3BoyMama

Wow!! You guys have been through quite a bit, especially since you haven’t yet received a diagnosis. Did they say why they didn’t feel an emg was necessary? Is it because the lp came back normal?

I’m sorry I can’t answer your questions, but I certainly wanted to let you know that your son and family will be in my thoughts and prayers.

Take care and stay encouraged!!

I’m sorry…I missed the part where you stated they did the emg. 😮

I would say no no no flu shoot and find doc who knows g b s cause we had similar prob in richmond ind and they did two lumbars second one showed gbs high proteen in spinal fliud and mri was normal first time but second time found a mess. so if he goes down hill again please before he does find nero/doc who knows about gbs so your son does,nt go though what I and many others have yes bladder probs man cant say any more about that but I think its gbs mild case like mine but it turned into bad later started healing then 3months later it went other way and stable after 3weeks but here after 3yrs still unable to work or run need wheel chair to go in store cant walk any distance with out help.So please find nero/and doc cause better be safe than sorry thanks and good luck praying for you in indiana jim …

Hi 3boymama, Welcome to The Family. Please find a gbs specialist in your area, you can contact the laison for Denver area through the forum here or maybe ask a few of our members from your area. I’m sure they will answer you-but just in case they don’t see this thread I’ll send them a message for you. In my opinion it does sound like gbs. Bladder problems are normal, I have neurogenic bladder from lack of treatment in the beginning. I also was given the conversion disorder dx, it was wrong! That just shows you that the drs you dealt with have no idea about gbs other than what they were taught in the 15 mins in med school. A normal lp is not unusual either, 5% of gbs patients have a normal lp, I was one also. Just by what he is experiencing it sounds like gbs, a mild case compared to those who were put on a vent, but none the less its still a possibility of being gbs. I also have the sensory involvement form, although mine has gone on to be a chronic version. In my opinion he needs to be seen by a neuromuscular or a neuro experienced in gbs/cidp. As he may still be a candidate for ivig to calm the attack on his nerves so further damage isn’t happening. Keep a diary of his symptoms, abilities, problems, get copies of his med records and tests and do lots of research on your own so you can be the best advocate for him. Rest is the best thing he can be doing right now, support from family and friends will also help in recovery. It really sounds like he had an acute onset of gbs. As for vaccs I wouldn’t, ask your dr if he/she gets it personally-chances are he/she doesn’t take flu vaccs. Feel free to ask as many questions as you have or just vent if you need to, and don’t apologize for lengths of your posts-if it wasn’t important it wouldn’t be long. Keep up the pt, your son is lucky to have such a caring and trained mom!!! Take care.

Hi 3boymama, I am seeing Prof. Dr. Diana Quan at the University of Colorado Hospital in Denver. (303) 315-7221. She is one of the most thorough neurologists I ever encountered. I have a rare variant of CIDP and she was able to identify it very quickly. She requires a referral and records sent to her ahead of time.

Take care

Well for one thing your physiatrist is wrong on his bladder facts! It is a mucle controlled by nerves, it is just as likely to get hit as any other muscle/nerve in the body. I still have a neurogenic bladder, which has been since my first paralysis back in 05, just dx with it in oct08 but have had no major problems in between. I couldn’t feel 1000cc of saline that was pumped into my bladder for the test:eek: I still have residual of 50cc in between not sure what it would be for a young boy either, sorry. If it were my son, I would print out the information from this site, since we have lived through the experience, some of us more then once, we know more then most drs know about gbs/cidp. Ask if its a mild case of gbs or if it might be cidp

Hi.
I responded to your pm you sent me.
Dawn Kevies mom

About the ncv/emg, if there is paralysis as you state, with gbs/cidp, there are typically at least slowed velocities if not total conduction blocks. Was the pertinant nerve for myastanis gravis tested? Is the person doing the ncv/emg a tech or a neuro experienced in administering the test? If he is not 100% recovered and still has difficulty walking thus requiring pt, there would have to be some sort of indication on the report I would think. Is it possible there is a tumor or something pressing on nerves, could it be as simple as an injury from hockey? if gbs is totally r/o, maybe they could try steroids to reduce any inflamation if there was some sort of injury. I think it is a step in the right direction getting the additional mri. Just thinking out loud randomly, could there be a fracture in the cocyx (spelling) from a hockey fall, I have read that injury to this area can cause issues with the bladder??? I should mention that before you would consider steroids if a doc does bring it up, you have to be positive that the dx is not gbs, as some abstracts suggest steroids are counterproductive to gbs. I guess my plan if it were my child would be to do the additional mri, if nothing was indicated, I would probably do Mayo or seek another doc adult or peds (as he is older) and be sure if it is gbs or not. If it is gbs, you have to be prepared to accept that this illnes stands for getting better slowly and it may take a fair amount of time to get back near normal. Being that this has recently happened, it sounds like a fair amount of progress has been made. We are going on 2 years and 3 months and still continue to progress. Good luck, please keep us posted. I really do understand your angst regarding the need for a proper dx. If I ever have a doc give us a dx of conversion disorder again, I truly may go psycho right in front of the doc!! Don’t be shy or quiet, be sure to let the docs know you mean business!!! Best wishes for a healthier New Year.
Dawn Kevies mom

