Daughter’s leg and headache pain

Hi,
First off, I think a member named Brandy may be from Jersey, maybe she can give you the name of a doc, try to pm her. I do not know much about gbs (we started as gbs and moved on to cidp) but Gene on this site as well as Ali does. Have the docs said this is a recurrent gbs attack? I beleive Bell’s Palsey is also immune related, is it possible the docs think this triggered another gbs attack? There also is this issue where post polio type things happen with people who have had gbs a long time ago. The fact that she cannot breathe however, would to me in my little bit of a brain say it is an active attack. HAve they started a full loading dose on her this time around? (2g/kg) how many days has she had it? You say she is not eating, I assume they are keeping her hydrated!? (if I have learned anything, I have learned NOT to assume, ASK)!
Is she on a ventilator, regarding the statements about the breathing and the doc saying it is a severe case? Perhaps another round of ivig could be tried or pp first then another ivig?
My son complained of INTENSE headaches, and leg pain. I am not sure if it is only gbs related, it could also be from the ivig. My son had the aseptic meningitis reaction for about three days post ivig. I think you mentioned she is many days past ivig, so I do not know if the ivig can be blamed on the headache. My son’s leg pain was in his ankles, calves and hamstrings. Good luck to you and others more experienced with gbs will respond I am sure!
Dawn Kevies mom

hi mpdagostino & welcome,

if you are sure Robert Wood Johnson is better, make the move along w a new neuro. for neurological pain you need neurontin, not dilaudid which is a narcotic. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. was she given more ivig? it works on 70% of us. if she continues to get worse, as it seems, she needs to try plasmapheresis if doc approved.

NJ Dr. Tahmoush, he is good. He has an office in St. Francis Hospital in Trenton. Dr Tahmoush’s main office is in Philly.
his Trenton,NJ phone # 609-599-5792

Dr.Peter Barcas
190 Jack Martin Blvd. Building B-3 Brick, New Jersey 08724 732-785-1500
He also has an office in Neptune. He’s a great Neuro and I highly recommend him.
He goes to Brick Hospital and Jersey Shore Medical Center.
They must stress Dr. Barcas or they’ll be given to the other Drs and they aren’t any good.

John J. Halperin in summit [overlook hosp?]. also knows cidp.

take care. be well.
gene gbs 8-99
in numbers there is strength

mp,

I think that “Bells Palsey” is just a generic name given if the face becomes paralyzed, and this is often the case when the paralysis reaches the head. Also severe headache and extreme pain in legs are all common to many GBS sufferers. Unfortunately I had all three too. So quick answer ….all are or can be related to GBS

Please remember that the IVIg will not have necessarily stopped the progression of GBS, so, just as your daughter has done (if it is GBS), the progression can go on to reach its worst point – up to 4 weeks – so the worst point should not go further after around the 4 week mark. The IVIg is there to help with recovery. However it is important to remember that, after 2 weeks of the initial IVIg infusion (normally 5 days), if the patient has not started onto the road to improvement/recovery, the latest suggestion by the experts is that another IVIg infusion be given (another 5 days).

I gather from what you said that her spinal fluid was elevated? There are also things that you should be watching out for …. such as ….. that they are making sure that she doesnt get drop foot; that her eyes are kept lubricated ALL the time; that they check at least twice a day to see if she needs a bowel movement and she will probably need an enema if she is paralyzed; that she is unable to control her body temp and will probably be too hot – care should be taken to keep her cool as with GBS one is not able to ‘sweat’ as such and keep your heat under control.

Please feel free to give me a call if you would like to speak. I live in VA so I am on east coast time. My number is 703 365-8231

Matt,

The bowels are probably not totally evacuated, and that can cause a huge problem a couple or so weeks down the line. Unfortuantely I had that problem, it wasn’t caught in time and caused horrible pain, anxiety and stress on top of everything else. One of the patients I am visiting currently had the same problem, thankfully her hubby had been expecting it, he askes her everyday about it even though she cant speak, she nods or shakes her head slightly – she has not had to endure the awful pain and anxiety associated with the constipation because enema’s have been done when needed, and more drastic measures have not had to be made.

