- I've been very sick the past two months. I am feeling a little better now. im going to have an EKG on fri and if its good, I'm going to go on a big pain med that im so very scared about. I just don't have a choice anymore. I put it off as long as I could. My spine has several herniated, and torn discs. I did PT, chiro, walked, got a dog, did epidurals till they only lasted a week. I just don't have a choice anymore. I moved from Colorado to MN after my doctor found one of the leading GBS doc in the states is in MN . I went and saw this man and for a total of 6 min. After I said I have the miller-fisher variant of GBS and I have pain. Without even touching me one time, he said " then you don't have GBS. GBS does not cause pain you must have something else". I was devastated. I cried from the minute I left his office all the way home. HE was so wrong. He is still one of the leading speakers of GBS in Minnesota and travels talking about it, which surprises me since I found out he only takes MS patients now. I don't get it. that's one of the big problems that ive had in the past 10 yrs with this syndrome. Finding doctors that know about it. I don't have a neuro to this day, because I haven't found a good one yet. I am a parent of a kid who went through 33 surgeries and I was in nursing, so I do know doctors are not God's and one thing I learned with my son is, you can tell a doc to not come in your room anymore. Or tell them their fired. lol and I have . I have been navigating this by myself and with my pc, and pain clinic. I do feel very much alone in this, and I don't want anyone feeling that way. If you need someone to bounce ideas off, or vent, or cry. I am here and ive had the Miller-Fisher variant of GBS for over ten years. Miller-Fisher just means it started in my head and went down. I will listen, and I could use some friends myself. after moving here to MN I have one friend. I just got a car a year ago so I wasn't able to get out much. I lost most of my friends because of GBS. I cant blame any of them either. I had to cancel over and over because I was throwing up, or burning pain, fire, tingling, numbness, rawness so bad that if I rub my hand down anything other than fleece it sends me to the moon. ive told every doctor I have seen for this that I feel like im inside out. I feel everything inside and am a patchwork quilt outside, of numbness, pain and tingling, I had a back fusion last October 28th that was suppose to get rid of some back pain, unfortunately my surgeon was terrible and found out a lot about her, after the fact. Anyway, I hope if you need a friend you find this.. Take Care everyone.
So sorry you’re having such an awful time Mallory. The doctor was so so wrong when he said there is no pain with GBS! For me it was like the pain you get when a dentist touches a nerve x 10000! This was with every inch of my body. Even morphine only took the very edge off for a short while. When I was I’ll I was living in the Netherlands and I must say the neurologists were absolutely fantastic. I know you are in the States but maybe it would be worth emailing one of these guys. My consultant was called Ron Pieterson and he was based with MCH hospitals in The Hague. I was in ICU under his care for 4.5 months and was also a great support to my husband too. This was in 2007/8 and I’m now living in Houston so I’m not sure if he’s still there. I really hope you find the help you need. Good luck to you. Lin x
Hi Mallory, Im Kathy and if u ever want to talk, im here too. 702-■■■■■■■■. I have GBS classic. Type whole body, horrible pain but my meds take off the edge and after not sleeping for almost 2months with my burning hot lava legs (lol) i gave in to meds also. I have unusual things like a MS Hug and liver involvement… my Drs suck too…toom back to work now in a peds ICU and research daily for kids and families so was self diagnosed when no one did anything in pc, urg care, or my own hosp (!). Call weekends. Or pac time after 4 ( ;
Hi Mallory
My name is Andy and I was diagnosed with Miller Fisher late 2013. I was treated quickly with immunoglobulin and seemed to be more or less ok after resting for a few months . Unfortunately I had a relapse yesterday and am currently in the Acute Medical Unit at the Launceston General Hospital, Tas mania Australia. Back on the Immunoglobulin and life on hold again!
Sorry I’m too far away to give you a hug but please know that you are not alone. Feel free to message me anytime as I’m a good listener. Take care, Andy.
