Please help me!!
AnonymousSeptember 17, 2010 at 2:12 pm
According to my EMG/NCS result I have polyneuropathy with axon loss. All my body muscles are numb. I have muscle atrophy.
I have lyme disease but all the Neurologists I saw don’t believe in chronic lyme disease. I have many other symptoms: low grade fever, weight loss, memory problem, light-noise sensitivity…
Neurologists said I can’t get IVIG because I have axon loss and not demyelinisation. Also they said they don’t think I have inflammation.
Could you tell me how can I prove that I have inflammation? Is there any tests?
September 17, 2010 at 5:07 pm
ANA would tell you if it is autoimmune, l/p would indicate elevated protein indicative of gbs/cidp, crp, c reactive protein would indicate inflamation in the body. I would see a rheumatologist. I am not well read on lymes, just basics. Have you started antibiotic treatment? The infussions are for many months. Your symptoms could be attributed to the lymes, but some with cidp also have trouble with regulating temperature, some have low, others get fevers. My son gets fevers and sweats, especially from Sept to April. There is medicine you can take for axon damage if the damage is new, to regenerate nerve growth. But it has to be recent. Has MS been explored? Have you had the basic blood work mentioned above? It is true, if there is no demylienation, ivig will not repair axon damage, it stops the immune response, or attack, on the myelin sheath.
AnonymousSeptember 17, 2010 at 9:52 pm
Hi Hope…I’m so sorry that you are struggling. You do not need to wait for test results to start “self treating”. I was a mild case, and therefore doctors were reluctant to treat me with standard meds, which had many adverse side effects. There are anti-inflammation foods you can eat…but only if your situation is not “life threatening” and you have time for “nature to take its course”. Look up the Paleolithic diet on the web. This is not a “quick cure”, however, over a 12 month time period, the difference in my health has been shocking. Good luck, and don’t lose hope! Let me know if you have any questions.
AnonymousSeptember 18, 2010 at 3:06 pm
[QUOTE=hope_29]Thank you for the answer.
I had some bloodwork, I think the doctor checked Lupus.
Because my brain MRI is clear, doctors think I don’t have MS.
Could you please tell me which medicine can help with axon damage?[/QUOTE]
Hi, I know you’re wanting answers and wanting them [I]now[/I]! But the questions you are asking pertain to a really specialized situation — YOU! No one here is qualified to give you answers like you are hoping for. Maybe some suggestions…but I am an RN and would not like anyone to mislead to you.
I think you need to get in touch with some Drs., maybe see a couple if you are not happy, do some research on Drs through the Foundation and see where you can go to. You really need a Dr that is going to look at YOU as an individual.
Really, I know how frustrating this can be as I was paralyzed twice – each about 9 months long, before getting a proper diagnosis. It’s frustrating, I understand.
Good luck to you…and Dawn’s post was right on target to you…
AnonymousSeptember 22, 2010 at 12:05 pm
I have had too many EMG/NCV tests to count.
Cleveland Clinic Ohio and North Western University Chicago stated quite clearly “…no evidence on EMG/NCV of demyelination…”
However, a specialized muscle biopsy at Rochester Mayo clinic did show clear evidence of demyelination.
2 of 3 diagnosed a variant of CIDP over multifocal motor neuropathy (MMN). However, I don’t think that is too important. IVIG has been used to treat MMN (motor axon damage.) Enter this search criteria in your browser “nih ivig for MMN”
Try to go to one of the 7 centers of Excellence recommended by the foundation. If you are unable to do that try to find a neuromuscular specialist. General trade neurologists generally (pun intended) don’t cut the mustard for these specialized conditions.
AnonymousSeptember 26, 2010 at 5:53 pm
First, where are you located? Look on the main forum page and see if there is a Preferred center near you. Sometimes it is better to find someone who deals with this more often than a family practicianer. Or even a nuero. Hope you can get the answers you need.
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Please help me!
