Exacerbation – scared
June 2, 2012 at 2:42 am
I’m a little freaked out today.. the past week I have been having a bad exacerbation of my symptoms.. I got my kiddos cold and then strep throat, and worked a ton with all of that.. that ivig 2 weeks ago didnt’ seem to help a lot… it defintely helped, but not as much as usual with being sick and all
everytime I have an exacerbation it seems to hit a different spot.. this time it hit my swallowing/heart rate/intestines HARD… it is getting really hard to swallow, and i’m scared.. Also.. my hands have been completely back to normal (no more jelly fingers like I had for months before the ivig) since the 2nd round of ivig… and today I grabbed the crayon to color with my daughter and don’t have dexterity, same with cutting food with a fork and knife..my entire right arm from shoulder dow is numb and wierd (like it doesn’t belong to me) I just got IVIG yesterday and i am PRAYING it kicks in soon… I am having awful painful shocks and burning pains too.. I just don’t know what to think or what I should do.. I guess just sit and wait until this IVIG hopefully sets in.. I am so afraid I’m going to decline more or IVIG won’t work anymore.. anyhow.. I don’t have anyone who I can sit and relate with in person, so thought I would vent…
June 2, 2012 at 3:36 am
Autonomic functions are watched closely and regularly when hospitalized. For those at home, it’s important to keep your neurologist informed when there is any deterioration of function, and to be prepared to get emergency help if necessary. Have you had any breathing difficulty? Is your doctor aware of your swallowing problems?
June 2, 2012 at 4:17 am
bny—didn’t you get a different type of ivig yesterday? Maybe you should check with your Dr to see if that could have anything to do with these new symptoms.
ivig is the first thing you have tried, I know it has been working for you so far–but just to ease your fear remember there are other treatments you can discuss with your Dr in the event the ivig doesnt work for you anymore.
Its fine to vent here–that’s what we are here for.
I think if you are having difficulty swallowing, especially if it’s something new you should call the ER and see what they recommend you do. good luck—thinking of you, hope it gets better for you soon. Lori
June 2, 2012 at 7:54 pm
Are you doing any better today bny? did you end up going to ER last night? Hope all is well—keep us posted. Lori
June 3, 2012 at 12:01 am
I am sorry to hear you are struggling right now! I share the concern of previous posters that if there are any issues with breathing or heart rate you should seek medical attention immediately- I have been where you are and had many relapses due to colds/infections – some I was hospitalized for as I would get short of breath and rapidly lose ability to walk and some were dealt with as outpatient getting 5 day loading doses of IVIG ( in addition to my maintenance IVIG) not fun! Also one time I had a relapse we were traveling in Jackson hole and Yellowstone ( with a cool 3 wheeled wheelchair no less) and I used a high dose prednisone taper as an emergency rescue. I do not tolerate the side effects well and do not want to use long term, but it works very quickly for me and is helpful in a pinch- – have your doctors tried you on prednisone or solumedrol ever? I am thinking of you and wishing you well.
June 3, 2012 at 3:54 am
Thank yall all so much!!! I can’t tell you how much yalls replies mean to me, especially in my freak out mode like I have been in this past week!!! I was a nervous wreck most of today.. woke up thinking MAYBE swallowing was a little better.. hands DEFINTELY felt better thank goodness! However, I was completely freaked out by the swallowing.. legs/hips almost back to normal. but, then this evening I took my pills and I could swallow SOO Much better! I picked up crayons to color with my daughter and had my dexterity back mostly.. Talk about a RELIEF!!! this whole thing is so crazy!!! I’m still not back to what I was a few weeks ago.. but I”m only 2 days post IVIG.. Usually it’s 4 days before it really really hits me well.. what a roller coaster!!
As far as breathing goes.. I haven’t felt any difficulties breathing this time.. i have had chest pains the entire time, especially with deep breaths or when my heart starts racing.. and I get it during IVIG too, though a different kind.. Difficulty breathing for two months that gradually worsened is what landed me in the hospital for my first IVIG back in december.
Shellbones – I’m sorry you have had to go through this, but man it is nice to hear that someone else had gone through similar and is doing ok! I have never tried any steroids whatsoever.. I wonder if I should?? Since they think I have multiple autoimmune issues.. it seems like it could help!
