Legitimate Concern

[strizzlow20]

Hello Everyone,

I believe I joined this forum many years ago because I was worried that I had ALS back in 2007. I was blown off by a lot of physicians and I finally had a neuro locally that took me serious in 2008 and did a ton of testing. I thought I had bulbar symptoms for ALS because my tounge would feel heavy, I noticed twitching, and I felt I was slurring. To summarize, I was diagnosed with Myastheni Gravis. Now I would like to explain why I'm here and back again. I was given Mestinon which is the first line of treatment for MG and I didn't take it because I didn't see results. For years I did ok, and stayed fit. I went to the Mayo clinic who initially dismissed the diagnosis because I didn't have a positive single fiber EMG. I only have positive antibodies for it. I'm not suffering from twitching in my calves, feet, hands, and arms, and they're weak. Weaker then they have ever been before. I've seen that sometimes a false positive can occur for MG if you have ALS. I would never question the diagnosis, mainly because of the length of time that I've had symptoms, but since April I've been going downhill. I'm having vision and balance issues as well and from what I understand this isn't common with ALS. Bottom line, I'm really nervous. My mom is a nurse and I'm not going to bring this up to her because I don't want to freak her out, but I'm really having a tough time. When I wake up, I don't feel refreshed. I'm having trouble with writing my name and I feel like I miss the key hole when I try to use my keys. The twitching and weakness have me worried. I'm going to bring it up to my neuro in 2 weeks. MRIs, EPs, and even the EMGs have been negative (which I have read that this would be positive). Blood work is all good with the exception of MG. It;s all crazy but I'm not the same person I was. I'm just concerned and now I'm starting to second guess the MG for the cause of all of my symptoms for all these years. I've been complaining of right foot weakness since 2010 and now my nurse practioner said she noticed a slight positive babinski sign. My reflexes to me are off as well. I seem to jerk (maybe clonus or a reflex issue) as well. If anyone has any advice, I'm open to it.

 

[vickim]

With vision problems have they looked into MS? A lot of it sounds like MS or maybe a MD problem. I am nearly into 7 years of mitochondrial myopathy. I take mestinon and have for a year. It helps, I am not back to normal and never will be but without it I would be a useless puddle on the floor.

There are a lot of mito cells in the eyes, more there than anywhere else in the body.

 

[strizzlow20]

I meant to say i am now suffering from instead of not suffering from.

 

[strizzlow20]

Yeah, I immediately thought MS personally. I woke up one day in April and just felt off balance. I had horrible tinnitus and felt like I was falling to the right. I noticed my vision was slightly distorting. I saw three neuro-opthalmologist who said they couldn't see anything wrong. I have had EPs twice (just some minor slowing on the right but still normal), lumbar puncture, EEGs, sleep study, and I have my third MRI next week. My vision problems are not double or blurred vision. I have monocular distorted vision which usually points to something in the brain, but we can't find anything. Now the right footed weakness has spread to the extremities. I had the EMG back in June so I may ask for a repeat in the future because it's much worse. I tried to do chest and back workouts and my legs felt like they were giving out and I couldn't move my feet very well. I will look into what you're suffering from.

 

[vickim]

I understood what you were saying. You get used to typos on this site as many are using one finger or eye gaze to post messages.

 

[vickim]

The MDA site is good. It was a muscle bio that gave me my answers. All my emg/nvcs just showed neuropathy in my feet. But I suffer with vertigo, fatigue, pain and clinical weakness in neck, shoulders, arms, hips and legs. I hope you get some answers soon.

 

[ottawa girl]

Your neuro appointment is in two weeks. Let him/her diagnose you. In the meanwhile, take a deep breath, try to relax and prepare a short chronological list of your symptoms and bring it with you. Listen to what is being said to you at the consultation. Sometimes it's hard to absorb information when one is stressed - doesn't hurt to have someone go along with you to the appointment.

So - 5 years ago you were hoping for med. school - what did you end up studying?

 

[strizzlow20]

Well i advanced to a Manager position at a major ecommerce company. They paid for my pre recs and i found out that some trouble i got into as a minor could make me ineligible for a position in the medical field. So i stayed in business and now have 15 credits left to get that degree with a 3.7 gpa. Ive also recently got engaged (same girlfriend when i posted) and we are getting married in April. We have a son Diesel, hes an American bulldog that's 4 lol. Ive learned a lot about various medical conditions since 2007 so im still interested but i can't risk getting a degree that i cannot be guaranteed i will be able to use. Its a bit embarrassing.

 

[vickim]

No its not. We all do stupid things in our youth. How do you think, we learn? Obviously this was meant to be and you should be proud. You can still study and learn about the medical field. You can never have too much knowledge.

It sounds to me like you have a nice future ahead of you. Good for you.

 

[Bad Balance]

Start working on the neuro to refer you to the nearest ALS right off if there are still doubts. They sometimes hesitate to do this, but it's your timeline

 

[strizzlow20]

I appreciate the advice, my follow up is actually in just a week. He'll probably refer me back to the Mayo Clinic if need be. I really hope everyone is getting a long okay. I haven't spoke to anyone close to me about my suspicions and I just felt more comfortable coming here first. I miss playing sports and having the ability to work out.

Side Question- Why are eye muscles spared, generally, not always, with ***? That doesn't make sense to me since their structure is similar to the other muscles in our bodies. I read a 22 page medical document last night that acted as a guide for physicians on differentials between *** and MG and some of it did not add up. I think this is why it's called practicing medicine and there can always be variants of different conditions. But I just want some opinions or thoughts on this. My thought is its because distal muscles are generally effected first, but there are also the bulbar conditions which aren't that far from the eye muscles.