AnonymousJuly 30, 2009 at 11:31 am
I really need some help on how to help my sister who had been diagnosed with GBS. She has been in the hospital since May 28. Her doctors have diagnosed her with variant of GBS, i.e. sensory instead of the gross motor type. It took forever for them to figure it out as one small community hospital could not figure it out and finally hand her transferred to a larger city hospital. By the time they performed all their tests she was in the acute phase and was screaming in pain as the pins and needles pains she suffered in her limbs were unbearable to the point the the painkillers she was on could reduce the pain to some thing bearable. The type of GBS is the rarest form that the doctors have never came across. They decided to treat her with 6 doses of IVIG. It did not work. They then proceeded with plasmaexchange feeling she was stable enough. They originally planned for 6 but she could only do 5 because the exchange was so painful. It seems to be working as her pains is more bearable but has not disappeared.
But the really issue is her mental state as she has begged God to let her die. She has no more will to live. She is normally a fighter and has had a positive attitude in getting back to her kids. But that gimmer in her eyes is now gone and her little ones (age 2 and 9) are no longer motivators for her to live. Doctors have stated that with all that she has been through they are surprised and amazed at how strong willed she was.
I am also amazed with all the screw-ups that have occurred in the hospital ie: losing her original blood work that was to be sent the the Mayo Clinic to diagnosis if is she has GBS resulting in two weeks lost. As you all know time is precious in diagnosis GBS so that prompt treatement is administered to lessen the severity. The treatment of IvIG was incorrectly administered that could caused liver and heart damage. Thank God it did not as the hospital tested for it after they realized they’re screw up. She also has experienced episodes of seizures where she would turn ash blue and stop breathing for several seconds. It was so scary that we thought she was dying. But she was still motivated to kick this in the butt as her kids were motivating her. But things took a turn for the worse as the hospital called a high alert for swine flu thus my sister felt it was best that they don’t visit her. Just when she thought things were going her way she was finally able to walk a few steps to get the the portable potty she had an accident where she passed out and hit her head on the floor. The doctors diagnosed her with orthostatic hypotension. What happens every time she gets up her blood pressure blood so low that she passes out. Because of this she is now bed-ridden. On top of this she was having severe diarrhea and vomitting for several days that the doctors originally thought it was all different meds she was on. In the end she ended up getting C-difficile from the other patients in ICU compounded by the fact that she had been there for almost two months now. Because it is highly contagious she is quarantined and only adults are allowed to she her. The doctors have told her that she will be quarantined for at least one month. This breaks my heart as it is already one month since she has seen her kids and at the end of the quaratine it will be almost two months. Her kids do not seem to want to talk to her on the phone either as they are having issues dealing the absence of their mother. She broke down crying that her dignity is lost as she needs assistance in using the bed pan, helping her wipe and dispose of it since she is not allowed to leave the bed. She told me she realizes that we take alot of things for granted i.e. being able to go to the bathroom. She also stated that it was fraustrated that she was not able to dispose of the waste herself and at times had to wait 20 minutes for a nurse to come in and take it. Now she is not sleeping at all even with a sleeping aid. Deprived of sleep for so long she is emotionally breaken down. She has told me that she wants to crawl into a corner and die sleeping. It doesn’t help when her husband has visited her for about three weeks now because his is working and his watching the kids with his mother. Their conversations bring no comfort as he can’t sympathize what she is going through and thus says insensitive things like she should be enjoying this peaceful time or that she is a weakling and if it was him he would be over this.
What do say to a person who tells you that her world has collapsed? She realised that she married the wrong person, her kids don’t seem to miss her and it one issue after another. She told me she is fraustrated of being trapped in a body that is not working with her and the lack of sleep for weeks now is killing her.
The glimmer of hope and will power to beat this in now gone. She told me that a part of her has died and she never be the same. At first I thought she as saying it in passing but I look at her and realized that the light that was once there is now gone and she is not the same happy optmistic person I once knew. It is so evident that the doctors have noted it as well.
