Scared, three weeks since ivig, ??
AnonymousAugust 13, 2011 at 2:11 am
Ok, I had five ivig treatments, inpatient, from 8-25 to 8-29. I ran a high fever and as with almost everything, seems like I pull the short straw. My Dr. Was out of town during the treatments, I was on the neuro/stroke floor but as flu like symptoms are side effects and they were using ear thermometers, my fever was not registering. My spouse insisted on an oral thermometer and they were shocked, pulled the ear ones, etc. Long story short, I most likely had aseptic meningitis. Ok. Short straw. My Dr. Told me that many times the ppl who have the worst side effects also have the best results.
Prior to ivig, feet like sand bags, felt like they were bound tight, was moving mid calf. Poor balance, walking wide gait, falling a lot. Hands, really fingers, felt like tuning forks, vibrating when touched and dexterity sucked. Lost strength in legs, could not take stairs, lift legs, had to use arms and needed cane to walk. I was improperly dx w MS for 4 yrs but these symptoms began last Oct so it developed fast.
Here is my issue. Sorry to be so long but you need all that to hear this. The ivig has loosened the bound feeling in my feet, balance better and I can walk much better and go up stairs unassisted. However, starting yesterday, this vibrating tuning fork feeling has accelerated, my entire hands up to my elbows are that way now as are my feet and legs all the way up my thighs. I never had this before any place except my fingers. My feet still feel bound, like I am wearing thick wool socks, and more numbness is there now. Also short of breath. I am probably going in for a new nerve conduction test Monday. But, I am scared. For me, this has been fast, and I am afraid I am just going to die. I have a tumor in my brain stem, midbrain, which has been a grade 1 slow growing one. They can change for no reason, and I am exhausted.
Have any of you had this experience and what about gastro issues? I had a endoscopy and colonoscopy a month ago and got a clean bill of health, all blood work you can think of in the world has been doe, intrinsic factor, methamelonic acid, heavy metals, I mean all, and I do have an issue with b12 so I give myself im shots every two weeks. It hurts s bad to use the bathroom, I have no appetite, vomit also, and I am wasting away.
I am sorry to be so long. I just need to see if any other of you have been here. I am just exhausted.
I am using an iPad and it may change words or auto fill, so if something looks weird, thx apple!
AnonymousAugust 13, 2011 at 10:08 am
sorry to hear your story. I relate to much of it tho, not the IVIg/menangitis thing thankfully. My IVIg story started Jan ’10 and for the last 2 treatments (I get them every 3 wks) they have been almost ineffective. Doc started me back on prednisone after I had weaned off them ending March, but apparently they were doing more than we thought.
I am trying to stay gluten-free for the gut stuff, I think a lot of us have that issue and also B12, vit D deficiency and thyroid issues. OH, so fun! NOT!
I have to go for another brain MRI to see if they didn’t miss anything on the first one cuz doc not happy that I am not responding well to the IVIg.
Sure hope we get improvements soon.
My faith, friends and family help me get through this and I hope you have a good support system. God bless you!
AnonymousAugust 13, 2011 at 11:05 am
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.
August 13, 2011 at 2:24 pm
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
AnonymousAugust 14, 2011 at 1:35 am
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.
AnonymousAugust 14, 2011 at 10:10 am
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.
AnonymousAugust 14, 2011 at 10:45 am
[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.
August 14, 2011 at 11:20 am
didnt mean to hurt your feelings or upset you–was just concerned about the part of being unable to eat, not able to go to bathroom and wasting away—just sounded very serious to me—I am no Dr by any means—but just those things alone seemed like you should be getting hospital care. Lori
AnonymousAugust 14, 2011 at 1:43 pm
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.
AnonymousAugust 14, 2011 at 7:34 pm
I am sorry that you developed aseptic meningitis from your IVIg. As you know, it is not a common side effect, but three or four people here have often experienced it, so you are not alone.
I am not sure I understand your time line. I think you were feeling like you were improving until August 11, and then symptoms started to worsen. Is that correct? If so, then it may be time for more IVIg. It is not uncommon to need IVIg every other week, especially at the beginning of the treatment. That said, it also does not mean the IVIg will not work, just that you might well need a more aggressive attack than typical. A typical treatment is the five day dose you got, followed by half that dose every three weeks for three months. Approximately 70% of the patients will show clinical response.
Some people do develop shortness of breath with CIDP, but it is not at all common. While people die of CIDP, it is usually not within a few months of diagnosis. Given your tumor, I would think that any symptom like shortness of breath would be cause for a consultation with at least an advice nurse, if not a doctor.
I cannot give you any advice on your gastro issues. They could also relate to CIDP, but again, it is not at all common. Could the aseptic meningitis or the tumor cause these issues? Just the stress of dealing with both medical problems and infidelity could cause them.
Too high an infusion rate of IVIg can exacerbate all sorts of symptoms. For your next round of IVIg, find out what the highest rate was previously and request (yea, demand) that they not exceed half that rate this time. Doing so helps most people.
Godspeed in your treatment for CIDP and may you find peace for your marriage,
AnonymousAugust 14, 2011 at 11:36 pm
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.
AnonymousAugust 15, 2011 at 10:55 am
Sorry to hear about all of your issues. I wish you the best of luck with everything. I just wanted to comment on the gluten free suggestion. I have been doing gluten free/dairy free since May and it helps a lot with my symptoms. Gluten is a protein in bread and pastas. Some people have celiac disease, cannot tolerate it, but there are a lot of other people with autoimmune issues that benefit from going gluten free. You can go online and look up information about it. Whole Foods has seminars or a group that meets. They also have a personal shopper who can take you around and help you find GF products. I would recommend it, especially if you have digestive issues.
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