r/NeurologicalDisorders

I was released from the hospital Thursday after having a swift and severe hemiplegic migraine. Most of my aura has resolved, except I am experiencing persistent numbness in my face and my extremities; all of it is right sided. I was taken via ambulance because of how sudden my symptoms came on and received the full stroke code. The neurosurgeon and attending physician ruled out TIA and stroke. I won’t be able to hear back from my neurologist until Monday. But I am contemplating going back to ER.

Has anyone ever had numbness that won’t go away?
How was it treated? Were you seen by cardiology? Just looking for some guidance.

Hi fellow sufferers.

I just went into hospital. Waited 20 hours to see a doctor, but I was at my Hail Mary point.

The doctor suspected stroke or brain tumour.

I had a CT scan which suggested tumour - enlargement in right side and smoothness. Consultants everywhere and a slight feeling of staff panic.

They ordered an MRI.

Spent the night thinking, ok, this explains it. I don’t want to go out this way. I cried all night.

Then, the next morning, a team of doctors came to see me. The MRI was fine. No tumour. No stroke. YAY.

I talked about my nervousness, anxiety, zero energy and pain. Also mood and wanting to die.

They listened!

I am on a new medication. It’s called pregabalin.

Wow. Just wow. Less pain. Much better mood. I have a feeling of wanting to get back into shape and do stuff.

I have been completely bed ridden for months. My body is still frail and I have to take it easy but my body feels like it’s working again. I still need a walking stick and some low back pain but it feels like my nervous system has settled down.

I was in complete burnout and my nervous system was shot after years of masking autism. This seems to have worked. Fingers crossed I am on the mend.

Has anyone else tried this medication? Did it help?

I am looking to find more information about this diagnosis I received. My neurologist was largely unhelpful as they said I have learned to adapt and overcome issues unassisted until now. I (42M) have a wife, job and three children. I have been struggling lately with finding ways to keep up and I cannot lose my family. I am looking for an online group to discuss this diagnosis and any possible resources that might help me manage. I am in Northern California.

Ive done this before but when I was taking the same medication at both times. Now im on totally different medication. Just any help to make it through the day without having to fo to bed would be really helpful.

Im dizzy, tripping, slurring (which i do sometimes but more today). My wife.and i have 2 kids and I just need advice please. Also my anti depression medication is usually in the mornings I haven't taken that.

I also have ptsd and cptsd so.my brain, although sloggy is going a mile a minute with what could go wrong.

Thanks in advance (also focusing on these letters was really hard)

My doctor and I have exhausted every vitamin test trying to stop the neuropathy in my feet and nothing helps. They still burn after starting 6 months ago. I’ve had about 25 different blood tests and they all came back as in or near the green area in the results. They all show nothing wrong. No diabetes, B12 is good, no kidney problems, etc.

My doctor wants me to have a nerve test at a local neurology clinic. I’m told the test is painful. I already know mine is in the small nerves since I have no problem walking.

I asked what will I gain from the test and he had no answer. I’ve asked others if the information they got helped them and they all said no.

Should I have the test? Did it help you? If so, how. What did you do differently that has helped? Cured?

Tbh I am here to just document and be hopeful that I may walk out of this alive.

please please share any similarities, advice, questions, positivity etc I just don’t know what to do anymore. I’m glad this sub exists so we can all help eachother.

29 F

would like to start with saying that my grandma died of Bulbar onset ALS at 60 years old. (no other ALS in the family that we know of But my symptoms are eerily similar to what she experienced and it’s eating me alive)

timeline of my bulbar symptoms: super fast only 2 months in with a lot of issues. Started with lump in throat feeling that quickly turned into issues with saying words with “S” “SH” “Z” and “TH” sounds. Also bigger words with multiple syllables always get slurred or twisted up. Then began the swallowing hesitation and consistent quick cough after liquids bc it felt like something went down wrong pipe. Feel like I have developed a lisp and have issues speaking that feel like need excess effort or concentration to coordinate my mouth properly. noticed tongue “excitability“ and some minor twitching/movement and when trying to make certain movement or flex it, it quivers a lot. a huge issue now is nasal regurgitation almost every single time I eat or drink ANYTHING. it does not come all the way out of my nose, it just feels like material is high in the back of my throat like right above and I have to snort it down to dislodge it and it will shoot down my throat.

Tests done so far:

modified barium swallow study- result showed mostly normal but bad transient penetration into larynx with thin liquid with NO aspiration.

Five separate general neuro exams that checked for upper and lower motor neuron signs- results have always been normal. a couple of them also checked my tongue and bulbar area. They thought the twitching and quivering was odd, but they did not see ALS-type fasciculations Although agreed that they did not know what could be causing the problems.

Speech Language Pathologist- notes from consult show overall “functional“ but obvious signs of dysphasia and evident left sided tongue weakness compared to the right side. he looked extremely concerned about this and said to bring that up to my neurologist but said that overall at this time it seems a little bit okay. I will be seeing him every other week to monitor. No atrophy noted although I personally feel like there is.

i also have shortness of breath and VERY easily winded. Pulmonary test was normal though, with MILD supine breath strength issue.

I had an EMG already on only the right side extremities that was normal. (the reason why I got this done was because I have had a lot of other weird neuro symptoms for a long time but tests never showed anything. (intermittent issues of sensory, balance, brain fog, severe muscle fatiguability that has caused exercise intolerance and lack of stamina and some weakness among other things)

Myasthenia gravis blood testing ALL normal (even Musk)

Brain and spine MRI with contrast normal

other basic blood tests normal as well.

Esophogram normal

they said they feel that they have exhausted all their options/tests and have now transferred me to neuromuscular specialist, which is super scary..

I have EMG appointment on November 17th for the Bulbar region, phrenic nerves, and the left side extremities.

I pray I am going to be okay

thank you for reading if you have made it this far :)

burning skin sensations on thighs,pelvic,arms,tingling in hands. moves around from thighs to arms and fades in and out. so far blood tests normal. hve mri's coming up. anyone have this

I’m 17 years old and just got diagnosed. I don’t know very much about jme. I have just had mild myochlonic seizures and I was wondering if I will always have just those kind of seizures or how possible it is to get a grand maul? Also I just started keppra and I have noticed a lot of brainfog, forgetfullness and learning problems. Does anyone have experience if it goes away with time?

My baby brother has been on risdiplam for about a month now but the regret we carry very heavily is about Zolgensma. Especially when you come from somewhere like India where only way to get near to the treatment is fundraising and seeing videos of crowdfunding campaigns, it can be heartbreaking. It is literally parents getting on their knees, I don't mean that disrespectfully or anyway judging one's pain, but it sometimes feels like begging from street to street, with hands folded and tears in their eyes, asking every person they come across for help. And if your child is critically ill, their life can almost feel dependent on whether their story reaches an extraordinarily generous rich person. If you look at crowdfunding platforms, this is often what seems to capture people's attention the most. I don't think every parent can campaign like that. Even when you'd do anything for your child, it isn't always possible and admitting that is painful. Our family carries a lot of guilt over this, though we're still trying to find ways but this part's the hardest

If a child is already on risdiplam and later becomes eligible for Zolgensma, could Zolgensma potentially provide additional benefits beyond risdiplam? For example, could it help preserve functions that risdiplam alone might not, even if major motor milestones or walking remain uncertain with either treatment because already lost motor neurons cannot be restored, as our doctor explained?