Scared, three weeks since ivig, ??

I am not sure what gluten issues are like. I need to look into that.

I did have a bilat mastec in 2004 after dx with breast cancer (short straw). I had owned my own business, was forced to close it but felt out of whack for awhile so I went for a neuro psych test work up before looking for work. The brain tumor was showing in the MRI but no one told me. When I had a hard time with the job in 2006 they did a MRI and it flagged the same area but that it had grown, and that was the first time I had heard of it. Even with that, it is small, but in the stem, they do nothing. Mine is next to the drain for the hydrocephalus. If it grows it is so uncool, but the brain surgeon I saw sent me to the MS clinic where he dx the MS, wrong, without really any supporting evidence. My vit D is ok as is my thyroid. I wonder about lactose too.

This is complicated by a spouse who decided to unburden himself at 37years of marriage in 2008 and confess to 25 years of infidelity. The last 13 years leading up to the confession were spent with what I thought was a dear friend, and there had been two other friends over that span, along with several known persons and ppl who knew and did not tell me. The absolute pain, heartbreak and desolution from all this can never be put into words. One person climbs out of a sewer to rinse off, pushing you in to drown. He is in therapy for sex addiction, I to keep from killing him, laughing but not really. I have no doubt this is and has complicated my health, even before I really knew, because your spirit knows neglect.

Betrayal is unbelievably destructive, and this has so many ppl involved.

Ty Lori, I totally get that. No, I am not looking for medical advice, but rather shared experiences. Truly, it has seemed that if there was a low percentage of ppl who would get the bad effect or experience, that has been going on for me since about 2002. I think I could be a poster child for how much stress can really affect your health.

As far as the gastro issue, I went to my gastro Dr. when the B12 deficiency came to light. I am so overwhelmed right now, I cannot think. At the start I asked to be put into the hosp. and gone over thoroughly. I wish they would do that and may push for that. I still am not released by the oncologist and have not dealt with the brain stem tumor. Honestly, I want to get the cidp under control but I have no Idea what is happening. As this all started escalating Thurs., I am concerned with how quickly it is going. However, I am surprised that you have never heard of anyone having this much trouble with ivig. I have found quite a lot of ppl who either cannot tolerate this treatment or have to have it more frequently. My biggest concern is the way the nurses and Dr.s at the hosp. seemed to not know what to do, and I worry if I have something else. I have complete confidence in my Dr., he was just out of town.

What I want here is shared experiences, not advice nor dx. I do not think that I have tried to replace a hospital or Dr. By coming here. I am well cared for, have great insurance, it costs me nothing to go into the hosp or for treatments once I pay $225 annually. And, I do a lot of research.. All I am lacking is hearing ppl’s experiences.

I came here to find out if others had gone through cidp as badly as myself and or ivig. I was not keen on ivig and it still scares me. If you look up aseptic meningitis it clearly states you can gets it from ivig and it is considered a drug induced issue and possibly viral. You cannot water your way out of it.

I thought I may find a place here of camaraderie but instead I feel alienated and chastised that I shared too much. I am going to leave but want t you to know why before I delete mt posts. Lori as a Sr. Member, which I have no idea what that means, I am surprised you said what you did to me. I have been upset all night. Am I too sensitive? Probably, but I am sick. And scared as I noted. You honestlly think I came here for YOU to dx me? How in the world can you think that? I am spending my life in hospitals and dr offices? I cannot go to Duke right now and deal with the brain tumor because I need a break. I need to concentrAte on the Cidp. Not to be rude to you but you seem to have the least knowledge of any person I have encountered thus far dealing with my illness, and I am most certainly not looking to be upset this way.

