New Pt, No Real Dx,reaction To Ivig—

    • Anonymous
      September 8, 2007 at 10:55 pm

      Hello Everyone!
      I’m Very New To All Of This Neuro Stuff. Been Put Thru The Ringer For Almost 3 Months. Since June I’ve Had 2 Abn. Nerve Conduction Studies On My Legs, Spinal Tap, Mri Of Lumbar, And 3 Rounds Of Ivig ( Total Of 12 Days Tx.) After Each Round Of The Ivig, I Felt Much Better But App. 5 Days Later I Broke Out With A Rash That Looked Like Shingles But Was Located On Chest Anterior And Posterior (back) And All Over My Neck, Face And Scalp.
      My Neuro Sent Me To A Dermatologist Whom Performed A ‘punch Biopsy’ On One Of The Lesions On My Chest. Results Were “viral” No Known Cause!?!?

      Mom Of Three, Exhausted


    • Anonymous
      September 9, 2007 at 9:39 am

      Keep looking. It took over a year to get a dx. for our baby, now 3 years old. It is frustrating but you can’t stop looking. We went to 2 major hospitals but the dr. who found out the correct dx. was at a small hospital. I have come to the conclusion, it does not matter how large the hospital is, it’s all about the dr.

      There is a test to see if you are allergic to ivig, maybe someone can tell you the exact name. Also, there are MANY brands out there. I’m sure you were premedicated??

      If at any time, your dr. stops wanting to look for a dx, switch drs. Someone out there will find what is wrong with you.

      Good luck,

    • Anonymous
      September 9, 2007 at 6:24 pm

      hi jerrie
      it sounds like you need to be pre-medicated prior to your ivig.
      i started getting blisters on my chest and face and had some fever. we started benedryl, medrol dose pak and tylenol. i have very little side effects now. i have ivig every other month.
      good luck with your dr and i agree, find another dr if this one can’t make up his mind on your dx. it took me a few to find my new one and i just love the relationship. keep asking questions, there are no silly ones you know!!:D

    • Anonymous
      September 9, 2007 at 7:11 pm


      As Lori said, some people do get reactions to certain IVIg brands – with other brands they seem to do fine. did you have the same brand everytime? I wonder if it was a reaction to the IVIg if it wouldnt have appeared sooner, possibly within a day or two? I dont really know :confused: . Have you had the results of your spinal, is that why they started you on IVIg?

      I know how exhausted you must be, not only physically, but mentally as well – all the unknowns and procedures you have to endure. I’m so sorry you are having to deal with all of this, do you have a good support system?

    • Anonymous
      September 9, 2007 at 9:08 pm

      Jerrie, welcome.

      I, too, broke out in the rash each time but once that I had the Ivig. The nuero always told me that b/c it didnt break out for at least a week, it seemed odd to be an allergic reaction. Well, it wasnt anything else and only happened after the treatment. I got it on my face, neck, arms, chest…sometimes legs.
      It didnt itch so much but it was ugly like bad acne.

      I did the pre med with benedryl and 40 mg of predinisone prior to each treatment. I dont know. I wish I had an answer. Maybe it will get better for you. If the IVig helps, I guess it’s worth the rash. It didnt help me so we stopped it. There was no improvement but there wasnt any declining either.

      wish I could help you.

      good luck.


    • Anonymous
      September 10, 2007 at 2:35 am

      I am so relieved to have found this forum and so happy to find someone reply to my thread. I have felt like my life has been turned upside down for the past 3 months. The unknown scares me to death, and right now my next appt isn’t until Nov. 26. with UAMS in Little Rock.(Unless of course there are worsening s/s or complications, the Dr. whom first dx me with a “VARIANT OF GBS” will be glad to take my time and $$) I was made to feel like a COW at an auction barn at this Dr office.
      I have symptoms every day in my hands and feet bilaterlly, and what frightens me most is the sensations I get in my forearms and calves of my legs. These sensations feel as though my arms and legs are ‘waking-up’ or sometimes feel like being shocked. I often feel the ‘twitches’ from my chest down, those are annoying, seemingly non-stop, but tolerable. I have no feeling in my left foot, the right foot comes and goes.
      What hurts me the most is the fact that I have 3 girls (16,14,10) and a husband of 17 years whom all need me at 100%. They know basically what they’ve heard while I was in the hospital, and of course my complaints. On the outward appearance, nothing is broken, but I feel broken beyond repair.
      My husband has read the book from this Foundation and has been supportive, and a BLESSING with the girls. However, our income is limited to his alone and I feel like a burden. We’ve had to call EVERYONE to delay our bills, very embarrassing.
      GOSH- I’m sorry this is so long, I hope to get to know each and every one of you

