AnonymousSeptember 8, 2007 at 9:44 am
Well we have made it out of the reg hospital 178 days later he is now at Parkwood in Ontario.My question is does anyone have problems with their joints not wanting to move.He seems to be stiff in the arms fingers elbows etc.Is this a normal thing that with time and a lot of phisio that will loosen up or do you have any tricks to help him get moving.It has been a rough year between surgery for crohns and now gbs but we are trying to stay positive.Does any one know where I could locate some info on the causes of gbs? I know that they have said in the past it is caused by flu shots surgery etc but I am just curious as to how many people were affected by the same type of issue.Have a great day and thanks again for all you help and inspiration
AnonymousSeptember 8, 2007 at 10:11 am
It is good news to see that he is making slow progressing in the right direction. GBS is not caused by those things it can follow those things when the body is compromised by those things. GBS is an autoimmune disease. It is also called acute inflammatory demyelinating polyneuropathy. Yes it does feel like your body is stiff just like another autoimmune disease like Arthritsis.
White blood cells are triggered into damaging the nerve covering or insulation, leading to weakness and abnormal sensations. It is a slow recovery and you can read about that on this site. Everybody is different in this recovery and the amount they recover. Some people are in pain and have to go on medications. Some like myself do not have to take pain medications but for the most part at one time or another I have experienced most of the different kinds of sensations like stiffness, tingling, vibrating and fatigue like the others. It is a nasty illness and healing can not be rushed. To hault the attack on the body a patient is usually given IVIG or Plasma Pheresis to hault the attack on the body. You are seeing the slow recovery of the illness in the reversing phase. Nerves have to heal and muscles and tendons and ligaments have to stretch again. Here is the USA I received Occupation Therapy (OT) and Physical Therapy (PT). OT was for the tiny little areas like the fingers and hands. As those areas got better they just put me in PT, but if I had any problems with my hands or fingers they would put me back into OT and give me exercises to do at those areas that did not work as they should. I am still under the care of a Rehab Doctor and doing PT, 23 months after my onset! Dr Parry has written a good [B]reliable[/B] book on the subject. Some of the printed matter out there is not correct or reliable. Working slowly in water (94 degrees) is good for the stiffness because the water puts resistance on all areas of the body but takes weight off the joints. The bouyancy makes it easier to work out but you should be very careful not to OVER DO IT or that will set you back a few days. He will learn to pace himself as he gets stronger and more aware of his body. Until they the phisio team will keep a good eye on him and only work with him on his level. Believe me it will seem slow to him also. After many years he will still continue to get better. Hope this helps a little! Let us know if you find out anything interesting it is nice to share here!
AnonymousSeptember 8, 2007 at 2:32 pm
Have you sent your name into the Foundation? If you havent then got to the gbs-cidp.org website and ‘register’. They should send you a booklet that discusses or lists the many possible causes of GBS, however for a great many cases the cause is not known. Sometimes the patient has it at just a guess:o . Below is a more comprehensive list from a presentation slide of mine, hope it helps.
[FONT=Times New Roman][FONT=Times New Roman][SIZE=3][B]* 50% of cases are preceded by an infection[/B] [/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3] – Campylobacter jejunienteritis (20%) [/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3] – Diarrhea [/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3] – Flu [/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3] – Sore throat [/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3] – Respiratory infections [/SIZE][/FONT]
[FONT=Times New Roman][SIZE=3] – Chicken pox, etc.[/SIZE][/FONT][FONT=Times New Roman]
[FONT=Times New Roman][B][SIZE=3]* During pregnancy [/SIZE][/B][/FONT]
[FONT=Times New Roman][B][SIZE=3]* Following surgery [/SIZE][/B][/FONT]
[FONT=Times New Roman][B][SIZE=3]* Following exposure to toxins [/SIZE][/B][/FONT]
[FONT=Times New Roman][B][SIZE=3]* After inoculations [/SIZE][/B][/FONT]
[FONT=Times New Roman][B][SIZE=3]* Stress[/SIZE][/B][/FONT]
[/FONT][/FONT][/quote][FONT=Times New Roman][FONT=Times New Roman]
You must be logged in to reply to this topic.