywhere, there was no nerve damage from studies I got done, and CSF did show oggliconal bands which is what led to the GBS diagnosis. I am able to walk a little (30ft) with a walker, and do small things here and there around my house, but still require assistance with most things. Any info/advice is helpful and appreciated! THANK YOU!
Info/tips on residual GBS symptoms?
I was diagnosed with GBS in November 2023. I mainly had a lot of weakness in my legs, and tingling down my spine. I was in the hospital for three days and given the IVIG treatment. My spinal tap and blood work did not show GBS, and MRIs/CTs looked good. The doctors decided it was GBS based off of my symptoms. After the hospital I did get nerve testing and it was confirmed I did have nerve damage. It has been two months, there has been still weakness in my muscles especially my legs and some of my arms. It has improved but some days are worse than others, with the weakness. I have started physical therapy. The past week I began having electric shock feelings everywhere, tingling, and my arms will just feel really weird and feel like I have been laying on them when I haven’t. My muscle cramps have also been coming back and have been happening everywhere. My energy is definitely a lot better and has improved a lot since November. I found out from the forums on here there can be residual symptoms. I was wondering if anybody had any information on residual symptoms they experienced and any tips on them? My neuro has only seen me once back in December and didn’t want to see me again until May. I feel like I haven’t really been provided much information by providers on the aftermath of GBS, and I am just not really sure what to look out for/be concerned about. Any advice/info would be super helpful!
Vyvgart to treat CIDP
Hello – has anyone been treated with Vyvgart for their CIDP? My neurologist is pushing this treatment and I can’t really find much about using Vyvgart for CIDP. It is approved to treat gMG. I am worried to go on a drug like this because it causes your immune system to be weaker and you can end up with other infections (common UTI and Upper Resp Infections). I currently get IVIG every 5-6 weeks and have no symptoms or problems with my treatment. I am trying to find out more about Vyvgart and CIDP before my next appointment with my neurologist so I am armed with information. Any information would be greatly appreciated.
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