Just Recently Diagnosed with GBS. Scared and not sure what to expect

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1

Hi Everyone,

As I read thru the posts and other online sources regarding GBS I wonder if my story is worthy. It pales in comparison to most. So many people report paralysis and impairment rendering them unable to function normally in their lives.

This is my story:

App. 2 weeks ago I was one week into my weight loss program consisting of dieting and walking. I was up to 5 miles/day and feeling great. I had no recent illnesses and had not gotten the flu shot.

On 10/6/15 I woke in the early AM with mild back pain between shoulder blades. This was unusual for me so I took some Tylenol and was able to go back to sleep,

10/7/15 WED- Went to work and mild back pain continued. With ibuprofen tabs was able to finish the day. Noticed numbness in feet and hands - back pain intensified. Had trouble sleeping that night due to more intense back pain. More pain relievers required to sleep.

10/8/15 THU- Went to work with more severe back pain. Numbness in feet and ankles as well as hands, arms and face. I could feel it in my lips and in my mouth.
Only able to get a few hours sleep that night. Back pain continued to worsen. Co-workers advised I should go to ER. I thought I could beat it so I refrained and tried to tough it out.

10/9/15 FRI- Unable to drive to work, back hurting severely. Made doctors appt. for 10:30 that morning with my GP.
After exam, Doc prescribed a pain reliever and Gabbapentin for relieving shingles nerve pain. He advised I should see a neurologist if numbness persisted for 2 weeks or more.

10/10/15 - 10/11/15 WEEKEND
Numbness in extremities persisted, but did not worsen. Back pain was intense and I pretty much stayed on the couch or in bed all weekend.

10/12/15 MON - Back pain was chronic and continuous in my upper back. Shortness of breath. Loss of equilibrium and same level of numbness in all extremities. No sleep as chronic back pain was unbearable. The pain was level 10 and I cant describe how much I hurt in words. I had been blessed with good health my entire life so this was way off of normal for me and I had no idea what to do. Scared was an understatement.

I endured until 5:00AM until my wife could drive me to the local ER. They gave me a morphine shot and the pain was gone. I thanked God. They ran tests: CT-SCAN, EKG, Bloodwork. Ruled out stroke, heart attack, blood clot and diabetes.
After a few hours I was released. Prescribed Tylenol 3 with Codeine and a muscle relaxer. Referred me to a Neurologist who could see me the following morning.

10/13/15 TUE - After seeing the Neurologist he almost immediately admitted me to Baylor Med Center in McKinney. His initial suspicion was GBS. Upon arrival at the hospital, MRIs of the entire neck and spine and a Lumbar Puncture was performed. After several hours confirmed diagnosis of GBS.

I stayed in the hospital for the next 5 days. I was given Intravenous infusion with immunoglobulin (IVIg) every day. I received dilaudid injections every 2 hours for the back pain. After 2-3 days the back pain level intensity decreased and I was able to get relief taking just hydro-codeine. The numbness and tingling in my hands and feet had not gotten worse or any better during my stay.

I was released this past Sunday afternoon and am now at home. I still have the back pain, though much reduced in intensity. My legs are weak, I have some problems with equilibrium but that seems to have improved. I am walking ok with the use of a cane (just in case). The tingling and numbness is mainly in my feet. My hands and arms are hyper sensitive to hot and cold, as is the inside of my mouth and throat.

I now wonder if the storm has passed. Am I on the mend? Why are my symptoms not as severe as others? Was I just lucky to have only acquired a mild version of the disease?

Is this going to get worse since it has only been a couple weeks?

Thanks for reading my story and any input, thoughts or advice is welcomed.

-Ed

2

Ed, looks like you got lucky if that’s a good statement. I’m in Houston now at 3 months recovery. Rigorous exercises will relieve back pain. It’s a very slow process to get muscles back to normal. I am still using a walker for mobility.

3

Hi Ed! I had a milder case too but never received IVIG. It worked like a bouncing ball for me. Just when my symptoms would improve then the ball would bounce up and I would feel bad again. But it never got as bad as in the beginning. The first month was the worst and then I slowly got better with lots of physical therapy. I worked on strengthening my core slowly by walking in a pool at first, backwards and forwards. Then after a few weeks of increasing my time doing that, I would do the recumbent bike slowly while building up to doing more on the bike. My back finally quit hurting over time (no medications now) and I got my leg strength back. I'm still working on my endurance 16 months later but I'm standing all day at work (part-time), jogging a little, and using small weights. Not where I was initially but grateful to be at this point. I was never paralyzed or used a walker (at one point probably could have) but I did have a cane just in case. I overdid it the other day apparently and am having some numbness in a portion of my foot but it hasn't really stopped me from doing most things. So in my experience you have to take things slowly but not get too down if things reflare. Just keep a watch on it to make sure you don't need additional treatment.

Good luck to you in your recovery!

4

Thanks! That's good to hear. I wish you well also...

Tarhealing said:

Hi Ed! I had a milder case too but never received IVIG. It worked like a bouncing ball for me. Just when my symptoms would improve then the ball would bounce up and I would feel bad again. But it never got as bad as in the beginning. The first month was the worst and then I slowly got better with lots of physical therapy. I worked on strengthening my core slowly by walking in a pool at first, backwards and forwards. Then after a few weeks of increasing my time doing that, I would do the recumbent bike slowly while building up to doing more on the bike. My back finally quit hurting over time (no medications now) and I got my leg strength back. I'm still working on my endurance 16 months later but I'm standing all day at work (part-time), jogging a little, and using small weights. Not where I was initially but grateful to be at this point. I was never paralyzed or used a walker (at one point probably could have) but I did have a cane just in case. I overdid it the other day apparently and am having some numbness in a portion of my foot but it hasn't really stopped me from doing most things. So in my experience you have to take things slowly but not get too down if things reflare. Just keep a watch on it to make sure you don't need additional treatment.