      thank you so much for taking time to write back to me


    • Anonymous
      September 10, 2007 at 12:36 pm


      You are so right about not looking broken, but feeling broken up beyond repair inside. Besides all the physical problems as you mentioned, the emotional ones take a great toll on us too. Please dont overlook the signs of anxiety and depression, you have so much going on, so much to deal with, and if you are like a lot of us 😮 we dont want to admit it and have to take meds to help us through this part because we feel we can deal with it. Speaking for myself ….. boy was I wrong:eek:. I for one hate taking meds, and I hate ‘suggesting’ it, but I know how it saved me from myself and saved my family from me:D .

      I too am glad you found the forum, it really helps when you are able to come to a place where you know you are with people who really understand what you are talking about, who know about the brokeness inside, and know that there is no way on this earth that you would [I]want[/I] to feel like this for all the money in the world (so dont look at me like that as if you think im making it up:( ).

    • Anonymous
      September 12, 2007 at 12:36 pm

      Hi Ali,
      Thank You For Responding. I Was Pre Medicated With 50mg Benedryl And Tylenol. I’m Trying To Make The ‘link’ With The Whole Onset Of My Symptoms Due To Some Virus.
      My Spinal Tap Was On The High End Of Normal. I Asked Why Then I Had The Ivig Tx. And Was Told I Had “two Abnormal Nerve Conduction Studies On My Lower Legs” And “if It Walks And Talks Like A Duck, Then Treat It Like A Duck”. The Doc Thought I Was In The “early Stages Of Gbs Or Likely Had A Variant Of Gbs”
      My Next Appt Is Not Until 11-26-07 At Uams–little Rock, Unless I Start To Regress Again. Right Now I’m Extremely Tired, Feet Are Numb, Right Foot Being Worse, And I Have Muscle Spasms From @ Mid-chest Down. The Neuro Called These ‘dermatones’ And Some Days They Are Worse Than Others. I Work In A Fast-paced Clinic And Have Been Allowed To Work As Often Or As Little As Needed As I’m Trying To Keep Insurance. I Have Absolutely No Shoes That Are Comfortable, And Take Different Shoes With Me To Change Every Couple Of Hours–helps Some.
      My Daughter (16 Yrs Old Now) Was Dx With Gbs When She Was Ten. She Was Completely Paralyzed From Her Waist Down And We Were Finally Sent To Ar. Children’s Hosp. In Little Rock Where She Was Admitted And Tested For Everything. Her Symptoms Were Short Lived And She Was Back In School Within A Month And A Half. She Never Recieved Ivig. After About A Week Of Cold, Blue Feet And Not Being Able To Walk She Was Up, Recieved Pt And We Were Sent Home With Dx Of Gbs.
      With That Info, And The History Of The Rash I Had After The Ivig, I Would Like To Fill You In On How My Symptoms First Started.
      Around The End Of May Of This Year, A Nurse That Works With Me In The Clinic, Came Down With Shingles In Her Right Eye. 2 Weeks Later I Thought I Was Having Symptoms Of Diabetic Neuropathy, Starting In My Toes On My Left, I Had Numbness And Pain In My Feet. I Started Having ‘charlie Horses’ In The Arches Of My Feet And A Constant Feeling That A ‘motor Is Running’ In My Feet Then Calves And Working Up To My Hips. All Blood Tests Were Negative, Mri Was Negative For Any Nerve Impingement And I Was Refferred To The Neuro. Now I’ve Had 12 Doses Of The Ivig, Rash After All 3 Treatments And Still Have Lots Of Symptoms. As Recently As A Week Ago My Other Daughter (14 Yrs Old) Was Diagnosed With Shingles To Her Left Side. Should I Consider All Of This As A Coincidence? I’m Going Absolutely Nuts Trying To Figure All Of This Out. I’ve Always Been Healthy, With The Exception Of Having Melanoma 11 Yrs Ago.
      I Know This Is Alot To Ponder. But I Would Appreciate Any Info Or Suggestions. I’ve Already Been Told From Another Gbs Pt Here In Ar To Look Elsewhere, Outside Of Arkansas, For A Good Neuro. Please Let Me Know What You Think Given The Recent History Of Events In My Life-my Family.