[QUOTE=Lori222]sorry to hear of all you are dealing with. I have never heard of anyone going through all that due to the ivig—and i have never heard that the more complications you have -the better it will work???
sounds like you have had A LOT of stress these past few years-more than your fair share–and stress is the worst for these inflammmatory auto-immune diseases.
The hurting to go to the bathrom, unable to eat ,etc you should probably be in the hospital for—-do you have some sort of infection ? Sounds like serious stuff going on—-and you should be getting some professional medical advice. We here are great for unloading on,great sounding boards and support–and even to discuss tests, whats worked or not worked etc but should not replace hospitals or medical needs, which from your post it sounds like you really need. hope everything works out for you—good luck Lori[/QUOTE]

To be clear, did you miss that I see drs, will see one monday, had a total gastro workup, etc? Also that I have had every medical test I can? I put that in my message so that I could share that I do SEE the dr and we are very vigilant in our efforts trying to find out why this is happening. Heck, seeking a board of ppl like this who can possibly tell me their EXPERIENCEs so that I may find another route to look for.

These boards provide that purpose as well. You are not dxing but sharing how you were affected and what you found. Plz be careful. This is very hurtful and alienating. I have been upset all night. I took the time to provide too much info to let you know that I am trying to find out why. This makes me want to give up.

No, it is not that Lori, bu rather I see a lot of ppl on here with digestive problems. I am frustrated, scared and doing all that I can at this juncture to find out why I am sick like this. Cidp can affect the nerves in your gastric area and I wonder how many ppl have this and also, my illness is complicated by this stupid tumor. My lumbar punch had a protien count of 123, and normally that would point to cidp with no problem but it also is a marker for the brain stem tumor, which the brain surgeon had said was a hamertoma initially, a non tumor that is more of an accumulation of surrounding tissue that will not grow. Nothing about my diagnosis has gone easily and it has been like being sucker punched over and over. I am sorry if I am too sensitive. I need this forum for support and to find out if anyone else has been here and if they uncovered something that we have missed, and maybe we should test for it.

Ty so much Mark! That is what I am looking for. So much has gone down in my life so quickly. There is a lot more, ischemic colitis that put me in the hosp for ten days in 2006′ and then regular colitis put me in the hosp for another ten days in 2007 while a possible recurrence of breast cancer also happened in 07 and I lost my dad. I left my job on permanent disability in 06 due to cognitive issues, my career has been in finance, and the mis dx of MS, along with the brain surgeon telling me the mass in my stem was not a tumor, only to find out this yr I do NOT have MS, I DO have a tumor and this bizarre disease, with this treatment that scares the life out of me, as does the alternative treatments, has overtaken my reason.

Yes, the aseptic meningitis has been spoken of here and as I have done research, it is not common, but when you get it, you are most likely to get it on repeat treatments, with it getting less of an effect until it may not happen.

You have the time line correct, and as I have tried to read and understand what others have shared, what you are saying was what I wanted to know. When the dr. returned my call Fri. he told me what I shared, it could be regeneration, or relapse. A new nerve conduction test would help determine that but I am with you in the fact that if this needs boosting, I need to do that now. I took the label off the container of my ivig and had all the hospitals notes sent to me so I can see exactly what was given to me. With my medical history, that is one thing I have learned, get and keep copies of all labs and medical records and dr.s notes. Nothing is done to me that I do not have copies of. This growth in my brain stem was first noted in 2004 and no one told me. When an MRI was done in 2006, there was growth that caused a flag and also is why I went to a brain surgeon. He dismissed the growth
saying it was his Opinion that it had not grown but that the slices in the new MRI were thinner causing it to seem bigger. That is when I made sure Ibahd copies from that point forward. He had to eat his dx with the high protein and it is also why I am getting a second opinion on the tumor, but only after I have the cidp under control. I am so overwhelmed.

The added stress of my marital situation, well, I have to find peace in this. I have to. He is getting help, we are staying married, there are things that bind you other than love. He does love me, I am so heart broken, I cannot feel very much emotion and will most likely never truly give all again. But I have to find peace. I am working on that. Ty for your words of encouragement and kindness.

When I call the dr. tomorrow, I am going to push to go in and see what we need to do right now.