Undiagnosed Adult GBS, mild case?
July 21, 2017 at 5:20 pm
I just wanted to run my symptoms by this forum to get some opinions. I know that I cannot get a diagnosis, but my appointment with a neurologist is 6 weeks away and that’s a long time from now.
First, I am a 38-year old male and it all started on June 21st, about a day or two after my adenovirus (respiratory type) infection let up. I experienced fairly intense lower back pain and sciatic nerve pain in both legs that kept me up all night. A day or two later that pain had moved up to a point between my shoulder blades and caused horrible arm nerve pain, analogous to the sciatic nerve pain. On Friday, June 23rd I noticed dysaesthesia in my arms (loss of hot/cold sensation) and numbness and tingling in my feet, not sure which I noticed first, but they were not far apart. Also, I had difficulty emptying my bladder, a general sense of malaise, and lack of appetite.
The symptoms continued to become more pronounced and I had numbness in my hands, nerve pain in my back, legs, and arms, dysaesthesia and/or numbness in my lower abdomen, face, and slight loss of hearing in my left ear, and so I went to the ER on Sunday June 25th. They admitted me to the hospital and did a CT, MRI, and loads of blood work, almost all of which came back normal. The only problems I had were tachycardia, high BP, and slightly low potassium (probably from not eating much for days). While in the hospital I was subjected to the typical basic neurological tests that most doctors know how to conduct. However, I was not displaying paralysis, loss of reflexes, or obvious (to them) weakness in my limbs, so they discounted GBS. They swabbed me to test for the virus I had had, which they confirmed to be adenovirus. The next day they discharged me from the hospital, though I had some difficulty walking and extreme fatigue.
On Thursday June 29th, I followed up with my PCP and got some gabapentin for the pain, which didn’t work very well. Later that day I noticed something odd about my left eyelid and over the next two days or so I developed complete bilateral facial paralysis that lasted about a week. I could not move a single muscle on either side of my face! Even while this was happening the numbness and difficulty urinating seemed to be slowly improving in the lower part of my body, so I wasn’t too concerned.
The week of July 10th, while the facial paralysis had resolved, the nerve pain got serious, and I felt like my feet and to a lesser extent my hands were burning, or thawing out after being very cold. On July 17th I got off gabapentin and on to amitriptaline and got a referral to a neurologist. The amitriptaline started to work after 3 days or so, but I had a relapse of the intense nerve pain last night, July 20th. In all of this I seem to be regaining sensation. Areas that were numb are becoming hyper-sensitive or normal again. A lot of the pain is probably from the nerves healing and the hyper-sensitivity. For now my diagnosis is that I have an ‘ascending post viral syndrome’, but none of my doctors want to call it GBS.
At this point I seem to be on the mend, though I still have some numbness, dysaesthesia, and notice weakness in my arms and legs that keeps me from walking as fast as normal. I know it could have been a lot worse, as miserable as it has been. I still don’t have my appetite back to normal and I’ve lost about 25 lbs over the last 5 weeks between the viral infection and this syndrome. My question is if this sounds like a mild case of GBS? If not, any ideas on what it might be? I cannot seem to find anything that matches my symptoms as well as GBS and most of the nasty options were ruled out by a clean CT & MRI.
July 25, 2017 at 11:54 pm
Sorry you are going through this. You obviously have done a lot of research and have clear descriptions and records of your symptoms. I have CIDP, not GBS, but my understanding of both is that if you have them that early diagnosis and treatment is important. Waiting months and years for a CIDP diagnosis isn’t uncommon, but it seems that GBS is more acute and diagnosed more quickly. (I’m no expert though). Also, I have heard CIDP patients say they believe and infection kicked off their symptoms.
It doesn’t seem you’ve seen a neurologist, even the in the hospital, so it is good that you are trying to see one. Can your PCP get you in sooner? It seems 6 weeks is too long given your symptoms. If your symptoms get worse, you could try the ER again and try to see the neuro on call at the hospital. Have you had an EMG/NCS and/or a lumbar puncture (spinal tap)? Perhaps your primary could order those so you at least have them when you see the neuro. Although the EMG/NCS is somewhat of an art and some neuros want their own.
