10 months in

General General GBS Discussion
1

Hi everyone,

Well a bit about me, I'm married with 2 pre-school children and live in Brisbane, Australia. The toughest thing about Guillain-Barre for me is I feel so alone with it. I know nobody who has had it, and after 10 months I'm now in a new phase of wondering 'is this continued symptoms or something else'.

A brief run down of my story:

One Saturday morning in December 2013 I woke up with terrible back ache, I've never had anything like it. Figuring I just had a strain, I went to a couple of massage appointments and prayed for it to heal. Then the tingling started, first only when I woke up in my legs, then my arms. Then the searing pain in my legs they felt like they were on fire.

My primary physician ordered a battery of blood tests which showed an elevated CK level, so decided there was something wrong with me but he had no idea what. It seems I had a mild case, as I never got paralysed (thankfully) though I did nearly cave and go to the hospital many times. I think being busy with pre-school children kept me going.

But I did undergo a battery of tests for all sorts of things - lupus, Rheumatoid Arthritis, ALS, Parkinsons, MS, Scans looking for Cancers etc. I had an appointment with a Neurologist in February, which was cancelled as she was unwell and rescheduled for April 2014. Finally when I got in front of her I was diagnosed almost immediately, but by this stage the only treatment she could offer me was 'time'.

I am slowly getting better - I feel no different to yesterday but heaps better than 3 months ago. That's how I guage my progress.

Now 10 months on I find I still have difficulty controlling my heart rate, which races under minimal exertion. Also my Blood pressure can drop suddenly (lowest in the doctors was 77/44). My eyesight is not what it was, sometimes I feel dizzy for no reason. I can feel the nerves in my spine branching off through my body. Plus I've lost a heap of muscle mass and feel 'weak'

I guess I'm just looking for anyone out there who can relate. It feels like my whole CNS has been messed up by this. Looking forward to continuing with the whole getting better thing!

Cheers

Nojabold.

2

Hi Nojabold,

I am Jacqui. I feel your pain! Similar to you, i have this terrible, constant pounding heart - this seldom goes away and does not require exertion for it to be there. Apparently these are the nerves in the solar plexus region and they control the heart rythym. I have terrible pain in the sciatica nerves, i.e. down the back of my legs, into my lower legs, feet, and burning arms. My eyesight is also affected. The pain is excruciating at times and I see very little, to almost no improvement and i have had this for 21 months now. I also never had paralysis, TG. i am now left with CIDP (chronic inflammatory demylinating polyneuropathy ) i do not take any medication for this as i feel worse on the drugs than off. Was on Lyrica and Cymbalta, but they just remove one from the world and i cannot deal with that as i was unable to even get off the bed. Weight gain on Lyrica was huge! I take pain killers some times and endure the other times and have been at a homeopath which helps minimally. The left side of my body is far worse than the right. So i can totally empathize with you and understand fully what you are going through. i wish you a speedy recovery and God's richest blessings. I can give you my email add if you want to be in touch with me.

Regards,

Jacqui

3

Hi Nojabold. Please hang in there! I can tell you that it does take patience, patience, patience and lots of time! I was diagnosed with GBS on June 04, 2012, admitted to the hospital and did not return home until October 12, 2012. I was initially treated with IVIG transfusions, once a day for 5 days. My DR. Thought that I needed Plasma Pheresis so I was transferred to another hospital and admitted to ICU. The new neurologist decided that the IVIG was beginning to make a turn around in my condition so I was observed for a few days and very light rehab started. I was the transferred to a Nursing Home/Rehab for mild rehab as my Dr. Said I was not ready for intense rehab. This was a nightmare! Mind you I was mostly paralyzed and back like a baby. Could not feed myself, brush my teeth or hair, lost control of my bodily functions, etc. I had to have someone with me at all times. During this “incarceration”, it was discovered that I had a Fistula from my vagina to my rectum. I had to have surgery for this and was given a permanent Colostomy.Another whole story. It is doable and live able, but also life changing. After about a week, I was sent to another rehab hospital. They were great, but were a short term facility and I still was unable to walk, so was sent to another rehab facility where I stayed for 7 more weeks and finally got up on my feet and began to walk with a walker or roll myself in a wheelchair. It has been 2 years! I am so much better than I was, but may never bee 100% again. Who knows. Some make a complete recovery, some don’t. I had a lot of same symptoms as you. I still get fatigued easily. My blood pressure sometimes fluctuates up and down. Ii continued outpatient rehab for over a year and then did fitness for 4 more months. I should still do that, but got so busy with the daily life and have not been in a while. I am back driving and playing the piano in church again. There is hope and life after GBS, but it may be different and we may always have some residual side effects. I know I do. Wish I could give you a hug! I have only talked to one person in my town that also had GBS. We just need to talk to each other on this site.
Hugs & Blessings
Kay

