Rapid onset neuropathy days/weeks
 

Hey guys,

Been lurking here for a couple of weeks. Never thought I’d create a thread about my health, but life happens fast. I’m a 25 yo male; prior to my health issues, I lifted weights 4-5x a week and ran/played sports 1x a week.

Symptoms started earlier this year, not too sure, but I do recall having a hypersensitive neck/throat earlier this year. That came and went, didn’t bother me much. Here are my symptoms:

Mid-April - Had episode while driving where my hand felt disconnected, felt like it wasn’t totally mine. This went away.
May 7- Noticed tingling on my chin, and then it went numb bilaterally. Noticed nose and neck had reduced/altered sensation as well. The following week, I felt a loss of bowel control kinda like during food poisoning.
May 23 - Left hand same issue, now felt numb and weaker. During this day, numbness and weakness spread to left leg as well. I noticed trouble with balance on that leg.
May 24 - Right calf and right forearm started burning/buzzing? Numbness followed right after. By the next morning, my entire right arm and legs became numb. Walking became slightly more difficult, but I adjusted.
May 25 - Numbness spread to chest, back, and buttocks. Rest of face and neck went numb as well.

I went to the ER, got a full body CT which came back clear. I relaxed a bit, but noticed continued progression. I have lost dexterity in my hands - typing and other fine motor movements feel stiff and off. Also had a brain and full spine MRI that also came back clear. Negative ANAs as well and bloodwork is normal. EMG is in a couple of weeks.

Since then - Pains in legs from strenous activity. Feels like muscle pain. Standing/walking seems to make it worse. Ticklish feelings, slight burning, some nerve pain, but not severe yet (all over).
-Took a couple weeks off work, and improved when I went back home to stay with my parents for a week; sx came back again after I went back to my city and resumed work
- Feelings of bowel incontinence have gone away. However, full body, every inch, is still numb, with certain extremities worse than others.
- Sensation seems to be returning in front and back of neck, and recently, rest of body is starting to feel slightly more sensitive (might be in my head, instead of feeling like a cloth over my skin, it feels kinda like a sunburn w/out the pain)
- My strength seems to be fine throughout all this. I stopped lifting for a month, lost my appetite, and lost a good chunk of weight. I’ve been back in the gym, and I’ve lost very little strength (5-10% overall) and can do most of the reps/sets I used to.

Current supplements:
Vitamin B12, ALA...also started smoking a lot of cigarettes since this began. Also have used adderall on occasion and smoke pot every day.

I’ve read through multiple forums and I’ve yet to find someone with such acute onset that didn’t have GBS. Given the progression, GBS is unlikely. Honestly, I have no idea what to do now. My neuro and family think it’s likely anxiety, but fat chance in my opinion. I’ve had depression/anxiety my whole life, and the worst times didn’t even get close to this bad. Not sure how I’ve kept it together all this time, it’s been rough. I feel like my future was wiped out in an instant.

Has anyone heard of similar stories? I spent all day during my work leave researching forums to see if anyone had anything similar. At this point, I feel like I’m the rarest case ever or 1/billion of cases or something. It’s almost unbelievable, surreal even. I’ve been suggested to visit large research hospitals and I live next to a large university, but I’ve yet to receive a referral there. Any other action items I can take in the meantime?

Thanks guys

Hi Atxlaker

Welcome to NeuroTalk :).

I am sorry to read about your constellation of signs; they must be concerning for you.

My understanding of GBS is that it can be difficult to diagnose.

This information about it might you if you discuss this possibility with your doctors.

Guillain-Barre Syndrome Fact Sheet | National Institute of Neurological Disorders and Stroke

All the best.

Hi - I’m sorry for what you’re going through. We’re in a rare club, I think, but yes - if you read through the hundreds, thousands of posts here you will find others with similar presentations. Mine was burning rather than numbness, but it was full body and fast. I now call it a circus of neuropathic pain and oddities: burning (the worst), tingling, pins and needles, stabbing, cutting. I initially had horrible gastrointestinal issues, but that resolved years ago. My condition was linked to a virus. Yes, it’s surreal, and I wrestled with the “is this anxiety” question myself at first, only because my doctors kept trying to firmly plant it in me. What a double whammy- to go through something so frighteningly horrific and bizarre and then to be told it’s in your mind...stress. I’m an educated, intelligent, highly functional middle aged woman who documented my symptoms and doctor/patient contact. I refused to accept the word idiopathic, though some here clearly have to. In the end, I had a documented, chronic viral illness probably exacerbated by a flu shot. Since, I have developed autoimmune conditions, probably triggered by my initial illness. I’ve used the word probably twice, which is what I have to settle for. The point being, keep searching until you can search no more. Get a second opinion. Best wishes for improvement!

Hey guys, it's been a while. I promised myself that if I ever got better, I would come back and provide an update. It's been about three months since the onset of my symptoms, and I'm finally starting to notice improvement. For the last couple of months, I had been driving myself crazy by researching my symptoms on these forums and other communities.

I recently had an EMG/NCS that came back negative. I couldn't believe it. I was sure I had large fiber damage, and given the severity of my symptoms, it should've been 100% conclusive. During this time, I reached some pretty dark places and considered self-harm. I have taken alot of time off work, and have isolated myself from friends and family. I thought my life was over.

I read on here how most people's neurologists were doubters and would toss anxiety diagnoses like it was candy. My final diagnosis was anxiety, which I refused to accept at first. However, I recently began seeing a therapist, and was diagnosed with OCD. As of now, my best guess is that I had a disassociative episode that was ignited by my cannabis use. I never knew what these psychological conditions were, but knew I had OCD tendencies in the past. At first, I doubted this, however soon after, I noticed marked improvement (typing this for example has become way easier than a month or so ago :)).