Mallory that doctor has never had to endure what we all have to on a daily bases!! I know exactly what you are going through. I was lucky to have my sister as my mouth piece because a good friend of hers has dealt with GBS with her husband. She would talk to this person daily to ask questions as to what we were dealing with. It took close to 4 weeks before I was diagnosed. In that time period I was sent to a nursing home and was hit with tachycardia on the second day. My sister found the doctors I needed to see and thank GOD they listened. If you need someone to talk to let me know. ■■■■■■■■■■■■■■■■■■■■■■■■■
God Bless and Never give up!!!
Debbie S
Blessings to you - I do recall pain, numb and tingle - but it has gone away. I had GBS 20 years ago. It was a long recovery, I recall. I hope things get better for you. Nebretta
mdolich said:
Your new neurologist is WRONG (in my opinion), GBS does have pain associated with the disease!!! I was in such pain (after I came out of the coma) back in 2003. It was also very painful doing physical therapy in order to regain my ability to walk. Some days I was in such pain that I just wanted to die and get it over with. I don't know why some neuro's (very few) think that people with GBS & CIDP don't have pain, {{{scratching head}}}. After having relapses in November 2005, I was re-diagnosed CIDP in January 2006, and I am still in a lot of pain.
I take 3600mg (1200mg 3x day) of Gabapentin, and 300mg (100mg 3x day) of Lyrica to help control the pain. This only takes the edge off the pain. I also have Lidocaine patches for the burning sensation between my shoulder blades, I also cut them into smaller patches for the tops of my feet. I also get 80g IVIG every three weeks. I have been getting IVIG ever since I was re-diagnosed CIDP in January 2006, and will for the rest of my life according to my neuro.
If there isn't any pain associated with GBS/CIDP then why do they prescribe pain medication?? Why are 99.9% of all GBS/CIDP patients on some type of pain meds?? {{{scratching head again}}}
It's a shame you moved all the way to MN for a neuro, you could have come over to Salt Lake City for a good neuro who has experience with GBS/CIDP. Dr. Mark Bromberg was my neurologist at the University of Utah medical center, until the VA took over all my medical. He is very knowledgeable in neurological disorders/disease's.
Have they done and EMG (electromyogram), or a NVC (nerve conduction velocity) test on you??
Good Luck, "Stay Strong and keep a Positive Attitude""
Oh Andy, im so very sorry you had a relapse. I wish I was there to give you a hug today. I may be far but im here if you need me. how did it come back? I had a double too. but mine was about a year or so my mind is a little foggy I was on so many meds at the time, but I remember watching spiderman 2 or 3 and I felt it go numb around my chest area. stay strong andy, your not alone and im thinking about u today.
Tassiepomme said:
Hi Mallory
My name is Andy and I was diagnosed with Miller Fisher late 2013. I was treated quickly with immunoglobulin and seemed to be more or less ok after resting for a few months . Unfortunately I had a relapse yesterday and am currently in the Acute Medical Unit at the Launceston General Hospital, Tas mania Australia. Back on the Immunoglobulin and life on hold again!
Sorry I'm too far away to give you a hug but please know that you are not alone. Feel free to message me anytime as I'm a good listener. Take care, Andy.
thank you for giving me hope. you are the first one so far that's had it longer than I. On a day that I really needed it, you gave me strength and hope. thank you so much. I found out after a EKG this morning the top part of my heart is enlarged now, makes sense since I have been having a hard time breathing now and then. I just chalked it up to a cold that's hung on for a while. I don't know what this means, the ekg lady told me and shouldn't have but thank GOD she did. thank you again.. Bless you
Nebretta said:
Blessings to you - I do recall pain, numb and tingle - but it has gone away. I had GBS 20 years ago. It was a long recovery, I recall. I hope things get better for you. Nebretta
Yes they have done both of those tests. This morning I had an EKG and if it was good then I could go on this pain med , the top part of my heart is enlarged now I don't know what that means. I just got home from the the appt. I will be reading as soon as im done here. what were your symptoms that got you the CIDP diagnosis? really wish I had gone there , instead of here. stay strong, your not alone. Mallory
mdolich said:
Your new neurologist is WRONG (in my opinion), GBS does have pain associated with the disease!!! I was in such pain (after I came out of the coma) back in 2003. It was also very painful doing physical therapy in order to regain my ability to walk. Some days I was in such pain that I just wanted to die and get it over with. I don't know why some neuro's (very few) think that people with GBS & CIDP don't have pain, {{{scratching head}}}. After having relapses in November 2005, I was re-diagnosed CIDP in January 2006, and I am still in a lot of pain.