      Thank You–and If I’m Not Placing This Message In The Right Thread, Please Pass This Along

      Thanks Again,

    • Anonymous
      September 13, 2007 at 11:00 pm


      Dont worry, your message is in the perfect place – I read your post yesterday, and have been giving a lot of thought. Im not as eloquent as I would like to be and I’m always scared of jumping in with the wrong kind of information or comment 😮 . Im going to try and put to words what has been going through my mind since reading your post…. 😀

      In absolutely astounded that your daughter had gbs and now you have come down with the same! That is almost unheard of …. My best friend had GBS 20 years ago, she later married and her husband was diagnosed last year with GBS, very strange since they arent blood related. Your shingles sounds as if it [I]could[/I] be considered a possible trigger for your GBS, were you told that at all? Taking all this information in, and trying to make sense of it all …… I will tell you what I think (please realize I’m not a doctor or in any medical field, this is just how I’m trying to make sense and understand it all). Shingles is part of the herpes virus, and part of the chickenpox virus – now both herpes and chickenpox are obviously contageous. I have been told different things by different doctors – I’ve been told that I neednt worry, my little shingles ‘bumps/sores’ are not contageous, ‘go ahead, you can play with your children’, was one response. On the other hand, I have also been told that if they burst, the liquid could be contageous = honestly, what do I believe???

      The following are questions that have been mulling over in my mind, ….. Is it possible the shingles could somehow have been passed on, or …… is it at all possible ……. that just like GBS, you can find ‘clusters’ of patients who have shingles that show up in a certain areas at a certain times. I wonder if anyone has done some kind of study, or report on that. Could it be that there is something around that could make people in your area, come down with shingles – it has long been a subject discussed on the forum as to why sometimes there is ,all of a sudden, a number of GBS patients in an area where they have never seen the illness before – often things like water, or pesticide, or something in the air has been thought to be a possible reason for a number of patients getting it in the same area, therefore, could this be true of shingles.?

      This may very well be common knowlege and not new info at all (and I’m just a little slow), or there may be no merrit whatsoever it what I said, however, nothing surprises me at all anymore, and to be honest, I dont think we know the half of it.

      I got shingles the first time, a few years after my GBS ‘attack’, and I know that many members of the forum have had singles either before or after GBS/CIDP. Unfortunately, once we have an autoimmune illness or disease, we often seem to come down time and again with other things autoimmune. I find it a little disconcerting to hear about your one daughters GBS, your shingles and GBS and then, to top it all, your other daughter getting shingles so soon after you, [I]personally[/I], I dont think it is coincidence. I’m sure you know that autoimmune problems run in families – which is very much the case in mine. Did you have allergies as a child at all? I know you say that you have always been healthy, and until GBS, I would have said the same about myself, until recently I found that allergies belong in the autoimmune category – and I have always suffered from allergies :rolleyes: . Horrible thing is that I seemed to have passed all my ‘bad’ genes onto my childrem 😡 .

      I’m sure I’ve forgotten something, but if I think about it, i will post again. let me know what you think – I hope it doesnt sound rambling and confusing. I know if I was to proof read it i will be sitting here all night correcting it, so i think I will leave the post as is and I hope you get the gist of what im trying to say.