Where are you located? Is it a big city with a teaching hospital? Perhaps try a bigger teaching hospital that will have neuros serving the ER? Also, this site has a list of “Centers of Excellence” with physicians that have proven an expertise in GBS/CIDP. I haven’t gone to one, but was planning to if I didn’t get a diagnosis.
CIDP affects the peripheral nervous system, which includes autonomic. Sometimes when my symptoms flare, I find myself unable to eat more than an ounce or two at a time. I believe this is called gastroparesis when the stomach isn’t emptying properly. I find buying smoothies with protein and slowly drinking them throughout the day gets more of the calories and nutrition I need and goes in easier than solid food.
While you’re waiting, try to do strengthening and balance exercises if you can. This will help you feel better, avoid atrophy and monitor your symptoms (wow, I could do that yesterday, not today, and vice versa).
Best of luck to you. And hopefully more members respond to you — there are several very knowledgeable members of this group who give great advice. If you want/need more, there are a couple of private facebook groups with thousands of members that are more active than this forum.
July 26, 2017 at 12:28 pm
You have what I have.
But I don’t know what that is yet!
OK I don’t know that we have the same thing, but I’ve read probably hundreds of neuorology posts on different forums and your symptoms are the closest to mine that I have seen. Only thing I never had was facial paralysis. Here’s my thread on Neruotalk witch is an excellent forum:
Or go to neurotalk and search forum for ‘urgency or diagnosis treatment’
I’m 3 months into this. My forum post isn’t up to date because I have seen a Neurologist but I’m waiting to post again until I get some answers. I got the blood tests back and one of the tests for a disabling auto-immune disease came back positive. I was too freaked out to research it or call the Doc about it. Then 4 days later her office calls me and says it was likely a false positive. W-T-F! It’s a really difficult roller-coaster ride trying to deal with this.
Only advice I can give at this point is stay positive because it all could turn out just fine. I got negative 2 weeks ago waiting for my neurology appt. My brain absolutly got stuck in the dark dark loop and I was miserable 24-7 for the worst week I’ve had in the last 10 years or so. Now I’m feeling better even though I have no more information about my illness. I do have another MRI Monday and a visual evoked potential test Monday.
Lets stay in touch: whoever gets some answers first let the other person know.
August 22, 2017 at 10:59 pm
Wow, quite the presentation there. My first instinct is to turn away from the prospect of GBS in your case because paresthesias, yes, but Bell’s palsy and sciatica, ehh not so much.
Also, your neural symptoms in the mid-upper thoracic spine are not indicative of EARLY GBS, which typically presents in the lower extremities first and most prevalently. Concerning etiology, recent infection, check, but there are hundreds of weird opportunistic deals that can follow, not just GBS.
Sorry if this is super inconclusive, but it really does sound like you have something else going on; not surprised GBS was eliminated diagnostically.
Summary of out-loud thinking:
Certainty that it is not GBS – 64%, idea of what it could be – 0%, hopeful usefulness to you = some?? I wish you the best of luck in sussing this out.
September 7, 2017 at 4:09 pm
Just to follow up with everyone, I had an appointment with a neurologist today. I sort of got a diagnosis. He said that it was a post-viral syndrome and the its entirely possible that it was GBS, although a very mild case. He said he has seen it all over the spectrum, from very mild to severe. He said that with the proper testing before the symptoms started to resolve, it would have been possible to confirm GBS. At this point it’s really too late to make a positive diagnosis and any tests for demyelination would be painful and really unnecessary considering how mild my symptoms are on the spectrum.
He said that given the mild nature of my case, no treatment was the right course of action. Had they realized it was really a post-viral syndrome, they might of tried IVIG, etc, but that it was better that I did not get treatment because of the side-effects and potential complications.
Anyway, thanks for the support. My recovery is coming along nicely and I’m no longer in pain, though I still have some numbness in my left big toe and some dysesthesia in my arms and legs. I hope this helps someone else understand what they might be facing.