Please stay strong! When my now 11 y/o was dx, it was so hard on me seeing him in icu, so I understand your pain! Regarding the in and out confusion from day to day, gbs DOES not affect the brain. More than likeley the cocktail she is getting is causing the confusion. Dehydration also alters how you think. Kevin would get confused from day to day as well. Keep an eye on the infection CLOSELEY! Maybe even ask for some preventive iv antbiotics after the pp. Maybe the pp washes out the infection? (I do not know if antibiotics can be effective while getting pp)

Bring her baby in, I assume the child is too young (a Baby) to be stressed by the hospital surroundings? Perhaps you can make a poster board to hang where she can see it with pictures. Maybe even a video, to help her keep in touch with her childs daily happenings.

I am not sure if this applies to all patients, or just seniors, as my father was in the hospital last summer and he was confused, they called it sundowners I think. That might be an explanation for the confusion, just a thought.

Kevin also had a problem with constipation, it lasted about 6 months. Be careful and do not use laxitives as the bowel becomes dependant on them, we used stool softeners and prune juice (the awful nonm diluted form) and an occasional, occasional laxitive.

Watch the pic line, as those can become infected as well. Make sure every time the use it, an alcohol wipe is used on the end. Kevin was initially going to get a pic line, but I asked for a port as he has cidp and will get continuous ivig for some time. It was not a practical option for a 11 y/o.

Just so you know, Kevin and many, many others on the site repair and get back to pretty good, some even normal. I would say 16 months out, and Kevin is pretty close to normal with the exception of some pain in his ankles and wrists when he overdoes it, and I mean overdose, playing with his friends like a wild man! Your family will get there!!!

HAVE FAITH, You ALL will come out the other end!!! IT gets better, and quite honestly, for my son and I, it showed us the real importance of life. We look at things totaly different. It has made us both more compassionate people (still working on the husband LOL, some things never change!)
I will pray for your daughter and for a steadfast recovery!
Dawn Kevies mom

I also should mention, ask GENE about neurotnin and dosing, he knows about that. The dosing is probably way less than it should be. Others on the site are experts with pain meds and can help you immenseley!
Dawn

mpdagostino,

dawn knows me well. as i was reading your post, i was planning to ask you how much neurontin she is on. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength

Understanding your daughters words a little more clearly, [I][B]may[/B][/I] be an indication that things are on the upward swing – [I][B]if[/B][/I] (and only if) that is the case, then there will be days that seem to be worse than the better days (does that make sense?) The road to recovery is a case of 1 step forward 2 steps back, and so on – unfortunately. Please make sure that you, and your daughters husband continually ask questions, if you are not sure of something, ask, ask, question and question again, and most importantly, if there is something you feel is lacking, or something you feel needs to be changed you NEED to be heard. I have been visiting a lady for months now, who’s husband questioned and insisted on things, and he got results and the very best care for her. This family was [B]very[/B] proactive, and I can see a difference in the patients who’s families have been proactive, and with those who havent been.

Matt,

Miller Fisher is quite difficult to diagnose, simply because other forms of GBS have the double vision associated with weakened muscles around the eyes, slurred speech etc. due to cranial involement. Apparently, recent research shows that MFS is associated with with antibodies to a component of the myelin sheath known as [I]GQ1b[/I], and over 90% of MFS patients have these particular antibodies.

There is a relatively new book out by the American Academy of Neurology called : [B]Guillain-Barre Syndrome[/B] – [I]From Diagnosis to Recovery[/I] by: Ds. Gareth J.Parry and Joel S.Steinberg. In it it describes the different varients and forms of GBS. It is quite an informative book and may be worth your while to get a copy.

I am going to take a few passages out of the book I mentioned in the post below. These are some of the symptoms associated with GBS (Miller Fisher is not mentioned here).
[quote]

[I][B]Page 11 (Chapter 2 – What are the Effects of Guillain-Barre Syndrome?)[/B][/I]

…….
Head and neck muscles can also become weak. These muscles are controlled by a set of nerves callled the cranial nerves, which come directly off the brain and supply various parts of the head and neck with sensation and strenght. [B]Facial weakness is the most common cranial symptom, affecting about one-half of people with GBS, resulting in an inability to smile or fully close the eyes[/B]. These symptoms are due to involvement of the seventh cranial nerve. Facial weakness may develope shortly after limb weakness, or it may be the first symptom. It is usually symetric, but occasionally it may be so asymmetric, with one side of the face drooping more than the other, that the affected person may be thought to have [B]Bell’s Palsy. Weakness of the eye muscles can cause double vision. D[/B]ifficulty swallowing and handling saliva developes about 15 per cent of the time because of involvement of the ninth and tenth cranial nerves. …………….