    • Anonymous
      September 14, 2007 at 10:26 pm

      you have used. One primary s/e is a thing called ‘puritus’ = blisters of the skin…that’s from Gammagard’s ‘prescription/prescribing information’..

      I had this reaction, tho only on my hands and feet – where I was sort of still sweating…. A quick visit to the dermatolgist quickly got me a ‘menu’ of topical steroids to apply to KILL that really ultimate itch and those blisters! My dosages of pre-meds have since changed from lots of tylenol plus a little benedryl to all benedryl….it’s seeming to work. Knock wood. IT IS ONE VERY TRULY COPLETELY ITCHY THING!…getting the steroid salves…well knocked it out totally within two days!

      That docs say ‘Never heard of it’ is a lame excuse..there should be lots of preliminary testing about what Ig-A’s G’s and M’s a person can tolerate without toxic allergic/anaphalytic reactions…that’s why all brands aren’t the same for all of us. That’s why many of us have to take different sorts of pre-meds…We are different. The ‘reactions’ are LISTED in the fine print of the meds prescribed. Should a hospital change to another brand not specifically described…the FDA policy says: The infusing dispensor should notify the prescribing physician within 10 working days of infusion. The physician then should NOTIFY the patient within 14 working days of the change upon receipt of their notification…Sounds like something’s getting lost in the translations. Not to mention the doc hasn’t read the ‘prescribing information’ in a while.

      One note here? I’ve totally escaped the ‘shingles’ issue. Tho IF at a future date I was diagnosed with that….well with all the other auto-i issues hatching, well, why not one more?

      The hereditary issue is a whole other kettle of fish tho…to get any doc to go that extra step to do testing for genetic issues, well, even if you have a family with connecting potential ‘issues’…the doc has to JUSTIFY the expensive tests to insurance companies…it’s a LOT to justify an the tests are expensive…unless you find yourself lucky to be in some sort of clinical trial that is all-encompassing…

      CIDP is considered an acquired ‘secondary’ immune issue…that puts us in a ‘second class’ status compared to PRIMARY inherited immune issues and taken steps further immune therapies are ‘off lable’ for CIDP. Some CIDP’s are primary immune conditions at base…but only when you get the testing? Round Robin in getting that!? I hope this all helps in any little way !

    • Anonymous
      September 15, 2007 at 8:41 am

      My understanding of shingles is that it is a “dormat” virus that always stays in your body once you have had chickenpox. It is all the same virus. That is why you should not expose young children or anyone “immunocomprimised” to someone who has shingles or chickenpox. My daughter had chicken pox when she was 3 weeks old…I had a 2 yr old at the time who had them and for some reason she didn’t get the immunity from me at birth. When she was 18 months old she had shingles that ran from one side of the chest around her back. The Dr at that time said that her immune system was immature and that is why she got them. (Her husband was a pediatric immunologist) She has never got them again since. They told me that once anyone has chickenpox they are eligible for shingles. Shingles come when the body’s defenses that keep the virus in check cannot do it anymore so the virus takes over. Shingles usually come at a time of stress, illness or other life event. These are when the body’s defenses are at their lowest. At least this is the story my Dr conveyed to me. Working as a nurse in a hospital, I primarly saw shingles on my cancer patients and those whom their illness was very overwhelming and stressful to them. They would break out and then we would have to make sure that no staff who had not had chickenpox cared for them.
      That’s my 2 cents on shingles! They are extremely painful as they run along nerve pathways too. I feel bad for anyone that gets them.
      I also got a rash on my upperchest and neck from IVIG or coincidently about a day or so after an infusion. Mine never itched or anything and it seemed to fade and come back with infusions so I sort of ignored it. (I’m of the mindset, leave it alone and it will go away) Well when I was going to get my port placed it became a topic of discusion. They sent me to a dermatologist who diagnosed it as a “fungus” He prescribed “fungal” pills for 10 days and I had to use a special prescription fungal shampoo as a body wash on the area. It was cleared up in about 4 days and I had had it for 3 months! I’m not saying that is what yours might be but sometimes we have to look beyond the obvious.
      Take Care.

