Rapid Onset of Symptoms

[lgelb]

Nothing in that report has anything to do with ALS. It does mean that you have a softening/thinning of the spinal cord that needs looking into and that may require surgery. That is a mechanical problem. Your supposition that ALS or MS are "on the table" has no support from this report or anything else you have said. An EMG is used to explore many different conditions, as is a brain MRI.

You're in the wrong place here --fortunately. That said, my best advice is to always get a second opinion on any proposed spine surgery or interventional procedure such as an injection.

 

[BobbyT]

I find myself back here (and i apologize) after a very awful call with my Neuro’s nurse.

After the MRI I posted, I sent it over to them as per my Ortho, because thoracic Neuro surgery is rare and extremely hard to find a specialist for. I spoke to her on Friday and asked “does this explain the laundry list of symptoms I’ve presented” and she said told me flat out “yes”.

Well i did an online consult with a Neuro today that I had to pay for.. I don’t know if she was legitimate, but I found her iClinique and figured it wouldn’t hurt) and they mentioned “Respiratory Onset ALS”..

After looking through my symptoms again.. body wide twitching (legs, arms, chest, back, butt, face), acute loss of smell, extreme back pain, rare spinal compression disorder, tightness of throat, I decided to call my Neuro back.

After explaining my concern to the nurse who called me back, she said “well the injury only explains the leg twitching maybe.. but it could be something more nefarious” and then left it at that.

There is not much out there regarding thoracic onset ALS (spinal) or respiratory.. so I was wondering if there was any education I could look into myself.

Again: I am so sorry I am bothering you guys. But this has been a 6 months spiral to get here.. 3 years of chronic back pain, and then I started noticing everything else last month, and now the MRI. I have a brain MRI tomorrow, cervical and another thoracic on next Tuesday.

I am trying so hard not to chase ALS, and I respect and pray for all of you who have it and have to care for it, but if it’s a possibility, then I want to fight hard for an early diagnosis. I’m getting married in September, I have a baby due in October, and I’m afraid I stumbled upon the cause here

 

[Nikki J]

It doesn’t sound like any respiratory onset that I have heard of - here or elsewhere. It can be ruled out by pulmonary function tests if an actual real life doctor thinks it possible.

It still sounds like long covid more than any mnd I have heard of. No RN at my clinic would offer such a cavalier comment. If they did I expect they would be disciplined and counseled

 

[BobbyT]

I suffer from panic disorder and ptsd, so I definitely have been calling them and my Ortho quite a bit since my MRI. I can tell I’m annoying them due to my concern.. my fiancé told me I may have just worn her down with all of my research. Thank you for your response and the responses of the other PALS AND CALS so far. Im trying my best to stay away from here, but this one through me right back down into the spiral.

I have been taking Zoloft and Klonopin as of late, so that could be contributing so some of the deep breathing/ shortness of breath.

Anyway. I genuinely hope this thread becomes educational in the future for someone. I would have never began seeking help for my symptoms in general if I didn’t find this place. While I haven’t been diagnosed with ALS as of yet and hope not to, I would have never gone to a Neurologist or an Orthopedist, which led to them finding my spinal issue, which left untreated, could have led to an extremely horrible outcome as well.

I pray this disease finds a cure and long term management. For all of you. Sending all the love and positivity.

 

[Clearwater AL]

Bobby, you've had 18 replies, this has gone for two pages.

You're trying your best to stay away from here... try even harder.

Maybe giving your fiancé a break too.

I hope your doctors get you on the path out this spiral.

 

[BobbyT]

I apologize and I understand. There’s just not much on respiratory onset out there, so I figured I would try here to see if I could at least check that box off and speak with my actual Neuro about it.

I’m sorry to offend and annoy. It was my intention

 

[BobbyT]

sorry to be back, but Neuro and Ortho team are concerned with the overall picture.

I was able to capture a video of my tongue fasciculations and get it over to my Neuro. Based on that, the continued bodywide facics, random pains in legs, hands and arms (may be cramping or from weakness), bi lateral hoffmans, and what was found in my back, the Neuro has finally ordered an emg.

Scared to say the least. I just wanted to come back and report, as I know it didn’t sound like onset of ALS, but now it’s progressing and I’m extremely concerned.

To date, I haven’t had any failure, but swallowing is noticeably becoming more difficult and my voice is hoarse and weaker.. I’m not sure what else this all could point to at this point, but I’m feeling pretty hopeless.