I am wondering if any of you suffer from emotional setback ( anger or depression ) after , during viral illness or right before a leak/attack. Leila seems to suffer emotionally with viral illness , she even is very restless in sleep and kicks and cries out during some viral illness while she is sleeping . Last week she came down with a fever and viral illness , now she has a croupy cough and hoarse voice. She still feels unwell . She hasn't had a leak and we anticipate that she will not leak anymore because she's on subQ igg. However before each episode she became somewhat emotionally unstable ( sensitive and crying and angry , about nothing ) so I'm a little worried with this virus . Wondering if any one else with Scls experiences emotional liability before attack or during attack and or viral illness . Thanks

Hi, What a great kid to ride with the punches! My wifeand I have talked at ength about an obvious cognitive interference during attacks which we associate with some cerebral oedema. John

Thanks for your answer, yes Leila is great kid! She has a wonderful personality ! Hopefully she acts this way just because she feels bad and no other reason!

Hi Leilasmom - yes, absolutely. In fact, I posted a question about this same thing, but it's buried deep in another thread. My very first attack was preceded by a huge emotional event and I have always felt there's a connection. It involved a broken heart, feeling unable to love or be loved, and a lot of fear. I could say terror, actually. I think it's important to recognize that every emotion we feel releases chemicals - neurotransmitters and hormones and such - into our systems that affect the entire body. Although we tend to discount it and try to stay in control all the time, emotion is vital information about who we really are. We can't help how we feel - we don't choose our feelings, we just get them, and there is always a good reason for the way we feel. It may not be a rational reason, but it is real for us. For me, opening my heart to love is part of dealing with SCLS. Whether it ever effects my body physically or not, it is worth the struggle. I guess I'm saying I think the emotion effects the body, rather than SCLS causing the emotion. I don't know if this provides you any insight, but I do hope it helps and wish you and Leila the best of luck :-)

Sorry I came to this late but I believe any stress, including emotional stress, has been a major factor in my own SCLS attacks.

Hi I get your emotional and moody the week before my IVIG treatments. It also takes my almost a week after treatment to get back to normal.I have around two good weeks a month but that window is starting to get smaller. I hope your daughter does well, you can lead a normal life, you just need to learn to listen to your body.

I too was immersed in a traumatic emotional state for months before my first attack. I believe that the stress, combined with the upper respiratory infection created the "perfect" storm to cause my body to have an attack. I am no doctor, but the connection is there. Stress has major consequences. Cristina

Stress at work certainly brought on an attack for me. Ambulance had to be called and take me to hospital straight from work.

I can attest to the emotional side of attacks. I suffer depression anger isolation and many other emotions during or precededing an attack. At this moment I am filled with dread fear and apprehension. The hemoglobin and iron level in my body is depletion itself faster than my body can replace them, and my hip as recently replaced because it wore out in less than three years. Now I have necrotic bone in my shoulder!! I'm 46 and it appears I may need a shoulder replacement too? There is no internal bleed. I really hoped there was an answer to my decaying bones and loss of red blood cells. My Dr. will probably answer the same as the physician who accidentally found the necrotic shoulder. See an Ortho, up the IVIG and hope for the best. Wish me Luck! Kimberly

Dear Ritz, Please enjoy those two weeks a month! I will keep you in my prayers. I too once enjoyed two weeks a month. Godspeed

Hi Kimberly, I am sure there are 273 members of this forum shouting, "GO KIMBERLY,!" You have our wishes. John

Thanks a bunch! I sometimes just need encouragement to sort out my plan of attack. I have decided not to accept the standard cookie cutter answer from my Dr. I am going to have to self advocate! My husband is in the pit fighting right along side me. I am having a blood draw at my primary care doctor's office prior to seeing the specialist, to hopefully speed up this process. I really don't like this game of guess the disease!!! I have come too far to give up now. Once again thank you Kimberly

Oh yes!!! Stress is a tremendous factor!!! Previous to my attack I was going through a great deal of stress in my life!! I have always felt it contributed to my attack!! Really amazing what the body can, and cannot handle. I have learned to channel stress in a different way. So very thankful. Health blessings to all, and have a great holiday week-end!!

This topic is fascinating. I had been extremely healthy until several years ago when my thyroid levels began to fluctuate very quickly. After only missing 5 days of work in 25 years, I was off for 5.5 months. I was misdiagnosed with severe depression and anxiety but after no medications worked, I was misdiagnosed with Parkinson's disease. Both the Cleveland Clinic and Barrow Neurological Institute disagreed with that diagnosis and a dopamine scan revealed no findings to indicate that I had ever had it. I suffered 2 concussions within 5 days in May after my first attack of SCLS. I believe they were due to the hypotension caused by the transdermal MAO inhibitor patch prescribed for depression. I was weaned from all antidepressant and anti anxiety medications without any change in my symptoms. I do not believe that these medications were needed in the first place as I have not experienced any symptoms of either disorder since discontinuing medications in May and June. I am an advanced practice nurse and have been supplementing my protein, drinking plenty of fluids, getting the right amount of sleep and taking basic vitamin and mineral therapies. i find that water aerobics really helps with the edema and muscle aches. I walk on the days I don't do them. I also supplement fiber and take my Synthroid although my levels still are fluctuating after being stable for over 20 years. Does anyone else experience changing TSH levels?