Nancy, keep going for a dx or at least rule out the other possibilities. I am still ruling out myself and its been since 05. As for the “action” in gbsers, I didn’t have action and that was in all 12 of my ncv/emgs. I didn’t have my bladder tested until just this oct, and that was because of severe problems with kidney stones and a mass in the abdomen. I haven’t had to do the caths yet, those are the results I had from my tests. While I was in the hospital the first time with paralysis I had to have a bladder scan after each and every void-that was every 2 to 3 hours per the drs orders-that still makes me mad thinking of all the rest I lost, the scans showed 50 to 150 -so I take 50 as much better and nothing I worry about.
I understand what he feels about night time problems and his life-friends sleep overs etc. My son was a late bedwetter and until this past summer he had those same fears and anger. With him we tried meds and everything else in the world to help him, we finally found that when I got him up 2 times a night then weaned down to 1 time a night he trained his bladder for a certain hour to get up himself. it took 9 years so its not a quick fix by any means. Does you son have a urologist working with him? maybe having his bladder tested would give him a piece of mind-I know it did relieve my mind and has added to my case in a large way. Its not painful or that bad, it does require an hour or so. It might help him realize its not his fault and there is a reason for what is going on. Just my opinion.
I can’t believe a neuro didn’t perform the ncv/emg tests, I have had 12 done about to be 13, and they were all performed by qualified neuros.
I am sooo sorry your son and you all are going through this. I do hope you can get a second opinion by someone who has the knowledge of gbs/cidp.
Don’t go by what others say about the rate of recovery meaning he doesn’t have gbs, the amount of time to recover is irrelavent to the dx. I had an acute onset with a rapid start to recovery, I’m talking about from total paralysis to up and able to walk with assistive device a total of 2 1/2 weeks. I went home from the hospital on the day I had set for myself, able to walk with a cane for very short distances and a wheelchair for long ones. The difference between old normal and new normal are many, I have all types of limits now and relapses galore many because I don’t like limitations:o .
Keeping a journal might help your son see how well he has improved since being in the hospital. It will show him how far he has come in recovery, especially if he has plateaued and there are only small little bigs(thats what we call small improvements only seen when one looks back as compared to visual improvements. I like to use the online journals-it helps because I can’t write with a pen for too long and I like pushing buttons:D . I hope your son can keep a positive attitude long enough to get down this long road of recovery, I know its hard for adults to do I can’t imagine being a young man going through this. Keep up the Great support Mom! Hugs!

Nancy,
I am sorry your son is going through so much at such a young age.
I have GBS and my bladder was affected. I have control now but must take medicine for the bladder. It was embarrassing for me as an adult but a young boy going through puberty and how it makes him feel must be terrible for him. One suggestion may be to let your son have a day or evening get together with his friends.
I hope your son keeps making improvements. With Mom as a caregiver and therapist he is headed in the right direction.

I am so glad to hear your son has been dry the past three nights and making progress in his recovery.
My bladder issues started immediately with GBS but each person can be different in what organs are affected.
Good luck on the neuro visit and try to stay calm for now.