[B][I]page 13 & 14 (Pain in Guillain-Barre Syndrome)[/I][/B]

GBS is a disorder in which the dramatic nature of the paralysis over shaddows all other features. Pain is an integral part of the disease, but sometimes it is not given sufficient attention. In some studies, pain has been reported in more than 80 percent of people with GBS. It is frequently underappreciated and undertreated by doctors, expecially in the intensive care unit, where people with GBS may not be able to communicate about their pain. They may have been incorrectly told that they do not have pain because pain does not occur in GBS. The pain of GBS can occur during the acute phase of the illness, and may even predate the onset of weakness. Pain can also occur during recovery and rehabilitation. …..

(pain in the accute phase)
…….Typically, the pain of GBS is located in the region of the spine and the upper parts of the limbs, including pain between the shoulder blades, in the lower back and buttocks, or around the hips and shoulders. ……

…..
Pain in the [B]acute phase of GBS is called nociceptive pain[/B], not neuropathic pain. Nociceptive pain is the type of pain that warns us of tisue damage; irreparable damage might occur if it did not hurt to walk on a broken leg. The perception of pain offers important protections agains injury. By contrast, neuropathic pain is pain that arises from damaged nerve fibers. It serves no useful protective function. [B]Neuropathic pain occurs during recovery[/B] from the acute phase of GBS

It is important to [I]distinguish between nociceptive and neuropathic[/I] pain because the require different treatments. [B]Nociceptive pain is best treated with simple painkillers (analgesics). If the pain is mild, nonsteroidal, anti-inflammatory drugs, such as asprin, acetaminophen (Tylenol),[/B] ibuprofen …. may be all that is needed. More severe pain can be treated with oral narcotics such as codeine, meperidine, exycodone, or hydrocodone.

[I][B]Page 155 – Chapter 8[/B][/I]

[B]Pain[/B]

Pain is an underappreciated symptom that may persist for many years after GBS. It may be anuropathic pain or the pain that results from the overuse of incompletely recovered muscles. …..

….However, the nerve fibers that transmit these messages (pain messages) in a normal situation may be damaged in any neuropathic disease, including GBS, resulting in enuropathic pain. ……….The message that the damaged nerve fibers send to the brain is really an illusion, although the pain is certainly real. Neuropathic pain usually emerges as the other manifestations of the acute attack of GBS is subsiding.

[B][I]Page 156/7 Treatment of Neuropathic Pain[/I][/B]

Treatment of neuropathic pain is a major challenge. Complete relieve is difficult to achieve;usually the best that can be hoped for is to make the pain tolerable. It is important that the patient understand this because expectations are important in defining satisfaction with treatment.

END OF EXERTS FROM BOOK
[/quote]

This is where they go on to describe the pain meds used for neuropathic pain eg. Neurontin (Gabapentin), Lyrica as well as antidepressant drugs and Narcotic drugs for pain.

Matt,

I was wondering how your daughter has been doing? Can you give us an update?

[B]Matt, You wrote:
They want to do an MRI (to check for a tumor in the brain) but my daughter and her husband are opposed to it. They feel ithe double vision is caused by the GBS and dont’ want to go that route. I see no reason not to just be sure.

The past few days have been constant highs and lows for us and the whole thing is wearing on everyone.

Matt[/B]

[FONT=”Comic Sans MS”][SIZE=”2″]May I ask, is it the cost of the test, or fear of the outcome?[/SIZE][/FONT]

[FONT=”Comic Sans MS”][SIZE=”2″]I had an MRI test during the course of my third hospitalization. No one told me how frightening the experience would be, it was hard to remain still because I was in pain and you don’t expect the noise to intensify it.[SIZE=”3″][B][I] Having said that however, I found out later that you can, and in many case should be sedated for this test.[/I][/B][/SIZE]
There were important findings as a result of the test and positive changes in treatment.
Can you speak to her Dr. and perhaps get him/her to at least gently press for an MRI?
Hope she’s doing well,
OldBat[/SIZE][/FONT]

[FONT=”Comic Sans MS”][SIZE=”2″]Matt,
I’m so sorry, I know you’re frustration and fear levels must be very high just now.
I wish she were a child again so you and Mom could just scoop her up and take her straight to Columbia, alas she is not, still there ought to be some way to intervene. Would you Dr. friend from Slaon Kettering be willing to talk with her? Just a thought.
It’s so scary the way they seem to be moving her about and treating only symptoms as they arise, not seeing the whole person/disease. What does the patient’s advocate say about that?
Again, Matt my thoughts and prayers are with you and your family. Keep nudging!
V [/SIZE][/FONT]