Everyday I talk to her she cries. She asked me what the average hospital stay is based the messages posted in the forums and whether she will be bed-ridden for the rest of her life because of her ortho-static hypotension based on the research I have done, as the doctors can’t answer her themselves. I often withhold the truth because i know that the truth would be too hard for her to the point I am scared she will “will” hweself to die ifit not want she what she wants hear. She has already refused he meds before.
Please advise me on what to say or how I can help her. Does anyone have info in orthostatic hypotension or how to treat her insomia? Does someone have a success story that I could print and have her read it or read it to her. Are there words of encouragement that you have that I could forward to her. It is sad to think that she has already spent her 13th weeding anniversay alone but I think she will be spending her 46th b-day on August 28th in the hospital as well.
I thank you for reading this blog and providing me with any ideas, words or advise.
AnonymousJuly 30, 2009 at 12:22 pm
I’m very sorry to hear what your sister is going through.
I think all you can do is just be there for her when she starts feeling doing. Depression is EXTREMELY common with any chronic illness, especially GBS/CIDP.
I think you should speak with the dr’s about ordering some meds for depression & that might also help her sleep at night too.
I think it would be wise to have a counselor come in to speak with your sister, especially about her children & to also have some family counseling (with the kids involved). It’s hard for kids to see their mom in the hospital & so helpless & in pain. They are probably avoiding conversation because they love her so much & it scares them to know what kind of pain she’s in. The counselor would be able to help your sister learn to cope with her new life. She’s had a life changing experience & will never be the same again. She will be different but with time, and counseling, I bet more of her old self will return again.
I imagine she feels helpless & hopeless. Those are hard feelings to deal with. She needs a loving, caring, support group.
I imagine your sister was in extreme pain. I think after months of feeling that way I would just want to die as well. The pins & needles feeling is similar to when your leg falls asleep & you try to walk on it. Imagine that constantly lasting for months & being all over your body. It would suck!
I don’t know anything about the hypotension but I’m sure you can find extensive info with a Google search.
AnonymousJuly 30, 2009 at 12:43 pm
I am so very sorry that your sister has to go through all of this stuff. As for the children you said they were 2 and 9, they are young and most 2 year old dont talk on the phone and as for the 9 year old he/she probably don’t know what to say or how to handle mom being in the hospital. I was in the hospital a year ago for over a month and was very ill and my 16 and 13 year old daughters didnt want to talk to me either. it wasn’t that they didn’t love me it was they were mad, mad that I wasn’t home. they didn’t realize or know everything that was going on. I found out my husband and inlaws wren’t telling them everything. when someone would ask them why I was in thehospital they would say they didn’t know, because they didn’t. To say the least I wasn’t real happy to find out what went on during that time.
So tell her not to take it personally they just probably haven’t been told everything or understand it.
My son, Ryan has CIDP and has had to deal with some depression. But when youhave a chronic illness and noting seems to be going right you do get depressed and need some meds or counseling to help you through it. Everyting your sister is feeling is normal- when your so sick sometimes its hard to see past the illness. so please talk to the doctors about meds for depression. Once she is getting those and getting some sleep she will seem more like herself.
I will keep praying for her during my daily prayer. so please keep us posted on her progress. what is her name?? and where does she live?
July 30, 2009 at 1:40 pm
Hi! So sorry your family is going through this. So many thoughts, so excuse the out of order writing. About the feeling of dying, obviously depression, totally normal. Cymbalta is a depression med that also seems to help with pain, ask about is as well ask for a psych consult or the social worker at the very least. There are usually specially trained sw for chronic illness. If she still has pain, Lyrica or neurotnin (up to 3000 mg daily I believe) is used for gbs pain. The seizures seem to be a huge red flag, they usually are not mentioned on the site by other members unless of course a dx that is independant of gbs. Certain meds CAN cause seizures. Have they been dx as seizures? Just a little something to put your mind at ease regarding the care at the hospital. Although it is evident based on your description the hospital DID mishandle some things, they DID treat aggresively, ie 6 rounds of ivig and pp. Some on the site DO NOT get that for some time. Another consideration is pp immediately followed with ivig. Has her progress remained stable, or are there worsening symptoms? I ask this just to be sure that it is NOT cidp, as cidp would necessitate further treatments to keep attacks at a standstill.