December 1, 2017 at 2:12 pm
mw17, I don’t if you’re still following your post as its been close to 3 months now, but I wanted to say that I found it very helpful. I had a respiratory virus that lasted 2 weeks, followed by a bad sinus infection that was treated with anti-biotics. About the time the sinus infection was at its worst, I started getting thermal dysesthesia and mild numbness in my legs, feet, arms, and hands. At different times of the day my limbs felt mildly numb and more sensitive to cold and heat. Anything cool felt icy cold, and mildly warm was interpreted as very warm, almost hot. Then after another 5 days passed I began getting severe lower back pain that radiated down both legs. The back and leg pain was a nightly occurence. At that point I went back to my PCP who gave me gabapentin, which didn’t help. I was instructed to come back if symptoms worsened, and sure enough I started getting weakness in both legs, I even fell while descending steps at one point. When I went back, the doctor said it could be GBS or some type of post-viral syndrome. He gave me one dose of prednisone to see if I felt any improvement afterward, but agreed that full treatment with a steroid might not be a good idea. He said the single dose could be useful in determining whether its GBS. That’s where I’m at now, the prednisone did seem to stop the pain last night, though the leg weakness and skin dysesthesia remained about the same. I’m about 2 weeks into this and the dysesthesia seems to be stable. My walking is slow, especially where stairs are concerned, and for now the back and leg pain has abated. Despite my trouble with leg weakness, when the doctor tests my leg strength and reflexes they seem good. I tend to think my muscle strength is there, but the instantaneous muscle reaction needed for navigating steps/stairs is lacking, as you might expect if nerve communication with the brain is slowed down. Whatever this is, it seems much like what mw17 experienced, and like him I feel lucky that my symptoms have been so mild thus far.
August 30, 2021 at 8:13 pm
mw17, 364smiles, I know this is an old post, but I found its really helpful. I had diarrhea about 5 to 6 weeks ago after a trip abroad. Around 4 weeks ago I started feeling a mild pain in the lower back and upper back between the shoulder blades. A couple of days later, I started feeling an unusual fatigue and weakness in both of my legs and shortly after a soreness started in both legs and I started getting a constant twitch in both calves and lower thighs. The twitch was specially noticed or stronger when I sat down or laid down at night. While I was active, the twitching was less constant or unnoticeable. By the next day, the twitch and soreness started in my right arm and then my left arm.
The following day I started feeling a very intense burning-numbness like feeling in the lower back and both legs around the knees and calves and I started feeling certain numbness on my feet and toes. At that point I freaked out and went to see my PCP who said it was probably a side effect of the statins I was taking to treat my cholesterol, so he just suspended treatment and told me to come back in two weeks.
Since the weakness, twitching and soreness did not stop, and got the occasional numbness in the legs and feet, I was really anxious about it and decided to go to Mexico (I live at the border) to see another PCP. He did prescribed Ketorolac and Dexabion injections, which helped with the soreness and weakness after a couple of days, but the twitching was still there. Since there was a slight improvement, I decided to wait to see how the symptoms developed.
After two weeks, the twitching was still there with still a mild soreness and weakness in both legs and arms, so I went to see my US PCP. Since the symptoms were still there, he decided to refer to me to a neurologist for an EMG and NCV, but they gave me an appointment until December 13 (more than 3 months away).
Since the waiting time seemed ridiculous, I was able to get an appointment with a neurologist in Mexico in the next couple of days. He did the EMG and NCV and detected a slight affectation. Considering the symptoms, timeline and results of the tests, he determined it was a mild form of GBS.
Since it had already been 4 weeks since my symptoms started and that they were getting better, he indicated that I was likely in the recovery phase. Therefore, he mentioned that no treatment was necessary and that, unless I had new symptoms or if the existing ones escalated, no further tests were necessary.
It has been 4 days since my visit to the neurologist and symptoms seems to be improving on a slowly but steadily.
Were you able to fully recover? How long did it take in your cases?
September 25, 2021 at 12:04 pm
Thank you for your recommendations, now they are also interested in this topic.
You must be logged in to reply to this topic.