Lori- thank you – that helps me calm down a bit hearing that there are more options out there if this doesnt’ work.. I stress about the immunosuppresants with work and all.. if it will be smart to continue where I am.. but I guess i’ll cross that road when/if it comes to that. I was worsening before this new brand of IVIG.. I was just hoping it would “kick in”.. how many days until yall feel it kick in usually? for me its generally around 4
GH- my dr is aware that I have had “awkward” swallowing since this all started.. they did the autonomic testing on me a while back which was postive (heart rate in the 160’s – whew I felt bad when that was happening)! My resting heart rate when this all started was in the 140s!!It was awful! No difficultly breathing this time..Thank goodness! I can still walk and talk thank goodness, but I think my dr isn’t as concerned due to that as well.. Though they are treating me which is what matters!
Thank yall.. I’lll keep yall updated.. I hope that the IVIG continues to work in the coming days.. and I think i’m headed towards steriods/immunosuppresants or something in the near future.. i’m having too many relapses it’s just not well controlled!! this is stressful!
June 3, 2012 at 3:38 pm
bny–glad to hear from you, i was worried about you. Hopefully the ivig continues to work for you and you won’t have to try anything else, but it’s good to know you have options if it doesn’t. my ivig usually took a few days to kick in too.
You had your new brand ivig the same day i had my first rituxin—-keeping my fingers crossed maybe we both will be lucky with these new treatments 🙂 Lori
June 4, 2012 at 1:40 am
Thanks Lori!!! I am sure hoping for both our sakes that we find that magic “pill” and we will have the peace of mind that it will help us and make it work.. this whole uncertainty of what the next day brings with symptoms is hard- mentally! :0!!
AnonymousJune 4, 2012 at 10:01 am
Have you been in my life this past week? I too suffered through a summertime flu, diahreaa, sore throat and the works. Your case sounded worse than mine, I got to feeling better after 4 days, but the tightness in the chest, and the rest of it sounds so similar.
I rested pretty well this weekend, but then I could not sleep last night. The sun is close to rising as I type. Up all night.
Sometimes we are the dog and sometimes we are the hydrant.
Hope you get to feeling better,.
June 4, 2012 at 7:39 pm
I am glad you are feeling better! Would you believe as I write this I am fighting a cold too? Started on Friday – I have been using zinc lozenges and drinking gallons of tea but having a lot of sinus and ear pain setting in- trying to avoid antibiotics . On the plus side, since I have been on the Imuran although I am a bit more prone to colds I no longer have major relapses when I get sick . Dick S I love your quote about the dog and the hydrant – I needed that today!
June 5, 2012 at 2:34 am
Dick S- haha, I also like your fire hydrant comparison!! I hear ya there! 🙂 As far as the insomnia goes – I cant even nap if I want to anymore, since all of this started (i work crazy shifts, so a nap would be great at times) but I take lyrica before bed and don’t like taking it in the daytime as it makes me feel funny (don’t wanna work or drive kids after taking it) and the limbs “asleep” sensation is CRAZY when I don’t have the lyrica in my system.. during an exacerbation its even more so – ick! I fall asleep no problem, but within minutes i’m awake shaking my limbs and just annoyed!
Shellbones- You know as much as I don’t want to be on immunosuprresants you are right.. if it meant I had fewer relapses, that would be worth it, as you can treat most infections with antibiotics if needed, but things can go scarily wrong with relapses that might not be fixable… defintely makes it look more appealing and less scarey- thank you for that perspective! Hope you don’t have to get on antibiotics this time – ugh germs… not fond of them one bit!
June 5, 2012 at 2:35 am
I meant to add- I was in the sun this weekend, and ever since my most affected areas feel like I have a prickly pear poking them.. And im not sunburned at all.. It is a really wierd sensation, and strange that heat and sun exacerbate it so!
June 5, 2012 at 2:49 pm
Whenever Emily would have an exacerbation her dr would order a 5 day loading dose so she could get back on track.