    • Anonymous
      September 15, 2007 at 9:06 am

      You are correct about the virus being dormant Jan, didnt even cross my mind when writing the post 😮 . There is a lady at our church who got the worst case of shingles I had ever seen, we were all speaking about it one day and it turned out that she had never had chickenpox before :confused: , but who knows, it could have been so mild she didnt even realize it as a child, similar to my daughter who only had [B]3 [/B]- yes only 3 😮 spots – and all 3 left scars, aaaahhhh!. I do believe that there is a reason why the shingles suddenly appear, just like GBS. My shingles returned 2 or 3 times a year since 1990 (generally after a very stressful time), and I has only been in the last 2 years that it comes less frequently. I can always tell when Im going to have an outbreak and start taking my medication immediately to try to help lessen the pain and symptoms a little.

    • Anonymous
      September 16, 2007 at 6:57 pm

      truly connect easily the chickenpox to our subesequent blessings of CIDP? Would there be a need for us to be here at all? Don’t think so…
      Tho, I’m reading more and more that there may be other ‘links’ from the CP to other dormant things…and guess what? We are the beneficiaries? Nothing conclusive in any way or form mind you…just that the specially bred lab rats [yes! we have our own special rats!] are teaching them more and more new things about the CIDP variants that they will spend the next 50-100 years learning about. Thank you all folks…I want lots of solutions now?
      Jerrie, what I don’t ‘get’ is that your docs IMMEDIETLY did a punch biopsy on you about the blisters! My derm just looked at it and said ‘clearly framiszille and dorfissle’ I was too humbled at the time to ask her to PLease spell that out so I can make notes? Dumb I know. but I got good salves Topicals that zaped the itch right away and keeping on the salves kept it away…till it didn’t happen anymore.
      That GBS in a ‘family’ is rare, that there might be an ‘environmental’ factor is harder still. At least genetic testing could be done. Environmental testing is a slippery slope…I know as there have been four cases of serious auto-immune diseases in my immediate neighborhood -think the state or county want to test? NO way No HOW! Tried in-house testing,, was marginal w/no clear conclusions…I mean, flat out – what does that DO to your property values?
      There are auto-immune thyroid issues that can connect tho. I’ve now Hashimotos’, an have a relative w/hemachromatosis…seems there IS a heriditary connection to such things…tho vague. I’d not shown signs of shingles – only a reaction to the IVIG intermittently, controlled with the pre-meds.

      Ask questions away. Sure you must have about at least, 400 of them? That’s how I felt when I first found such support. Most folks are kind and patient. We all need to be Kind [to ourselves and others] and patient [with ourselves and others] when we feel like we do. Keep faith and patience, then apply a very LARGE dose of persistence. That is ‘all’ it takes to get diagnosed and treated the best way for YOU.

    • Anonymous
      September 17, 2007 at 11:05 am

      I Really Appreciate All The Information I’ve Been Getting From The Forums. Thank You So Much. Thank You For Taking The Time To Listen And ‘think’ And Respond. There Is So Much To Think About With This Illness. Ali And Homeagain, I’ve Read Your Private Messages, Knowledge Is A Very Powerful Tool To Have Especially When You Feel As Though You’ve Gone Crazy! Thank You Again. Ali, I’m Still ‘mulling’. Lots To Think About. As To The Question Of ‘name Brand’ Medication, I Don’t Have A Clue. All I Know Is I Don’t Want That Stuff Again! I Had The Terrible Headache, Then The Rash A Few Days Later. One Doc Obviously Did Not Read The Drug Facts Because He Was Not Aware Of The Fact That Ivig Does/ Can Cause Mild To Severe Headaches. The Last Round I Recieved I Asked The Nurse For The Info In The Box And The Reaction Was There In Black And White.
      Last Thurs. I Worked 1/2 Day And Was Dx With Bronchitis, Got A Decadron Shot And Rocephin 1 Gm And About 3 Hrs Later My Symptoms Started Worsening. Forearms-hands, Above The Knees Down Bilaterally Started Feeling Like They Had Been ‘woke Up From A Long Sleep ‘again. Little To No Strength, Still Drove My Daughter To Tennis Practice. The Feeling I Get Is So Weird. It Feels Like Touching Your Tongue To A 9-volt Battery. I’ve Started Levaquin 750 And Notuss Cough Med, S/s Improving As Long As My Fever Is Down. I Just Have Lots Of Chest Congestion.
      Now I’m Rambling–just Nice To Know I’m Not Alone Here. I Hope This Finds Everyone Who Reads This Is Doing Well.
      [i]by The Way–do You Guys Experience The ‘dermatones’ ? I Have These Muscle ‘twitches’ [b]all The Time.[/b] From About Waist Down. Very Annoying, But Tolerable-i Guess.[/i]
      [i]hope To Hear From You Soon![/i]