C-Diff sucks, my father in-law had that. Nothing you can do now, just be sure once she is out of quarantine you keep a close eye on nurses/docs using sanatizer evry time they enter her room.
About her kids, they are young and do not understand, not to mention frightened that their mommy is not with them. The hospital itself is scary to kids, not to mention seeing their mom sick. Perhaps you guys could try easing them back into visiting her via web-cam. They would still be in the comfort and safety of their home, not having machines all around them and still be able to talk to their mom. If you do not have a web cam on your computer, you can get them pretty cheap, or maybe ask a neighbor. The hospital we were at had computers they lent out to patients, so you could look into that and be covered on that end. Then there would be some real-time interaction.
About the husband, think about these things and see what you think. Although this is not happening to him, it is. His world is turned upside down too, his wife is sick, he is managing the kids, house, work and his own mother. That alone could be a strain. He is confused and angry, probably in denial. You have to cut him some slack, sorry guys, don’t want to offend anyone, but not all men are built with instant caregiver quality. How about a family meeting at the hospital with your sister, her husband, you as a go between, his mom any other possible caregivers and a social worker? Maybe your church or local HS has some volunteer program that could assist in child care or things that can be done around the home. How about a cleaning lady temporarily if the budget allows? What about just asking friends to organize a meal schedule? When my friends husband had a stroke, I organized a plan of asking other friends to pick a day and bring meals over, evrything included, paper paltes, drinks etc. so it was easy. Are other family members willing to help? If her husband and mother are not the type to ask for help, they will need to learn how quickly. That was my biggest problem and I sm still paying for it. Ask for help.
Sleeping…..hard enough while in a hospital, compounded with everything else, near impossible. My son has just now started sleeping better 2 years and 10 months post cidp dx. He is 12 years old, 10 when he got it.
In conclusion, I see the social worker as the first thing you should look into or a psych consult w/someone exp. in chronic illness and families. Second, call the gbs/cidp foundation and have a packet of info sent to your house, it has caregiver info and dr. info. Third, make sure you ask for copies of all records and start a binder for her so she has record of everything when she returns. It will save time and $ and frustration if you do it now. Fourth ask about the webcam for communication with her kids, slowly re-engage them, maybe ask them to make some cards etc. Maybe once quarantine is over, you can pac a picnic lunch and wheel her and the kids down to a serenity garden (our hospital had one) for a picnic. Fifith, acknowledge the husband and let him know he is going through things too! Most importantly, tell her there IS a light at the end of the tunnel and she will come through it!! We did, and now my son is playing like a little boy again. Maybe not as fast as he was and with some pain, but he IS doing it and he is a stronger person for it!!! Good luck, private message if you would like to talk on the phone.
Dawn Kevies mom
AnonymousJuly 30, 2009 at 4:00 pm
Hi alice-cindy, Welcome to The Family!
Wow, you All are going through alot all at once. First I would say take a deep breathe and look at one problem at a time.
You say the ivig wasn’t given correctly-what do you mean? was it given too fast? or what? there really isn’t too many ways it can be given-its an iv that is given usually over a 4 to 5 day period as a loading dose. It is started off as a slow drip then slowly ramped up to a faster drip as the patient tolerates it-proven by 15 min blood pressure checks and temperature checks. If there is a rise in bp then it is slowly dropped back to a more tolerable drip or stopped until the bp is down. Most are given a pre med of benadryl and tylenol along with alot of fluids, to cut down on reactions to ivig. I’m not sure what you mean by the ivig could damage the heart and liver-it is a plasma product, its nothing that isn’t normally in the human body-its just made up of alot of other’s plasma.