June 5, 2012 at 8:10 pm
Thanks Kelly- I have been wondering if that is what I need.. ever since my first relapse since the 2nd IVIG I feel like each IVIG helps tremendously, but I have never felt quite as amazing as I did after that 2nd IVIG.. and feel like it works less and less, I have been wondering for a long time if a second loading dose would help me get back to that AMAZING feeling I had after the 2nd one? Does it seem like a lot of people do have another loading dose? I’d rather that than adding on immunosuppresants I think!
June 5, 2012 at 11:30 pm
bny–i had ivig loading doses for over 2 years, first every 12 weeks then every 6 weeks, went to Dr dycks recommendations of 0.4 gm per kg weekly for 16 weeks then back to loading dose( 2gm per kg) right up until last week when i started rituxin–so it’s definitely not unheard of to get multiple loading doses. Lori
June 6, 2012 at 1:24 am
For the first year we had loading doses once a month, then we tapered by 10 grams a month until we were at 1g/kg (maintenance dose) In order to eleviate side effects, we divided the 1g/gm over two weeks, so 35 grams every two weeksover one day as opposed to 70 grams over 2 days once amonth. Thats just what worked best for us.
June 6, 2012 at 1:57 am
Thanks so much yall.. Hummmm. I may have to bring that up to my dr.. it’s hard since I don’t know what an “acceptable” level of dysfunction is.. when to push for more improvement or when to just say being this dysfunctional is “ok”… I hate bugging them, but I would love to be as close to normal functioning as possible! I can’t get over how much this last dose helped.. Thank goodness, I have been a complete mental wreck the past two weeks, my symptoms got so bad – the swallowing thing is freaky,and I couldn’t even hold a crayon well again/my dexterity was getting awful again – can’t hold a mascara wand etc… I feel like I am teatering on the edge of pretty bad dysfunction a lot.. changing the ivig to every 2 weeks is helping, but the getting sick a lot is setting me back big time. THANK GOODNESS now I can swallow and write almost normally again.. I may go ahead and mention loading doses to the dr.. of course i have NO IDEA how I would have time for that… stressed!
AnonymousJune 6, 2012 at 3:56 am
For some having IVIG more often makes symptoms less. I have IVIG every week and it works for me. I also have my infusion at home making it easier for me. Some home health infusion nurses can come on the weekend or after work so you may need to check into this option. See if your health insurance will pay for this. Think of having infusions as your investment in you, your health and your quality of life.
By reading about IVIV frequency you can see increasing it can be beneficial and you may need to tell your prescribing doctor about it too.
I hope the increased schedule is make you feel better soon.
CIDP is an odd disease and tends to morph without rhyme or reason.
June 6, 2012 at 1:38 pm
Hi buny, there is no acceptable level of dysfunction. It would be different if you did not respond to ivig and feel better. That would likely be damage that would stay. But you describe improvement when you get ivig. Now the key is to just kick it in the butt and start repairing. As I have mentioned before, you have to stay ahead of it or it is like you are treading water, jogging in place getting nowhere. The loading doses for a year (for us anyway) was what allowed him to heal so wonderfully. As we tapered we watched for any change so that we could adjust accordingly. You should be able to expect your doc would want you to be at your best level. I don’t understand why some docs are so reluctant to give ivig as needed. I can’remember who said it, but someone on the site said that ivig is hard to come by valuable or something like that. While it is expensive, life is invaluable. The docs don’t take into consideration the long term cost of taking care of a person unable to walk, eat etc. A nursing home is $8700 dollars amonth, not including drugs, any procedures, therapy etc. It just seems that if someone responds to ivig or whatever protocol that works for them, there should be no hesitation. So keep pushing for more ivig!
About the amount of time, you could get a fanny pac and do it at work and then have the nurse disconnect during lunch, after work whenever. Once you would get established, there is even the option of the sub q, which you could do on your own whenever you want during that day. Don’t get discouraged, keep communicating with your doc and push for what you feel will make you start healing.
