Is it GBS?

General General GBS Discussion
1

Hi everyone,

I have been having a slew of health problems recently and was told mild GBS was a potential diagnosis but am still awaiting further testing. In the meantime, I am very stressed and having a hard time managing so I thought maybe this forum could help me better understand if I have GBS or not. I am a 25 year old male.

First, I was diagnosed by my doctor with a sinus infection, although it was probably very slight. She prescribed me Augmentin and I took it for 5 days and immediately started feeling bad on it. After I quit taking it, I noticed some tingling in my hands and feet at work on Thursday the 11th. The next evening, Friday, my legs started to feel unsteady and heavy when I walked and my hands and arms remained tingly and had perceived weakness. On Monday morning, the 15th, I went to the ER and they believed I had Lyme Disease and prescribed me doxicyclin. I took this for 7 days, but did not feel any better. I remained having perceived weakness primarily in my legs accompanied by muscle tightness, muscle soreness, and very slight, sporadic twitching all over. On the 19th, I saw a neurologist who dismissed my symptoms as not serious as my reflexes were ok (knees were slightly weak, but I was very tense during the test) and I was able to walk normal, it just felt strenuous. My lyme test came back negative and a second western blot also came back negative.

Currently, I continue to have all of my symptoms, including perceived weakness, muscle fatigue, soreness, tightness, and twitching. Symptoms are present all over my body, but concentrated in my legs. When I lay down at night, my whole body will feel as if I had a sunburn and I am having difficulty sleeping because of my worrying. If I go out and walk, my legs gets very sore and tired much quicker than they ever did before. My PCP believes it to be either post-viral syndrome, mild MBS, or the least likely, MS. Others have suggested b12 or vitamin d deficiency. I have an MRI scheduled next week and an appointment with a different neurologist.

Other info:

-Was prescribed zoloft and am less than one week in to taking it. I believe it may be increasing the shakiness of my hands and my stress, as it takes some time to adjust to it.

-Was prescribed ambien to sleep. I'll sleep for about four hours straight, but then have a hard time continuing to sleep once I wake up. I believe I might be twitching or jerking in my sleep which wakes me.

-I tried to go to the gym on the 24th and run and lift weights. The next day, it felt like it really set me back, as I was much more sore and my legs seemed more unsteady.

-Began taking b12, b complex, magnesium, D vitamins.

-Had multiple blood tests. The only abnormal result was a positive ANA for speckled at 1:80. I read this can be a pretty common result.

-Less than 2 years ago, I had shingles.

Any thoughts on whether this could be mild GBS or should I be looking in another direction?

2

This sounds very similar to my situation but I'm a 49 year old female. I had a positive ANA but they said this didn't really determine anything. They think that I have mild GBS after ruling out everything else. I had a Tetanus shot the end of May and was put on 2 antibiotics (Septra and Augmentin) for a cut on the back of my leg from a retractable dog leash. I felt bad too, then had tingling that started in my foot a couple weeks later and the tingling worked its way up my legs and into my arms and hands. I was a marathon runner and pretty quickly lost my leg strength though my reflexes were fine along with EMG tests and I could still walk but it was difficult. I ended up with 6 MRIs over the next 2 months which didn't show a thing. The Lyme test was also negative. The whole thing was so stressful to me too and I could not sleep for awhile but I'm not sure if it was just from stress or this condition. The twitching was incredible likes hundreds of twitches in my legs and sporadic other areas around the clock but especially noticeable at night. Running and weights also set me back.

Three months out, the good news is that I am now in some kind of recovery phase. PT is helping me get my strength back and I am running and lifting a little but being careful not to overtire myself. I still have some back pain with less burning, a little numbness at times and less twitches but sleeping all night and getting my strength back and no more shakiness. My doctor says that time tells a lot but I hate to end up with permanent damage for waiting too long.