[FONT=”Comic Sans MS”][SIZE=”3″]Matt,
How is Carolyn doing?
Praying that she is better,
Veronica[/SIZE][/FONT]

Hi Matt,

The ‘bloated’ stomach is quite common, (lack of muscle, no food only iv’s, lack of inactivity etc) mine was so huge that I was unable to see my feet when I first started to stand – I was horrified. I have seen it in may patients who have been paralized for a while. If they have done tests to make sure its nothing else, I would almost say that in and of itself it is probably not much to worry about. If it is not being done, Carolyn should be suctioned continuously through the night and day, and if she is able to, she should be given a suction tube to hold so that she can do it herself. This seems to be common, not only with patients i see, but It was somthing that was done in the 80’s with me too.
Wow, I’m not sure if I’m reading correctly, but do they monitor her constantly? This is imparitive at this stage for her, there shouldnt even be a point when someone from another department is able to save her, stats should be monitored 24/7 – Not sure exactly what seems to be going on. Most patients are moved from ICU, to critical care or respiratory care, or some high care before moving to a general ward, and only then to a rehab facility. Please keep us updated.

[FONT=”Comic Sans MS”][SIZE=”2″]Hello Matt,
Just wondering how Carolyn’s doing.
Hope all is well,
Veronica[/SIZE][/FONT]

[FONT=”Comic Sans MS”][SIZE=”2″]From Matt.

Thanks so much for your concern. Carolyn is in rehab. Still has the trache in but it may be out by the end of the week. She was scheduled to come home on April 4 (I tried to get her out before she went crazy) but the doctors convinced her to stay a little longer. There have been most days that she cries all the time. She hate it there; she wants to come home; she misses her children, etc. It’s become a mantra.

Two days ago her husband called and said he didn’t know what to do. He had never seen her so emotionally disturbed with fits of crying and anguish. He didn’t know what to do. We had been saying over and over that she needed a psychologist or psychiatrist to help her. I told Brendan to ask her doctor and meanwhile I’d try to work on something. I called Kessler Rehab in Chester, NJ, whom a doctor friend had recommended weeks ago but Carolyn and Brendan refused to move her. The admin office found it hard to believe that part of her treatment had not been psychological. They told me to have the doctor call them and they would see what they could do as far as admitting her.

I called Brendan back and he said the doc had scheduled a psychologist and and psychiatrist. I said that i don’t have any faith in this hospital or their doctors and informed him about Kessler. He said he’d call me back. When he did he said he and Carolyn decided she’d come home April 18 as long as she would eat her food (which she hasn’t been doing) and that she was more indepedent with voiding waste. He said she had calmed down and now felt better that there was light at the end of the tunnel.

I’m for whatever makes my daughter happy. But I had tried the “light at the end of the tunnel” and it seemed to work psychologically but only for a couple of days. So, it’s been a day and when I went to see Carolyn yesterday it was the first time in weeks that she hasn’t cried. I can see she is really afraid that any setback will keep her from coming home and I’m worried that if that happens she’ll be worse than before psycologically.

Well, that’s about it. We’re praying tha in the end all will turn out alright.

Matt[/SIZE][/FONT]

Matt,
I am thinking of your family and Kevin and I will pray for all of you tonight. Ultimateley, ones medical issues are their own to decide, but you did ask for recommendations. First, I have a couple of questions that are dependant on my response. Are they contemplating a cidp dx? I ask this because technically, the ivig or pp benefits gbs for a time period only. Enough to halt, not stop the attack of antibody production. If she is getting stronger and has gbs, it is because the attack has sopped and SHE is doing better. Continued ivig would not help gbs (unless there was a persistent attack that took a little longer to halt) If I remember correctly she has already had ivig&pp. That being said, if they suspect cidp, obviously ivig IS the way to go, way less invasive than pp or other drugs. But I would want to be sure it was cidp. Kevin was not as dire as your daughter, so we were aable to do the wait and see approach and re checked ncv/emg to cross reference results. That was our ultimate dx tool to decipher between gbs/cidp. Unless she already had a ncv/emg, you have nothing to compare as a reference point. Just for the future, if she has not had one, next time you guys go to the doc, you might want to have one sched. for a starting point. There are other ways to see if there are additional demylienatons that take place, but one of them is not that popular.
Regarding the headaches & ivig, Kevin gets those each and every month, they are awful, he pukes and is ill for about 36 hours, this was the first month it was not so bad, only 6 hours of sickness. There are many things to alieviate some of the symptoms, the first being slo flo rate and a variety of pre meds. As we get it more, it seems as though the reactions get better for Kevin.
Honestly, just an opinion, based on what you write regarding her symptoms onset (quick and her slow response to ivig) it seems like gbs. Kevin and others on the site usually, and I use that loosely as nothing is usual about this condition, respond quickly to ivig and are not so quickly dibilated as you daughter. So, unless I had some concrete evidence that it was cidp (diagnostic) I probably would hold off on the ivig too. But I would explore ALL avenues of being SURE it was not. Because if it is, she progresses quickly. Good luck to you and I hope I have not over stepped.
Sincerely,
Dawn Kevies mom