AnonymousJune 7, 2012 at 11:12 pm
scared too! had my 1st loading dose in February then weekly for 6 weeks then we went bi-weekly and the roller coster started. I started getting bad about 12 days into the cycle and did not see much rebound until about 48 hours after the infusion. I short cycled the treatments a couple of times as over time things degraded. My doc agreed to go back to weekly after my exam this week. I had my “normal” 42g infusion 2 days ago as I was starting to bottom out again. This morning SCARED me as I was as bad as before I started treatment – Barely walk or lift my arms, could not lift a cup of coffee or turn the ignition in the car. I was scared to death that of where the bottom was or if the IVIG had become totally ineffective. True as clockwork the IVIG started to take effect this afternoon and I have returned to at least a mobile state. I went from a fit active gym rat to very weak and at times immobile since last September. Hating this at the moment and willing to go “all in” on a risky bet. Sent my paperwork to Northwestern today for stem cell consideration.
AnonymousJune 7, 2012 at 11:32 pm
When I started IVIG I got 3 loading doses in a row and then went back in 2 weeks for another 3 days of loading doses. I wonder if your “loading doses” are enough for you? You may need more frequently. Yes, some docs do not know that CIDP may need to be kept hard hitting for 3 to 6 months at the least. My neurologist is the only one on my city who does such hard hitting of IVIG. I went from using a walker to using 2 forearm crutches to my cane to now walking unaided. I went from barely being able to brush my teeth to working in the yard but it took along time. Having to live with needed treatments does get old fast. I think you need to realize you want the best for you and it may mean several days a month having infusions.
Do you have family or good friends close by? Someone to talk to? To help out if needed?
Being diagnosed with CIDP is scarey and so is not being able to do simple tasks. I have to be careful of over exerting myself, not getting over heated, staying out of the heat and relaxing. We need to remember our body is not well and it needs lots of TLC. Please see your doctor and let him know your concerns. I usually take a friend with me when I go to appointments. If I forget to bring up a concern my friend will for me.
June 8, 2012 at 12:55 am
We all know Emily is an exception – certainly NOT the rule. When she had her 1st relapse (when her dx was changed from GBS to CIDP) her dr ordered a 5 day loading dose. On the 5th day, she was discharged from the hospital & set up with home health care. The dr ordered her to get IVIG 3 times a week for 2 weeks (at 4 grams per kg PER infusion), 2 times a week for 2 weeks & then 1 time a week for 2 weeks. She relapsed (her eye started turning in towards her nose again – it’s always been her eye that goes first) during the 2nd week of every 2 weeks.
At that point, we realized she needed IVIG 2 times a week to maintain. So we started over again with another 5 day loading dose of 4 grams per kg & then started the 2 days of IVIG per week.
She was 4 at the time & I’ve read that kids can handle a higher dosage of IVIG at each infusion than adults can handle. I believe, with every ounce of my being, if we didn’t treat her as aggressively as we did, she would not be the “normal” kid she is today. I believe she would have been left with a level of dysfunction that I’m not comfortable with.
That being said, since I have seen what IVIG can do in my own child – I personally do not believe that any level of dysfunction is acceptable. I believe one should ALWAYS strive to be as close to “normal” as possible. You should NEVER give up fighting to be able to live your life to the fullest.
Kelly (I would write more but Emily & I have to do a quick clean up of the house & she started 5 minutes ago & is giving me the stinky eye)
June 8, 2012 at 9:35 am
aww, thank yall so much.. I can’t tell yall how much I appreciate yalls support and advice!!! I only got a loading dose one time (when I was inpatient in the hospital) and it was only a 3 day loading dose at that (not sure of how many g/kg as It was all foreign to me at the time).
I dont’ feel 100% comfortable with the dr we see.. we are so thankful though I am an atypical case of CIDP that they did try the IVIG in the first place.. thankfully it worked and worked AMAZINGLY!
The further away I get from the loading dose, i defintely feel like it doesn’t work quite as well, though sometimes more than others.. ..