4


deltarat said:
Hi Nojabold. Please hang in there! I can tell you that it does take patience, patience, patience and lots of time! I was diagnosed with GBS on June 04, 2012, admitted to the hospital and did not return home until October 12, 2012. I was initially treated with IVIG transfusions, once a day for 5 days. My DR. Thought that I needed Plasma Pheresis so I was transferred to another hospital and admitted to ICU. The new neurologist decided that the IVIG was beginning to make a turn around in my condition so I was observed for a few days and very light rehab started. I was the transferred to a Nursing Home/Rehab for mild rehab as my Dr. Said I was not ready for intense rehab. This was a nightmare! Mind you I was mostly paralyzed and back like a baby. Could not feed myself, brush my teeth or hair, lost control of my bodily functions, etc. I had to have someone with me at all times. During this "incarceration", it was discovered that I had a Fistula from my vagina to my rectum. I had to have surgery for this and was given a permanent Colostomy.Another whole story. It is doable and live able, but also life changing. After about a week, I was sent to another rehab hospital. They were great, but were a short term facility and I still was unable to walk, so was sent to another rehab facility where I stayed for 7 more weeks and finally got up on my feet and began to walk with a walker or roll myself in a wheelchair. It has been 2 years! I am so much better than I was, but may never bee 100% again. Who knows. Some make a complete recovery, some don't. I had a lot of same symptoms as you. I still get fatigued easily. My blood pressure sometimes fluctuates up and down. Ii continued outpatient rehab for over a year and then did fitness for 4 more months. I should still do that, but got so busy with the daily life and have not been in a while. I am back driving and playing the piano in church again. There is hope and life after GBS, but it may be different and we may always have some residual side effects. I know I do. Wish I could give you a hug! I have only talked to one person in my town that also had GBS. We just need to talk to each other on this site.
Hugs & Blessings
Kay
5

Hi Nojabold!

You are not alone. I am three months out but had a mild case. I was in the hospital twice and the ER several times but I am hopefully on the mend. I never received treatment other than an anti-inflammatory and a muscle relaxer in the beginning, neither of which really helped too much. Although I haven't had trouble with my heart rate, my vision was affected initially. I had difficulty turning my eyes and my vision was blurry but my actual eye sight was okay. I could not drive for several weeks, but it finally resolved. I find I do need reading glasses at times since this happened but I can see great now. I can also feel the nerves burning in my spine which affects my leg strength and causes my neck to be tight sometimes. I feel weak at times but am working to rebuild my muscle and endurance with PT. I have definitely been thrown off physically by this whole thing but I know some things are getting better. Here's to continued progress!