Matt,

I just wanted to comment on the depression and crying jags. I had GBS at the age of twenty-nine and had four small children ranging in age from 1-9. So I can appreciate your daughters anxieties and depression. I ached for my kids…to be able to hold them and hug them. I wanted to do all the “mom” stuff” but wasn’t able. I cried for days on end as all I really wanted was to go home. I believe she will get to a point where she begins to feel she is contributing something to their care and as she sees small improvements in her day to day well being, she will perk up.

She needs to not over do it though. I remember one evening insisting to my mother in law that I could bathe the 1 year old and once I got out of my wheelchair and on to the floor, I was toast! I couldn’t do any more and of course couldn’t get back in the chair as I wasn’t strong enough. My MIL was ill with cancer and couldn’t assist me so I spent about 2 hours struggling to get to the living room where a bed had been set up for me but then I couldn’t get into the bed either. My husband finally got home and assisted me, but I never did that again. It cost me a couple days….

Take care and know that the mood swings are normal. My neuro told me that it was part and parcel of the nerves inability to function normally. Keep us posted.

Matt,
I understand your frustrations of not knowing the dx. Did she have a ncv and emg? If you are considering a new doc (probably a great idea) I would bring the old test results with to the testing center so that the new doc can duplicate the same test (same nerves tested and same amplitudes) then you will have a true comparison. There is another test, a nerve biopsy, but it is frowned upon by many who had it, I opted not to get it for Kevin since the other tests were conclusive. The risks of infection and permanent pain at the sight did not seem necessary since the ncv/emg confirmed. But if you do not have conclusive evidence with any other diagnostic tools, it would truly show different periods of demylienations, or relapses if you will.

You stated that she was getting better then worse, has she gotten continually worse since the last treatment? If so, I would probably do another ivig with the old doc until you can get into the new doc. There may be a waiting period for an appointment and a ncv/emg time slot. If it is cidp, you do not want to take a chance of letting more damage occur that might never get better. If it turns out it is gbs, the you errored on the side of caution, better to be proactive with this illness.
If you were to do treatments again, they can be done at home, this is where Kevin gets them once a month. The nurse stays the whole time. If you do decide to do the ivig, and you have any questions about the headaches, you can pm me and I could explain some of the strategies we use now after many awful times. Things are better now, so I would love to spare you the mistakes we made. The helpful suggestions all have come from the kind people on this site, so I would be happy to pass them on. J

Dawn Kevies mom

[FONT=”Comic Sans MS”][SIZE=”2″]Matt
So happy that Carolyn is home and under your watchful eyes.
Hope the IVIG goes well.
Sending prayers your way.
Veronica[/SIZE][/FONT]

[FONT=”Comic Sans MS”][SIZE=”2″]Matt,
I see that it has been more than a month since your last post so likely you will have some answers by now, but am curious to know how many PP treatments she received and why, if they were helping, they were stopped?
Also, stopping steroids abruptly is not good as the body’s adrenal glands will have slowed or completely stopped producing that hormone.
You have been on an horrendous roller coaster ride with this, so many different doctors, in and out of ICU’s and false starts.
I hope things have improved dramatically or even just a bit.
Please let us know.
Best
V[/SIZE][/FONT]

[FONT=”Comic Sans MS”][SIZE=”3″]Matt
How did it go with the new Neurologist?
Hope all’s well.
V[/SIZE][/FONT]

Hello Anonymous, sad post you have published, wish your daughter adn whole your familly its allright, but all those descriptions you have writen its creepy, good bless you!