I feel like the dr we see is more of the old school “doctoring” and doesn’t like hearing recommendations from their patients.. though when I told them it was wearing off before the 3 week mark and having relapses they did respond to increasing it to every 2 weeks.. I am afraid to step on any toes I think.. as this dr at least did try the IVIG.. I know someone at the infusion center that went to get a 2nd opinion and they put her IVIG on hold due to her being an atypical case (also of CIDP).. I hear she is quickly declining and doing pretty badly since the IVIG.. SO, I think after hearing that I am extra afraid to “rock the boat”
I wish I could be with a dr that I felt more comfortable with.. but am scared to risk a change of diagnosis, revoking of the IVIG or anything that could make inurance wiggle it’s way out of paying for the IVIG!
I want to feel like I did after that 2nd IVIG all the time, which was almost back to my old self.. So, I think I will ask them if we could do another loading dose.. as I just hate teatering on the edge of major dysfunction!!
Yall are all right as far as seeing it as an investment in my life, families life etc.. it is just hard with being the bread winner/insurance holder, Mom, the one who cleans, cooks etc.. then I have a very demanding job on top of it all.. We dont’ have any family to help us, they are all out of state.. with a 14 month old and a 2 year old we are obviously busy!
My husband goes with me sometimes to the appointments.. honestly he doesn’t understand why I want him there, and it is kind of a fight to have him go with me- he just says he doesnt’ understand.. But I was alone at my first dr appointment who said that I may have ALS (1st dr before any emg).. and that was pretty awful experience.. ever since I hate going to any appointment alone!
Does heat bother anyone else?? I can just melt after showers it seems, and then if I am out in the sun, or if the sun is even shining through the window when it hits my affected areas it just tingles and burns like crazy!
Pat- I hear ya.. I have always been very active – surfing, hiking, mountain biking.. then I was pregnant for 4 years on and off and just getting back into running/jogging and excited to “get my body back” haha! who knew!!
limekat- I was also there once – barely able to brush my teeth.. coudln’t carry the kids at all, and even temporarily holding one would weigh me down so much I coudl’nt get my legs out from undernreath me to walk with the added weight! I am SOOO thankful IVIG Is working.. but I agree, there is room for improvement no doubt
Kelly- did Emily ever have pain behind her eye when she moved it?? I swear I have had one eye that lags a little since this all started.. and its almost like it can get pulled, it gets SOOO sore, it is really painful to move it when I have exacerbations! … she had swallowing difficulties as well right?? I would really like to do that type of loading doses.. I think I would feel like a new person!!!
Thanks again yall so much for your help!
June 8, 2012 at 12:00 pm
Yes, Emily had pain behind her eye. It’s a sign of inflammation. Her eyes would also get dry. You really should see an eye dr too! She did have swallowing issues & GI issues & bladder control issues.
You need to remember that your dr works for you! Your insurance (that you work your butt off to have) pays him. That means you need to be able to say “this is what I think”, or “hey…can we maybe try this?”, or at the very least “I haven’t been feeling great”.
You need to take control of your health care. You have to be your own advocate & if you aren’t doing well…you need to speak up.
If this was one of your kids what would you do? You would fight tooth & nail to get them the treatments they need. You need to apply that to yourself because your health affects your kids.
AnonymousJune 8, 2012 at 6:20 pm
Go see another neurologist as a consult. This way he isn’t your doctor…yet. Feel him out. Ask front desk receptionist how many CIDP patients he has had before you go. Get a copy of your medical records and take them with you. Your regular neuro doesn’t have to know you had a consult and if he does it was just another opinion. Have a girlfriend go with you to the appointment. Read all you can here and we will cyber help you along the way. You deserve the necessary infusions to keep you going as full time mom, bread winner, house keeper and everything else. You need to “rock the boat” because you need to for your family and you.
I have trouble swallowing, weird eye sight that store florescent lights make worse, walk a tad sideways and still knock my mouth with a drinking glass (I use straws for drinking..try it).
Stay out of the heat and hot showers. It makes CIDP kick in more.
Stay cool and with your “ya’ll” I’d say lots of Ice Tea, girl.
