Hi everyone! I am very eager to get your opinion. I am asking: What would you do if you were me?

In April, I had my third life-threatening SCLS attack in 18 years. I was not on IVIG at the time because I wasn't yet diagnosed. This attack was triggered by the second dose of the Moderna vaccine. I am patient #2 in Dr. Druey's study on vaccine-induced attacks.

Now that I know I have SCLS, I am on IVIG. But I genuinely do not know if I should get the booster. These are the questions and thoughts that keep running through my mind:

• Covid is deadly for SCLS patients, unless they're on IVIG.
• The vaccine is not deadly for SCLS patients, as long as they're on IVIG.
• I am on IVIG, so I should be protected from BOTH covid and the vaccine.
• BUT, I've already had an attack induced by the vaccine. Does that make me more likely to have an attack again, even if I'm on IVIG? 
• No one knows the answer to that question, even Dr. Druey, because I've asked.
• Is getting the booster worth the risk of having an attack, especially if IVIG should also protect me from an attack if I do get covid?

I think about this all the time. I was actually scheduled to get the booster at NIH with Dr. Druey last month. I was going to be in the hospital for five days so they could observe me. But I started having panic attacks and cancelled. I imagined knowingly putting myself into a situation that could lead to an attack and it terrifed me.

If you were me, would you get the booster?

Thank you so much for sharing your opinion. There are no other people in the world who will understand.

 Jen

Hi Jen, 

It's really difficult and I don't think I have the answer but I am in a similar position. My first attack just over three years ago was triggered by a travel vaccine and I've had many attacks since then. Although on regular IVIG I still got a number of attacks after my second Astra Zeneca covid vaccine and so am also nervous about having my third vaccine - although it would be Pfizer. So I am trying to figure out which route will have less impact, the vaccine or the covid infection itself as I'm pretty sure I'll have to face one or the other. There's quite a lot of covid here in the UK at the moment so I have taken my kids out of school till for the last week of term before Christmas. I was due to have my third jab early November but agreed at the time with my physician to put it off till January. So I'll have to make the decision then. I am no longer so afraid of attacks as I have faced many and know that as long as I get to hospital quickly and IVIG without too much delay the attacks are always overcome with 2g/kg IVIG over 2 days and then I am well enough to go home. I hope you are able to come to a decision with the support of your physician and be encouraged that IVIG treatment has always worked for me in the event of an attack. 
Best wishes, Caroline 

Hi,

I think I echo a few voices in this group when I say that you're not alone. The fear, anxiety, ptsd, and/or panic attacks. It's hard to be comfortable with SCLS during flu season, significantly more through a pandemic. It's hard to have complete confidence in medicine. Especially when Dr. Druey says "...nothing is full proof...". But I have to echo the late George Micheal as well, "you gotta have faith" in IVIG (and a higher power if your into that). There's a reason I'm on the highest IVIG dose possible. Because I can, I know like a miracle it can and has saved those with SCLS, and as long as I can I will receive IVIG until the doc comes up with another preventive treatment or cure. I understand your hesitation with getting the booster. It's a lot to dissect. My second SCLS attack was because of the flu. I got diagnosed then. I even got my flu vaccine beforehand. My point goes back to Dr. Druey's words. Is it possible that you could have another attack ever again once you're on IVIG? Sure. But it's probably not going to happen and if it does IVIG will probably save your life without the need for life support. Full disclosure, I've received both moderna vaccines and booster with no SCLS attacks and I'm receiving 2g/kg IVIG every 4 weeks.

Getting diagnosed with SCLS stinks, but it beats not having a diagnosis at all and having no IVIG support. Don't hesitate to reach out if you need to talk. 

- Kevin
 

Good afternoon... I've just gotten home from a hospital discharge brought on by what seems to be very similar symptoms 48 hours after my Covid booster (Pfizer).  Doctors have yet to come up with any kind of diagnosis for multiple hospital visits in the same cirumstances (2nd covid shot, flu vaccine in 2020).  I was finally fed up with not knowing, and after many many google searched, I ended up here. So far everyone's experience is the most similar to any other possible condition I've seen.  Not sure I can add anything of value to this thread at the moment, but wanted to post my first message after joining the community.

- (Another) Kevin

Hi Kevin,

I was in effect self diagnosed and was in your position several years ago. The key to confirming your diagnosis is the blood test result when you were ill. If you see Heamoglobin concentration during your illness then this conforms the condition. I think its the same for albumin levels. This shows fluid is leaking out of your capillary blood vessels so the blood volume decreases hence the concentration of the above goes up. It will return to normal when you get better. All the information you need is on the information part of this site but you may have to push your doctors to look into this as I did. Referral to Dr Drury at the NIH is then your next step - he is the world expert on this condition. Cheers, Another Kevin