Good luck to you in your recovery!

5

I started physical therapy yesterday. I plan to resume walking and exercising at home with the hope I can get back where I was. I feel lucky after reading about how it could have been, Thanks for your reply and best wishes for your complete recovery.

T6texan said:

Ed, looks like you got lucky if that's a good statement. I'm in Houston now at 3 months recovery. Rigorous exercises will relieve back pain. It's a very slow process to get muscles back to normal. I am still using a walker for mobility.
6

That's great that you started physical therapy so soon. If you have any future balance issues, they can help with that too with exercises. I was able to run at a much slower pace in a 5K road race about 5 months later. I did have a reflare of symptoms following a sinus infection 8 months later but am back to jogging some again. I just really have to cross train more now and take it easy with the training not to overdo things. I did not have any symptoms after a recent sinus infection so I'm hoping that's a good sign.

7

Hi Ed,
My story is similar to yours. I started with nagging pain that felt muscular and gradually worsened over 3 nights. Then I had INTENSE pain for quite some time. At first the docs actually didn’t seem to believe me because the pain typically intensified at night, so I didn’t hardly sleep. Of course the docs would see me in the morning when pain was improving but I was so tired from not sleeping. My pain started out in my back and shoulders, similar to how you describe, it gradually moved to my legs and I had “restless” legs. It took a couple months to really get a medication regimen that worked well for me. I was never paralyzed but did have a lot of trouble walking. I am about 13 months out and still find myself learning how to cope. I will have times that go well, I feel energetic and have little neuropathy pain, other times I have days where I absolutely need a nap and to take extra gabapentin. Based on my experience and the reading I’ve done in the medical literature, your storm has probably passed. Try hard not to overdo it, learn what your limits are and try to respect those limits. Be patient with your recovery, nerves are a complex structure that take a lot of time to heal. I hope you will continue to improve and not be left with chronic pain. If you haven’t already, have your doc check your vitamin d levels; most GBS patients experience low vitamin D.

8

Hi Ed

I also had similar symptoms. I am now about 18 months in this 'journey' and am probably about 95% recovered - I still have power limitations (ie jumping), a slight shake to my fingers and random muscle cramping but compared to where I started, I am pleased with the recovery!.

You are lucky that you were diagnosed quickly. My sever back pain (and calf pain) resulted in many worthless MRI's as well as other worthless procedures to resolve the pain and numbness (I currently live in Hong Kong where this condition is not well known - I had to finally go back to the US for final diagnosis). I started PT as soon as I was able and continuously improved (and still do today). Not sure if you had a sickness prior to the onset? I did (due to raw chicken sickness) - and ever time I get sick I am hyper nervous of getting this again. Last week I visited my neuro muscular doctor who specializes in GBS - he told me that if I didn't relapse after 8 weeks that I would just be very 'unlucky' to get this again (ie they are not linked).

Best of luck on your recovery!!

9

Thanks for responding. I had no illness prior to GBS. Always very healthy which may be a positive factor here.

I am now 4 weeks out. Back pain is gone. Stiffness in the ankles is gone and legs are stronger. My equilibrium is normal again. The strange sensitivity in my arms and inside my mouth has diminished. I'm taking all that as improvement. No longer taking any pain meds or gabapentin. Walking normally just get tired easily. Legs are still weak. My PT is helping.

I'll start taking vitamin D as soon as I can get some. Good luck to you and god bless.

2dogs3catsandthekids said:

Hi Ed,
My story is similar to yours. I started with nagging pain that felt muscular and gradually worsened over 3 nights. Then I had INTENSE pain for quite some time. At first the docs actually didn't seem to believe me because the pain typically intensified at night, so I didn't hardly sleep. Of course the docs would see me in the morning when pain was improving but I was so tired from not sleeping. My pain started out in my back and shoulders, similar to how you describe, it gradually moved to my legs and I had "restless" legs. It took a couple months to really get a medication regimen that worked well for me. I was never paralyzed but did have a lot of trouble walking. I am about 13 months out and still find myself learning how to cope. I will have times that go well, I feel energetic and have little neuropathy pain, other times I have days where I absolutely need a nap and to take extra gabapentin. Based on my experience and the reading I've done in the medical literature, your storm has probably passed. Try hard not to overdo it, learn what your limits are and try to respect those limits. Be patient with your recovery, nerves are a complex structure that take a lot of time to heal. I hope you will continue to improve and not be left with chronic pain. If you haven't already, have your doc check your vitamin d levels; most GBS patients experience low vitamin D.
10

Hi EdKo! Glad you are doing so much better. Endurance is a tough part of it to build back but you seem to be on your way. I find that sometimes sensitivities will reappear even at 17 months out after I have increased my activity like maybe along a portion of my calf or thigh for several weeks but then resolve again. I don't really worry because it doesn't affect my activity and it always disappears. Part of my foot got numb when I tried to increase my running distance too soon but when I backed off it resolved as well. I have learned that I have proceed more gradually when upping activities that I would have done prior to this. As a prior athlete, I was accustomed to rebuilding after time off but rebuilding following GBS is much different. It's the nerves that have difficulty and that's so hard for me to judge. I think I understand muscles better than nerves. And I don't know if the problem is with regenerated nerves or damaged nerves. I just know for me it's all gotten better with time and for that I am extremely grateful because at the time I didn't know how bad it would get and if I would ever be able to regain my normal life again. Good luck to you in your continued recovery!