June 11, 2012 at 3:51 pm
Thank yall so much!!! That is interesting kelly, that emily also had pain behind her eye- did they ever say it appeared like she had attacks of Optic neuritis?? I saw a neuroopthamologist a few months back – he said it appeared as if I had ON in the past (in the eye I had gone to a suburban opthamologist about in the beginning- at the time he said it was fine- i had no idea 2/3rds of the time it looks fine on their exam when it is acute).. The neuro opthamologist said he sees eye involvement like mine at least once a month from CIDP patients (there are only 6 of these drs in Texas, so he sees a lot of wierd stuff apparently). Each appointment is about 5 hours there ugh.. but I do need to head back again for follow up
Do yall know if I do go get a second opinion if the dr puts down a diagnosis for billing purposes that isn’t CIDP that insurance can “choose” to take their diagnosis and then “opt out” of paying for my IVIG? that’s my biggest fear!
Kelly – you are right, I would spend everyday in a dr’s office fighting if it were my kiddos… that is a good point.. and most of all above anything I need and want to be here for them for the long run!
Limekat- funny you mention that – I had weeks where I would kind of drool, and spill drinks on myself, either missing my mouth or just mouth dysfunction in general! Before I got my first round of IVIG I tried straws.. but (how sad is this) I coudln’t even make enough suction to suck through a straw!!! It took all the effort I had and seemed SOO hard I coudlnt’ even do it.. same thing If I blew my nose it would go all funny ,… I was WEAK! Now I can use straws and when my swllowing gets bad it is easier! interesting about your eyes- bright lights hurt mine all the time now too!
Thanks so much for all of yalls help (this last round of IVIG has worked wonders)however I am 11 days out and do feel it starting to wear off.. I danced around with my kids yesterday – showing my daughter some old ballet moves, haha.. I haven’t been able to be that p hyscially active in a year.. felt SOOO good.. I just want to go for a jog!!! though that would probably be a bad idea! I miss working out!
Limekat- haha I know, I don’t realize how much I say yall (when I lived in the northeast everyone would laugh at me for it haha) now i’m back down here and saying Yall just makes sense! 🙂
Thanks again so much for all of yalls help! I really appreciate it!!
June 11, 2012 at 5:44 pm
Emily was not dx’d with optic neuritis. She was dx’d with cranial nerve inflammation. At one point the eye dr said if her eye was not better in a year that we would have to do surgery to repair the nerves & muscles. Luckily there was enough improvement that she didn’t need to have the surgery.
June 11, 2012 at 5:48 pm
Forgot to add…she was dx’d with cranial nerve inflammation & opthalmoplegia.
Here is a good link explaining opthalmoplegia:
June 12, 2012 at 4:08 am
Thanks so much Kelly!! I appreciate it!!! I just got the report from my neuro opthamologist (I am going to an internal med dr tomorrow to get established with a PCP.. I have only been seeing my obgyn.. but honestly can’t get past the fact that she did something she wasnt’ supposed to do with the IUD.. and that seemed to all start this all)..
Anyhow, the neuro opth note said I had papilledema and pale optic discs bilateral.. along with eyebrow and eyelid ptosis (something I have noticed since this first started, but didnt’ even mention to him – no o ne else ever notices.. but apparently he did)! I also found that my serum gamma electrophoresis showed polyclonal gammopathy! Not sure of the signficance of that either.. but it’s something none of them ever mentioned.. I think getting my chest scanned might be a good idea!!! ick!
June 12, 2012 at 12:21 pm
At what point in all of this was there a mention of polyclonal gammopathy? If you had blood work taken after receiving IVIG – it could affect your blood work. IVIG would show abnormal levels of immunoglobulin in any blood work done.
I can’t remember – did you have a brain MRI? It may explain the neuro opthamologist’s findings.
June 12, 2012 at 9:43 pm
Is it a papalodema or pseudo papalodema? Was optic neuritis confirmed? My other son had both of those. First neuro opthamologist left out the word pseudo, so we thought he had a tumor or ms. Second one and third said pseudo, which means it appears to be a tumor but is “fake” True optic neuritis (not caused by several drugs, in our case minocyclene, no one even made the connection, they just assumed ms or lupus) is usually indicative of ms or a tumor. In fact minocyclene and other drugs actually cause lupus/ms like symptoms, optic neuritis and papalodema (pseudo) Once we were off of the minocyclene and his ANA and mri was ok, we had our answer, it was the antibiotic. Is ms or lupus a possibility? If so, ms and lupus both use ivig for treatments, that could explain why you do have a response to it.