6

Hi Nojabold! I would also like to be there to give you a big hug, as I know how it feels to be an island, wondering what I had, having to diagnose myself because my primary Dr wouldnt put me in the hospital despite my begging in pain for three days. I did finally get a neurologist to do EMG & Nerve conduction tests which convinced him I would need a lumbar puncture to see if there were high proteins in the CSF spinasl fluids (without the presence of WBC/infection). I am a person who accomplishes things… self driven, and I find the hardest thing about GBS to be no matter what I do, the nerves will just regenerate and rebuild the myelin sheath when it is ready to, just like a person with a stroke I guess, that we only have so many months and the longer out, the healing slows down.
Do u notice your swallowing or hearing are effected? Or you have a super tight belt feeling around your ribs and/ or tummy? Or marble under the ball of your feet? I only know one person in my Las Vegas area who has CIDP (sister & chronic slooooow moving version of GBS, he says is 1/1,000,000 & GBS 1/100,000. He wants me see his amazing Dr who will give me ongoing IVIG (I had 8 bags, in two rounds… 5, then 3, about 15,000+/- each bag as u may know)
Also, I really want to tell you that the IVIG took away my heart palpitations, my PVCs, my bradycardia & tachycardia (slow & fast heart rates) & my irregular BPs. I think its worth it, but insurance is a must unless u r rich! I still dont know if the heart issues I had are from the Guillain-Barre or from my Rheumatic Fever (attacks connectivve tissues knee & heart) one of 5 autoimmunes I learned I had when I went to another chronic illness naturepath expert Dr, he knew, as id studied & learned… autoimmune diseasses run in bunches!!! I Had Hashimoto thyroid, liver & anemia autoimmunes too… plus, what a shock to learn all this and more, that I had lyme, antibodies for cytomegalovirus and Epstein Barre, and several blood and other deficiencies (after my first Dr, an urgent care, & the hospital ER I work at! all said my blood work looked fine & nothing was wrong with me even though my tummy, tongue, all four arms and legs’ tingling had turned to complete numbness). Ive learned the hard way, some Drs are just horrible diagnosticians… I got them all, which is why I got as bad as this. I take Gabapentin for my burning legs/feet hands, and today nurses I work with said Lyrica works well too for neuro pain. If your Dr hasnt done IVIG, I am sorry, because I feel like, what if it does make a difference with you?? It seems worth trying even if a few months went by. Some Drs continue one IVIG every two weeks or month for a while. One of the best Neurologists on the West coast of the United Stated is right down the street from me… Dr Leo Germin, who extends with IVIG sometimes. I wish your Dr could call him here in Henderson, NV and just compare notes for you.
Hang in there. Like me, all we can do is the very best we are able & try to keep our chins up as much as possible!!
From Kathy C

7

Thank you all so much for your replies, you have no idea how much it means to hear from people who understand, and I can relate to everything you’ve said. It’s nice to hear that some of my weird and annoying symptooms are shared by others too. Here’s a full list of what i get currently (in no particular order):

Pins and needles through my heels when I get out of bed each morning
Pain through my calf muscles
Pain and numbness trough forearms and lower hand under pinky fingers
Blurred vision - Tarhealing exactly like you describe
BP changes
Sinus tachycardia (resting heart rate fluctuates between 60 - 130 bpm
Crepitus in my shoulder blades
vertigo
swallowing difficulty (Yes Kathy definitly!), i also have to clear my throat a lot and find i have a lot of mucus
Stiff neck muscles, back muscles
stomach cramps, diarrhea

Kathy I neer had any IVIG. I’ve lost an awful lot of faith in the medical profession. When my heart started racing the doctor tried me on beta blockers, well you can guess what that did to my blood pressure! I came off them after 2 days. I’m so frustrated that I find the doctors treat my symptoms in isolation, and not as a whole. My reckoning is I had no problems before GBS, so it must all be linked. I’m so happy to hear that others have experienced similar as it means I’m not going crazy. I’ve now pretty much given up on doctors and am just playing the wait game, taking each day as it comes and praying that I make it through to night fall each day.

8

My daughter was diagnosed April 23rd did one month hospital and 7 weeks in rehab she moved in with me the first of August and moved out 2 weeks ago to go back to her husband she started walking without her walker and does not bend her knees yet but happy about her progress Has anyone experience that they are easily confused and can not take on tasks such as paper work thinking clearly etc reading is slow. She also is still experiencing leg and knee pain to be sometime very painful at times

Thank God for this sight

Wishing the best to all of you

9

Hey,

I was diagnosed back in Oct 2013. I was completely paralyzed from the waist down. I feel you on the pain sensations. It literally feels like I'm being electrocuted non-stop sometimes or the fire sensation. It's unreal and can be really isolating. I too have hit a "plateau" where there isn't much progress but I'm not getting worse. That's the difficult thing about GBS. It just takes SO LONG for progress, but it does come for most people. The best advice I can give is to make sure you have a good pain management dr and take the (Neurontin/Gabapentin)-which helps immensely with the nerve pain. I hope any of this helps you not feel so alone. I too have 2 children 9 and 11 years old. It's affected my life immensely and luckily my children are AMAZING and loving and caring and do way more than is even remotely expected of them. I'm so lucky to have them. You'll be fine, it just takes time. Feel free to contact me if you ever want to :)

Jessica