At one point, I self-diagnosed myself with the most extreme neuropathies, which resulted in me being in a dark place for a while. Trust me, all my symptoms felt real. Everything. I was never one to worry about my health, so I was sure something was up. I'm not a complainer and rarely ever would deal with medical issues. The symptoms felt absolutely real, even now I still have some strange sensations on my arm. However, I realized that this was an issue with my perception, not my actual senses, which depersonalization and OCD will do. I've had OCD attacks in the past (thought I was homosexual for a year and also had severe insomnia/sleep anxiety). I never thought OCD could manifest itself physically, which shocked me. I was 100% sure my life was over, done with. But in this case, I'm still alive and well.

There wasn't much information online from people who shared my symptoms. I started believing that I was the rarest case ever, or that I had some unknown disease. The lack of information terrified me, and I was so sure that it was something bad (we always assume the worst when posters don't provide updates, etc.) I just wanted to share this in case anyone ever experiences this in the future. There is hope, and be strong. Sometimes the mind and brain can be extremely powerful, and it'll take an inhuman amount of patience to see things through. For now, this is farewell Neurotalk; this is a great community and has helped me through the most difficult situation in my life. Thank you.

Hey Atxlaker,

i know its been a while, but maybe you will read this.

How do you feel today?
My story is actually kind of similar to yours. I also felt a lot of improvement after lots of tests were negative and my anxienty went await a bit. But still now, 4 months after the onset i still feel increasing numbness all over my body. Also my vision has gotten even more blurry than before in the last days. So im not actually sure if this is purely caused by anxiety. Also my anxiety set in after i had the first symptoms. Still i smoked weed just as you (but stopped now since 3 months) and it is possible to get psychosis from it. Yet i never had any problemes going in that direction in my life ever.
Did everything go away for your or do you still feel some of the symptoms?

Regards

Well, to me it does not seem like one of a billion.
Week1: woke up with typical symptoms of cubital tunnel in left arm. Asked my family doctor, she agreed: ring and pinky fingers were tingling and getting partially numb from time to time, I was getting electrical shocks in them when touching areas where the ulnar nerve goes near my left elbow.
Week2: no changes.
Week3: started feeling similar things in right hand, but much lighter than in left.
Week4: started experiencing electrical shocks in left toes, mostly in the second.
Week5: started having burning in feet in arms, heart palpitations and bad sweats during night sleep. My calves (mostly left again) started to be weak.
Week6: had all the above but my arms started to get better.
Week7(now): hands have some tingling from time to time, but are way better. Sweats and burning went away. Legs snd feet do get some tingling and some muscle twitches from time to time, but no burning any more. Left calf is noticeably weaker than right.
I am meeting a neuro in 2 weeks.
I did routine bloodwork a couple of weeks before it all started, thytoid, liver and kidney numbers were normal, sugar was 99, which right on the upper border and I did not eat snything before the test. My tryglicerides were high (165) and good cholesterol was low, while bad one was elevated. I am a little obese. I used to drink a few times per week with total number of drinks about the norm or slightly higher, but not too crazy. A few weeks before it started, I also had a flu shot with that anti H1N1 stuff among the ingredients as this what they expected this year.
That was a pretty rapid onset too, what the heck is it, could the metabolic syndrom or my alcohol consumption be a cause for such a rapid development in all kinds of nerves? Or flu shot?
I was also very very stressed the last several months...
I am now taking b1, b12, E, b-complex, folate, alpha lipoic acid, fish oil, C, and acetyl L carnitine while waiting for my neuro appointment.

Hey Kostukei,

Happy New Year first!

Did you get a diagnosis? Any improvement? Mine still seems two worsen after 12 weeks...


Regards

I am in my 10th week now. My burning came back, it went up to my buttock on my left leg but happens in patches almost anywhere on my body, comes and goes. My left calf is a little better though, not as stiff and weak as it used to be. I do get shooting pains in different parts of my body though. The tingling in my rink and pinky fingers come and go on both hands.
I visited neuro, he did EMG/NCS and checked reflexes. All reflexes were normal. He said also that EMG/NCS does not show any neuropathy in legs at all! In my arms he said it looks like I have a rare case of bilateral cubital tunnel. So now I am waiting for vitamin B12, erythrocite sedimentation rate and Lyme blood tests results and scheduled for brain MRI on Wednesday. Neuro says right now it looks to him that I have two different unrelated nerve conditions - bilateral cubital tunnel and "something else which we do not yet know what". I asked how would and extremely rate bilateral cubital tunnel develop together with a different nerve condition at the same time bhe said he does not know and maybe there was a trigger that affected the whole system and made all nerves susceptible to nerve conditions. To me that is all very weird...
Did you get your diagnosis?

Also just received my blood test results:
Sedimentation rate - normal (2);
Lyme - negative;
B12 - normal (981), I wonder if I raised it within a few weeks while waiting for the appointment by taking the supplement of 5000 mcg daily...
So... waiting for the brain MRI....

No i did not unfortunately. All my test were negative, blood work is all good still. They dont know what it is. Will do some additional nerve testing next week. I can definately feel the numbness but so far all the conduction tests were okay. Results from my skin biopsy will come in 6-8 weeks or something. Since i got no pain at all, i dont think they will show anything anyway. Its just everything slowly going numb but a unknown cause.

Regards