I take 3600mg (1200mg 3x day) of Gabapentin, and 300mg (100mg 3x day) of Lyrica to help control the pain. This only takes the edge off the pain. I also have Lidocaine patches for the burning sensation between my shoulder blades, I also cut them into smaller patches for the tops of my feet. I also get 80g IVIG every three weeks. I have been getting IVIG ever since I was re-diagnosed CIDP in January 2006, and will for the rest of my life according to my neuro.
If there isn't any pain associated with GBS/CIDP then why do they prescribe pain medication?? Why are 99.9% of all GBS/CIDP patients on some type of pain meds?? {{{scratching head again}}}
It's a shame you moved all the way to MN for a neuro, you could have come over to Salt Lake City for a good neuro who has experience with GBS/CIDP. Dr. Mark Bromberg was my neurologist at the University of Utah medical center, until the VA took over all my medical. He is very knowledgeable in neurological disorders/disease's.
Have they done and EMG (electromyogram), or a NVC (nerve conduction velocity) test on you??
Good Luck, "Stay Strong and keep a Positive Attitude""
Wow. Our symptoms are SO SIMILAR. When my nerves started regenerating it was UNGODLY PAIN. That was at the end 2013 and now I have to see a pain management dr to even remotely function. My pain has improved but is still there and manageable with the pain meds BUT I'm starting the have liver problems from them. The Gabapentin is a huge deterrent for the pain. My my dr's thought I was "making up" my pain because they said GBS doesn't cause pain. WTF? My pain was so bad at one point I was hallucinating. The term "raw nerve" made sense to me. It felt like I was being electrocuted constantly. I couldn't even have a bed sheet touching me. The good news is, is that it does get better! It's just so hard to fight through that pain. I wish you the best. Keep us updated on your progress. My thoughts and prayers are with you :)
Jessica said:
Wow. Our symptoms are SO SIMILAR. When my nerves started regenerating it was UNGODLY PAIN. That was at the end 2013 and now I have to see a pain management dr to even remotely function. My pain has improved but is still there and manageable with the pain meds BUT I'm starting the have liver problems from them. The Gabapentin is a huge deterrent for the pain. My my dr's thought I was "making up" my pain because they said GBS doesn't cause pain. WTF? My pain was so bad at one point I was hallucinating. The term "raw nerve" made sense to me. It felt like I was being electrocuted constantly. I couldn't even have a bed sheet touching me. The good news is, is that it does get better! It's just so hard to fight through that pain. I wish you the best. Keep us updated on your progress. My thoughts and prayers are with you :)
Hi Jessica,
I also cant believe how similar our symptoms are. Nobody can begin to describe this horrendous pain. How long have you had GBS and when did it start to show signs of improvement? I feel like a will never recover. It is encouraging to hear that this pain is the regeneration of the nerves. I never knew this. I am 2 years down the line and the pain is still unbearable. i try to plod on during the day but the nights are agony. Sitting and reclining are just the worst. I find that movement absorbs the vibration. I agree that the liver does not like pain killers so i go to a homeopath who prescribes natural meds which totally help the liver stay 'healthy'. I also just said to someone today, that it feels like I am plugged into an electric socket and being electrocuted constantly! Amazing you shared the same description. I have this terrible pounding in my diaphragm region which never goes away. This too, is unbearable. Doctors do not understand this excruciating pain we endure and tend to just dismiss it cause they have no idea what to do for us. My condition turned into CIDP (chronic inflamatory demylinating polyneuropathy) I wish you a very speedy recovery, as i do everybody suffering with this inhuman pain. G-d Bless,
Jacqui