June 12, 2012 at 10:15 pm
If it is a papalodema, maybe that is what is causing the polyclonal gammopathy, a tumor? Did the doc suggest that? He is the only one that has given you some concrete answers. Perhaps if it is a papalodema and it is removed, the symptoms will stop. When we were told of the papalodema dx for my other son, I started researching and honestly it seemed like a better option than the cidp or ms. I think they go through the nasal cavity and remove the tumor or I think it can even be shrunk at some specialized institutions, I think oneis in Illinois. For once God was going easy on us and we just had to remove the antibiotic and all was fine. When will you get more info from the doc? Keep us posted. Wasn’t someone else on the site being tested for cancers etc. as the cause of their cidp symptoms?
June 13, 2012 at 9:43 am
I went though extensive cancer testing as a cause for my cidp. It was due to having an antibody show up in my bloodwork that may or may not be an indicator of cancer. Cidp/nerve damage can precede the actual cancer by as much as 3 years. In my case they have been unable to find any cancer yet.
June 13, 2012 at 11:34 am
Bny- it is all so confusing- just to reassure you the polyclonal gammopathy is constant with receiving ivig- it reflects the different gammaglobulins you are receiving with ivig- not sure why you have papilledema it can have a number of causes and is not specific to one diagnosis- I would definitely follow that up . Part of the problem of getting a lot of tests for anyone is that many people have abnormalities that are benign and that they would have done fine without knowing they are there- you spend a lot of time chasing these down – I myself had to have a bone marrow biopsy as my lumbosacral MRI showed an increase in signal in the bone marrow- turned out to be completely benign but since these tests are so sensitive they pick up everything!
In regards to your fear of having your diagnosis changed and no longer having your insurance pay for IVIG I would not worry about that as any neurologist would be aware that the IVIG has helped you and this is well documented in your case- sometimes this in itself helps to support CIDP- since you are an excellent responder and tolerating well they really cannot justify denying you of this beneficial treatment.
Hope you continue to feel well
June 14, 2012 at 9:12 pm
thanks so much yall!! The polyclonal gammopathy was found when I was in the hospital when i initially recieved IVIG.. it was found in my csf.. no one ever told me anything about it, but in their note they said it was likely a result of the IVIG.. I guess sometimes I wish looking through my records I would find a clue that would explain this all and it would be as simple as one surgery or one something and be cured! 🙂 One can dream huh?
As far as the papilledma goes- I have had three MRI brains- no tumor was ever found.. I had a spot on one of them – they just said a UBO (unidentified bright object).. I am thought to have possible celiac diease (all of my symptoms started after the IUD incident but that was followed by major GI symptoms and weight loss) when I read that you can have neuro symptoms with the celiac issues I have since (for over a year now) been on a strict gluten free diet, anyhow apparently if you have neuro celiac a lot of those people have UBO’s on their MRI’s too!?
I wonder if the neuro opthamologist coded that on accident- He told me I had nerve loss, looked like possible past optic neuritis on my left eye.. but said my right eye was normal. he didn’t even MENTION ANYTHING about papilledema, though he ordered a new MRI brain with orbits (which was normal).. I would have thought he would mention that- in his note it said I had pale optic discs BILATERAL, after him telling me i only had that in my left eye, i wonder if he got click happy and accidently checked that.. I was supposed to follow up with him in 2 weeks from that appointment, but each appointment lasts about five hours and they dialate you everytime, so I just cancelled as I just don’t have the time! But with reading that note, I guess I need to go back, and make sure he talks to me more face to face!! Also he is the only dr that has noted my ptosis! I have told everyone that I noticed my eyelid fold change form the beginning of all of this (i went to put on eyeshadow one day and thought how wierd my eyelids were totally differnet), they feel so heavy- when i’m more symptomatic they droop even more (eyebrow and eyelid).. he noted this in his chart without me ever mentioning anything.. huh?? I sure wish I fit into a pretty little box of something treatable(weather it be cidp, MG, etc) so that my mind didn’t wonder and start thinking of the bad things!!
thanks again for all of yalls help!! I’d be lost without yall!
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