Hi!
TM is the syndrome I was trying to think of that I mentioned in my pm to you. There is another girl on the site whose mom I have contact with and tm is her dx, I will see if I can find her # and hook you guys up if you like. IVIG is used in transvers myelitis, even ms too. From what I try to understand from my readings and to some degree what I personally try to spin so I stay calm too, is that once you have one autoimmune, ie allergies, pyloris keratosis to even the more severe, you are more suseptible to getting another autoimmune issue. Other than cidp and diabetes specifically mentioned as once you have diabetes you get cidp, I have never been able to find specific info that links one to specifically another. I am hoping luck of the draw. My opinion as to the diabetes/cidp link is that diabes has peripheral neuropathy and it might be hard to diferentiate between the two? who knows. It is hard to evolve to this point, I still have trouble with it, but I try not to worry about other things happening, so your comment about remaining calm is great. I wish I learned that earlier on. Sorry I did not get back to you sooner when I mentioned something else that acts like gbs. I am going to try to find the moms name w/ the little girl who has gbs/tm.
Dawn Kevies mom

Hi!
Check your pm, I gave you the name of the person whom I was thinking of. E-mail her and I am sure she will respond, I will try to call her and see if it would be ok with her if I give out her number.
Good luck at the appointment.
Dawn

I am also sorry that you are having a difficult time with getting a dx. If you read many with the symptoms that were out there in plain site also were held up from getting treatment because of hospital staffs that were not well educated with GBS. Many of us were so frustrated that they ran all these tests and they were not showing anything. That is what the insurance companies require is a list of tests that rule out other illnesses. My first dx in the ER was MS but then they kept me over night for observation and I slowly progressed like your Son did and they kept doing tests. I never had the nerve tests but they knew it was effecting the nerves because I had no reflexes. They guess I had a sinus infection that was in that 30 day window before the onset that left my immune system weak and the GBS attack slipped in. Bowel and Bladder problems were only the tip of the iceburg. It was my patient OT and PT people that really helped. I would get your Son into a aquatic rehab program too if your insurance would allow it. It was very good to take the weight off the joints and give many of us a freedom that we could not reach with on land rehab. Actually too easy and it was quickly found that we could over do it in the pool because there was not that much resistance in the water. The pool tempature was a great problem too. The exercise pool at the fitness club was 84 degrees and if I slowed down I got chilled quickly. The rehab pool was a nice comfortable 94 degrees and was a great benefit. The hot tub was out and was not allowed.

On the other hand my friends Son had more of what your Son went thru…quick onset and was very athletic. He was paralized from the waist down and still has fatigue from larger jobs like raking leaves in the yard. His recovery was much quicker than mine and I have not had a change to ask her if his bowel and bladder was effected. My other friends daughter had GBS below her waist and she quickly recovered too. Both of these young people had residuals that did not heal and some that took years to put behind them. Both returned to normal lives to work and go back to school. Another case was a Bride to Be on her rehearshal night colasped. 2 weeks later she was out of the hospital and enjoying her new live with her husband. She was married that night in the hospital in her hospital gown. It was videoed and shown at her wedding the next day to people that come in from all around the country. Then later she had an other wedding so she could wear her wedding dress and get photos.

I still struggle with bowel and bladder problems but live goes on and each month/year I look back in my Journal and see that things are continuing to Get Better Slowly! Sounds like things are also getting somewhat better for your Son too.

Happy New Year to you and your family! You have been a great advocate for your Son and I am sure he will realize how lucky he has been to have to to do some of the jobs that only a Mom can do with some dignity. There is alot to be said about having privacy in your own home for those kind of things. You have done a great job MOM! We can not say enough about all our caregivers!!!

When it comes to exercise we usually tell everyone “listen to your body”. It will let you know if that activitiy it too much for this moment in time. That does not mean give it up permantly it just means give your body time to heal and try it later. Maybe next season or 6 months from now! Everyone is different and you have to listen to your own body. This is how we all evauluate if we are able to advance to the next level or not! Many of us had to wait to return to work. I am not able to return to work because I have both good and bad days and I could not be dependable yet. I struggle that that but you have to accept what your able to do and be glad you have come so far from the onset of the attack no matter what the dx is. If are are not allowed to progress and see some kind of hope then depression can take a toll and you loose friends that just move on because they can not deal with your illness. It happens. Maybe working with the Coach and let him help at first with chores around the team locker room and ring. Keeping up the teams moral might be good for his soul too! He would be with friends and they would learn to understand where he is in the healing process. Even some work half a day….maybe he could play part of a game? Maybe work with the Coach and see what he can do to test him in a practice? Or a private secession. It is better to find out for yourself where you stand in activities than to have someone set your limits. I am sure you get questioned all the time from your patients why they can not walk or run when they need to follow proceedure and learn to walk and then walk faster first. It takes all muscles, tendons and ligaments to be stable. If one muscle is weaker that is when there could be a failure and injury could result. So from working with your Son and maybe making part of his therapy when he is able to go back on the ice would build up the needed muscles in the ankles and hips and back to make him in tip top shape. Have you talked to your Son what he thinks about this? Maybe there is a time where the rink could let you have a private lesson and you could evaluate him. This would be a good time for him to see how strong or weak he still is and then a day later see how he feels to see if that type of activitiy is too much for him right now? Yes, I would let him return to an activity level he can handle! What does the Doctors say? I need to read more about the TM also, I am telling you what I know about living with GBS! Others might have a different view and over the holidays might be a slow time on the message boards. Be patient with yourself too!