The pp took out the good ivig and in essense wasted the ivig. 70% of people respond well to ivig, 70% of people respond well to pp, its not a matter of one being better then the other. They both work to lessen the damage being done to the mylen sheath-the nerve covering. Neither one will totally stop the progression of gbs, it will slow the damage that is being done to the nerves.
Sensory gbs isn’t the rarest form of gbs, it is not known as well as the motor gbs so to speak. I have damage from sensory gbs along with damage from motor. The treatment will not differ from one form to another as far as gbs is concerned though. Its just nerves can regenerate for motor and not for sensory (small fiber neuropathy).
Counseling and more consults are needed to deal with your sisters’ case, in my opinion. She is not able to think straight due to the fact she is sleep deprived, in pain and is missing her old life and has no idea how to live life in the new way she was flung into. It sounds like she needs to have alot of positive support in her corner, and it doesn’t sound like she can depend on her mate to give it to her at the moment. That in itself can be too stressful on her at this delicate time.
If you look at it, she is snowballing with everything that she has going on, the kids not being there, her husband not being there, the sleep not there, the medical issues and all that pain on top of that, its all rolling into one big ball that doesn’t seem to have an end in her eyes. Its very stressful, and even more so when she can’t do anything to make it right and stop it. She feels helpless, when before this illness she was in control.
She will pull through this, she will recover to a new normal life, she just needs alot of positive support behind her. She needs a good dr who knows about gbs. She needs her pain controlled, her sleep-even if its medically given-is the most important thing. Rest is necessary for a good recovery, along with physical therapy and occupational therapy everyday. Her job should be resting, therapy and more resting, and to think of herself at all times, to listen to her body not fight it.
What was her lp protein reading? Her blood being lost is not an important detail in gbs-it doesn’t make the dx, let that little mistake fall away-its just negative energy and does no good.
As for the ortho hypotension, there are stockings that will help with that, as well as sitting for a while before standing up slowly, using a walker helps also. The sensory part of the body is messed up, it controls the heart rate and bp, its going to take awhile for her to get use to the new way her body works and feels. It takes along time to get use to different things like that. The stockings will help, if she can stand to wear them, as they tend to feel really tight and that might cause more pain if she has the touch type pain. So go by her word, not by others’ words or shoulds because they are not her.
There are many pain meds she can get, if she is in fact having seizures-these can be dx with eeg tests to confirm if they are in the nerves or from meds. Neurontin is actually an epileptic med that works really well on nerve pain. Antidepressants are good also, its all just a matter of finding what works well for her. Like everything else with this syndrome, its a very individualized thing.
In my opinion, if pp eased her pain aliitle back in the beginning, she should have another round of 5 treatments now to see if it will help her again. It is the usual treatment protocol.
Ok its time to step down from the box…
Again Welcome to the Family. Feel free to ask as many questions as you have or just vent as much as you need to. We all understand! Take care.
AnonymousJuly 30, 2009 at 9:51 pm
There isn’t much more that I can add here except to say I have been there. I had GBS many years ago and was the mother of 4 children aged 1-9. It was a challenge for all of us and I can understand your sister’s pain….emotional and physical. i can also understand how her kids and hubby are feeling. I couldn’t see at the time how hard it was on my family. They did not want me to know but I realize now that not only was the illness taking a toll on me, but also a toll on my family.
There is also a disorder often experienced by people who have been in ICU for a long time. They become hypervigilant and can’t sleep due to the trauma going on around them both personally and within the ICU. She needs counselling and meds to deal with this issue. Please consult a dr. and a counsellor for her.
Hang in there. It does get better…GBS…Getting Better Slowly. I was totally paralyzed and on life support. 26 years later, I work, raised my family, am enjoying my grandkids. I have residuals but they for the most part, are a part of the person I am today. I live a good life and make the most of what has been given to me.