You may want to check about Physical Therapy because that has given me part of my life back but you need someone who is good with nerves and understands GBS because even if that's not what you have, that's the way this is manifesting itself and you need help along the way while pursuing a diagnosis. The MRI may clear up things too but don't get too discouraged if it doesn't. Hope you feel better!

3

Tarhealing,

Did you have the burning sensations while laying down at night?

4

Also, how long was it until you reached the peak of your illness? I'm at around 16 or 17 days and I think I currently feel at my weakest. Yesterday I walked for probably less than a mile and became so sweaty and sore I barely made it back to my car. But then after driving home for about 20 minutes, when I got there my legs seemed to have already felt better.

5

I was at my worst at about 5 or 6 weeks. It was summertime and I think the heat made it even worse. I also got a spinal tap and ended up with a spinal tap migraine. My back has hurt ever since but I'm not sure if it would have hurt anyway. My legs are so much better now but still get tired pretty fast. I am doing so much more now but have to watch not to overdo it. I am walking about a mile and a half each day and trying to do some kind of alternating workout (light run, small weights, stationary bike, pool walking). Sometimes my legs are tired when I first wake up but better after I walk around. So strange how quickly my symptoms change. Is it your arms and legs that have mainly been affected?

6

Mostly my legs. My arms seemed weak for a couple days at most. My hands get stiff on and off, but I noticed this prior to getting sick, probably from working in an office and typing so much. I think my neck muscles have also been affected as I constantly have the feeling of a lump in my throat or that my neck muscles are too tight.

I doubt the neurologist is going to order a spinal tap for me considering my condition is not that severe. I don't think I would mind the symptoms so bad if I knew for sure it was GBS. I get worried that it is ALS, as ridiculous as that sounds.


Tarhealing said:

I was at my worst at about 5 or 6 weeks. It was summertime and I think the heat made it even worse. I also got a spinal tap and ended up with a spinal tap migraine. My back has hurt ever since but I'm not sure if it would have hurt anyway. My legs are so much better now but still get tired pretty fast. I am doing so much more now but have to watch not to overdo it. I am walking about a mile and a half each day and trying to do some kind of alternating workout (light run, small weights, stationary bike, pool walking). Sometimes my legs are tired when I first wake up but better after I walk around. So strange how quickly my symptoms change. Is it your arms and legs that have mainly been affected?

7

It was mostly my legs too. I noticed a little stiffness with my fingers when I went back to typing at work but that improved pretty quickly. My neck muscles are very tight and I remember it made my neck feel swollen inside early on but it wasn't really swollen, just felt that way. The spinal tap ruled out MS but didn't help me much otherwise besides showing some inflammation which I already knew I had and still didn't get me treatment. And I ended up in the hospital with a migraine. I have worried about ALS too but I don't think symptoms jump around so much with that.

A lot of my old symptoms are gone, thank goodness. As I get better though, I like feeling more like my old self and I take it harder when things relapse some. My back and neck tighten up now when I get tired so I am working to strengthen my core and break that response with PT. I just fear the unknown with all of this and want to recover so badly. Hope you like your new Neurologist.

8

I also lost about 6 pounds and have been unable to put any weight back on. Does GBS increase the amount of energy that you use? I notice I get hot and sweaty just walking around. I’ve tried to increase my calorie intake, but I seem to just be staying still.

9

They have not ordered an EMG or NCV. The first neurologist I saw was not good and did not even want to send me for an MRI.

10

My new neurologist is a little more reputable, so hopefully he will have seen this before.

As an aside, did anyone notice increased sweating in their hands and feet while experiencing symptoms?

11

Rockthecasbah121, I lost 10 pounds pretty quickly during the worst part of this (down to 112 pounds). I added Boost daily to my diet and it helped me gain back weight. The Boost chocolate pudding was the best. I drank a few of the Boost Plus chocolate drinks. It did not take much of this to gain back what I lost. It's expensive so if you try it, don't buy much but it doesn't take much. At first, I thought my weight loss was from the stress of going through this but there seems to be a relationship between the weight loss and GBS.