Please exccuse my lack of orginization in my reply, I have many thoughts and questions that parallel to yours being that my son just turned 12. Anyway, the fact that NO test gives you any answers does bring confusion to the table. many do not have elevated protein in a spinal or evidence on the ncv/emg. This might also be true since the test and the recovery seemed to be going on at the same time. I guess a virus could be a possibility, but feeling a little icky tight before as you mentioned might not be indicative of the end result. There are rare occurences of people who have cidp that have spontaneous recovery/relapse, without treatment, I have read about that once. Was there an unusual amount of contact at the game preceeding the “injury”? This is a very confusing time, I remember grasping at anything that could explain the symptoms instead of what I suspected. We did cortizole testing, I thought maybe stress, weight, anything. Once we found the right neuro who did the l/p things just moved along.
I guess I am saying if you feel that quitting the sports and activity he loves would crush him, I would exhaust all possibilities and try Mayo or Hopkins if you live near there and mentioned a connection to it. I find the explanation by your current neuro bizzare,(undiscovered not yet known to medicine dx for a spinal injury?) But I personally would not let Kevie do the really physical sports till I had the all clear from someone more experienced. Actually, if it is gbs, hockey may be too much so soon. A hiatus may be in order. I believe that keeping things as normal as possible are at the top of the list. I do everything to keep Kevie happy and normal, even during treatments. I guess once you have the all clear then going back to full sports is in order. Or as I call Kevin, super psycho man mode!! My prayers are with you. Tell your son to stay strong and he will get through this physically and emotionally. Kevie is and your son will too.
Dawn Kevies mom

Nancy, I just have to say this, with tongue in cheek as far as it can go—Can I use her crystal ball too???!!!:p There is NO way she can say this is going to happen again-especially if it is an “injury”. I was very athletic as a young person, I was injured many times, always healed, rehabbed, and continued on with my sports. I lived, breathed and bled sports for most of my life also. That is the biggest thing that I miss in my life now, sports, either playing it myself or with my kids or coaching. The only reason I can think of for her to say that to you is if they are considering this to be gbs and possible cidp-it can come on again and again. As for sports participation-I would go with what your son decides, put all the cards out on the table, good bad etc, and let him think it over and make the call himself. He is at the age where he can help make decisions about his life if he is given the important information that is needed to make an educated decision. He is ultimately the one who will be living his life, either playing sports or not, its not totally his call but mostly his call. Yes you are the parent, and I understand the hard spot you are in, but it could have such a big impact on his life and future, he really should be in on the decision making. That way he can’t totally blame you for ruining his life if he disagrees with your short leash rules etc. If it were my son, I would take it one day at a time, evaluate over and over, have wide open communications between him and you, and let him fly! If it does happen again, it is something that you can deal with, if it never happens again, you and he are that much better off, and he will be living his life. Ok, I need help stepping off my soapbox……:D

Has a neuromuscular dr been involved? For this “injury”? This “injury” still doesn’t answer the bladder involvement issue, or the sensory issue. Acute onset is common, acute recovery without treatment is common in gbs/cidp patients-I’m one of them;) along with sensory, motor and bladder issues.
Hugs and Hopes that your New Year will bring you and your son some much needed Strength, Support and Happiness.

It could be a thousand things and I would not even start to guess; as you have said it has even the Drs. puzzled with all the equipment the have to run tests. Mama, don’t worry about being too long of a post. You gave us alot of good info so we could maybe help, and you needed all the space you used to tell us his problems. I would be just as concerned as you are when it comes to the little ones. I will have y’all in my prayers. I can just feel your pain and worry in this post.
God bless,
Drummer

That is Great news on his recovery! Please keep us updated on his results from upcoming appts. I can just picture him getting back on the ice!!:cool:

wow momma, tell your son we are so excited for him. It always feels good to see our kids back to normal. June 10th is my birthday so I’m sure you’ll get good news.. 😀 Keep us up to date and tell him good luck with hockey, we’ll be cheering for him.