    • Anonymous
      September 21, 2007 at 10:23 am

      more appropriately ‘fasculations’? Big uncontrollable twitches of either the muscles or skin? Web up ‘fasculation+GBS [or CIDP]’ and you will find they go together -unfortunately.
      There are many who feel that supplementing with calcium citrate plus magnesium helps still this occurance. Others suggest soaking your feet in epsom salts as there is magnesium in that which is asorbed directly thru the skin… Don’t forget the methylcobalamin Vit B-12, not the cyanocobalmin 12…the Methyl is more asorbable for some reason.
      You have to watch how much mag you take as its got a s/e of diarhea. My own experience with the soaking was that it drove my feet absolutely crazy! [Burning, itching – you name it!] The pills are ok tho- for me. Takes about 7-10 days to kick in? That twitching can truly drive you nuts tho!
      It’s that or more drugs? I don’t know about you, but I’ve enough of those, thank you!
      HOpe this helps.

New Pt, No Real Dx,reaction To Ivig—

    • Anonymous
      September 8, 2007 at 10:54 pm

      Hello Everyone!
      I’m Very New To All Of This Neuro Stuff. Been Put Thru The Ringer For Almost 3 Months. Since June I’ve Had 2 Abn. Nerve Conduction Studies On My Legs, Spinal Tap, Mri Of Lumbar, And 3 Rounds Of Ivig ( Total Of 12 Days Tx.) After Each Round Of The Ivig, I Felt Much Better But App. 5 Days Later I Broke Out With A Rash That Looked Like Shingles But Was Located On Chest Anterior And Posterior (back) And All Over My Neck, Face And Scalp.
      My Neuro Sent Me To A Dermatologist Whom Performed A ‘punch Biopsy’ On One Of The Lesions On My Chest. Results Were “viral” No Known Cause!?!?

      Mom Of Three, Exhausted

    • Anonymous
      September 10, 2007 at 8:06 pm

      Hi Jerrie,
      I’m sorry you’re having a horrible time with this, rest assured we’ve all “been there.”
      I remember the first time I received IVIG was when I was completely paralyzed and on life support. I had IVIG for 5 days in a row, a couple days later I guess I came down with a sick looking rash on my behind. My neuro said it was from the IVIG–skin rashes/reactions are common. Usually benadryl or something is given with it to prevent these. After awhile it goes away. They put something on mine, I don’t know what.

    • September 10, 2007 at 8:35 pm

      My son also would get rashes on his skin after each ivig, even with the premed benadryl. Sometimes even days later. Since you had the biopsy, I wonder if it is in fact a reaction to ivig, it sounds like something unrelated. This condition is so odd, and the ivig so complex, who is to say that maybe the virus was from the ivig. I just never thought to get my sons rashes tested and just assumed it was a reaction. Sorry I could not offer you any concrete info, but know that I will pray for you as we do for all on this sight! Best wishes,
      Dawn Kevies mom 😮

    • September 10, 2007 at 8:39 pm


      Check out Dr. Shawn’s name, she too lives in Arkansas, Jonesborro or something, just look on the members list. Maybe you guys live near each other. She is a very nice lady and has medical experience being a doctor and all, but most importantly, she understands as she too suffers from the plights of gbs.

      Dawn Kevies mom 😮