Please wish your sister well for me.
AnonymousJuly 31, 2009 at 8:48 am
I am a patient with CIDP with nowhere near anything like what your sister is going thru.
I cant offer much more to say b/c the previous posts deliver excellent advice.
I can tell you that I went thru something similiar tho, as a caregiver/ family member. My Mom had cancer and was in and out of the hospital and spent quite a while in a rehab facility nursing home. That nursing home was a nightmare and she went thru much of the same your sister is…especially the bedpan issues and waiting forever for a nurse. That place to me was cold and corrupted and it killed me that my Mom had to stay there for as long as she did.
She went into a major depression and it was the hardest thing I’ve ever been through. Watching her go from this woman full of spunk and spark, that thrived on her grandson, slipped into a woman of complete and total darkness and sadness. I tried everything to get my spunky Mom back. In the mean time, it tore me apart.
You have to take one day at a time. Be there for her as often as you can and let her know that this will pass…that you will be there now and always.
Let her cry when she needs to. Hug her, hold her hand, whatever she can tolerate. I cant imagine how bad she’s hurting not being able to see her kids.
I truly believe that time is key and eventually things will just have to get better.
If you feel she has less that competant or compassionate nurses, complain to the director of nursing or the hospital administrator. We did. And we got a new nurse. AND better care.
I’m so very sorry to hear your story…you and your sister are in my prayers. Take care of yourself, too…it’s hard to be strong when you are mentally exhuasted. I know, easier said than done.
AnonymousAugust 4, 2009 at 7:18 am
I just posted on your thread in the GBS-adult forum, but I just came over here and read more about what your sister is going through. It truly breaks my heart to read this!
When I got GBS, I wasn’t in the hospital nearly as long as your sister, but I had an AWFUL time being diagnosed too, and I missed my children terribly. I remember wondering if life would ever be worth living again, and the orthostatic problem that I also had made me feel irreparably broken for the longest time. Even after I went home, I remember having to lie down every thirty seconds because if I stayed up longer than that, I would faint. That on top of the weakness, pain, sensory problemt, etc. made me feel hopeless for quite a while. It was no way to live!
But as I said before, medication helped my orthostatic problems tremendously, and my residual problems with weakness and sensory dysfunction improved a bit (they’re not gone, but I’ve adjusted)…
Today I am working full-time at a job I adore, plus I’ve got a part-time job teaching at the college level. With reasonable accommodations, I’ve been able to get back into the business of living and growing and setting goals for myself for the future. My husband, children and I survived what was essentially a lost year of our lives, and though our relationships are all different than they would have been without a whole year of constant illness, pain, and problems, we have definitely made it out the other side. Only now we have the most amazing gratitude for every moment we are able to spend together, because I know that I very well could have died back then. I’m glad that I chose to live.
It’s hard to see the light at the end of the tunnel when you’re in the worst part of GBS. Losing your dignity, independence, freedom, and your whole life is an impossible burden to bear. I remember feeling like all of a sudden, life was passing me by and I wasn’t part of anything or anyone anymore. I felt like I had already disappeared. If I hadn’t had my two young children at home (they were 1 and 3 at the time), I probably would have given up. But I’m so glad I didn’t!
Please tell your sister that there IS HOPE. I know it’s dark now, but she has to believe she can get through this. I will keep your family in my prayers; please keep us posted on her progress.
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AnonymousAugust 17, 2009 at 3:35 pm
I’m so sorry to hear about what your sister is going through. It’s heart-breaking to watch, I’m sure. And this much time in the hospital has got to be so difficult for her.
What rare variant does she have? Miller-Fisher Syndrome (MFS)?
I’m not a Dr., but perhaps the hypotension is just the autonomic nervous system impacted by the GBS. Is a neurologist who is familiar with GBS treating her in the hospital?
Praying for her recovery and return home.
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