12

Thanks Tarhealing. I started the boost on Saturday. It's surprisingly good and has a ton of nutrients, so I may even stay on it once I feel better.

Starting last night and into this morning, both of my calves feel absolutely awful. It's the feeling after you've had a charlie horse, but I never actually had the cramp. Rubbing them is so painful. I tried ice last night and stretching but they don't feel any different. Right now I'm just loading them up with icy hot.


Tarhealing said:

Rockthecasbah121, I lost 10 pounds pretty quickly during the worst part of this (down to 112 pounds). I added Boost daily to my diet and it helped me gain back weight. The Boost chocolate pudding was the best. I drank a few of the Boost Plus chocolate drinks. It did not take much of this to gain back what I lost. It's expensive so if you try it, don't buy much but it doesn't take much. At first, I thought my weight loss was from the stress of going through this but there seems to be a relationship between the weight loss and GBS.

13

Hi, Im almost 50 and ive had the Miller-fisher- variant of GBS for over 10 yrs now. I was one of the ones that is in that 5-15 percent that does not get better. or you get better but only half. I do not know if you have GBS. but ive research this scary syndrome for years, ive seen over 40 neruos and I still don't have one. they really don't know much about it in fact I live in Minnesota and I saw the leading man for GBS and I went to him and told him I have pain with my GBS and he sat there for a total of 7 min and never touched me. never checked my reflexes or anything. he just sat in his chair and told me I must have something else because GBS doesn't cause pain. WRONG. I had a lumbar puncture and they found protein in it and that's how I got diagnosed in Colorado. I do have the miller-fisher variant of GBS and I am going on a very big pain pill because of all the damage from the last ten years. the difference between miller-fisher and regular GBS is it starts in the head and moves down instead of GBS that starts at the feet and goes up. you may get put on a vent. to help breathe. to this day I am a patchwork of numbness tingling and pain. partially lung paralyzed along with part of my stomach, my epiglottis is partially paralyzed also. my spine feels like three times its size and swollen, or that's what it feels like anyway. I cant taste food well since my face and mouth are still somewhat numb. Roosevelt had GBS not polio in fact. Im sorry I cant give you an answer. I so wish I could. but if you have NOT had a lumbar puncture that's what you need for GBS to rule it out.

14

YIKES. this reply was suppose to be for rockthecasbah121. Sorry. I did want to add that boost is great stuff to gain weight back. I went from 120 to 91 pds in a month. it took a little over a month to diagnose my miller-fisher variant of GBS but I did buy ensure plus because it gave me an extra 100 calories more than ensure . I did boost till I found the ensure plus and if you can find someone with a Costco card its much cheaper there.

15
MRI came back normal except for a moderately large retention cyst in the base of the left maxillary sinus and a small 1 cm cyst in the right side as well.

16

Glad the MRI was mostly normal!

17

Me too. I think that rules out MS. I doubt the cyst has anything to do with my current issues though.

Tarhealing said:

Glad the MRI was mostly normal!

18

No lesions is a great thing! Still frustrating I know without a definite diagnosis. Can relate completely!

19

It is really dreadful. No MS does give me some relief. I was able to walk much better today after resting most of yesterday. I walked probably half a mile four separate times today because of parking at work. The walk felt OK, but I sweat so much more than I used to, like it's taking much more energy.


Tarhealing said:

No lesions is a great thing! Still frustrating I know without a definite diagnosis. Can relate completely!

20

I was diagnosed with mild GBS today by a much better neurologist. I did not even have to mention it to him. It was the first thing he said. My arm and wrist reflexes were completely absent today while my knees had improved but we're still less than normal. He said my case presented pretty classically and my bloodwork and MRI ruled out pretty much every other possibility. I will be having an EMG in order to potentially track improvement and support the diagnosis.