NeuroTalk Support Groups - View Single Post - MG and Thymoma

erinhermes · 08-13-2009, 02:55 PM

Welcome to our little group!

I had some symptoms for YEARS looking back, but a trip to Belize sent me over the edge. Once we returned home, both Mike and I had fevers of about 104 that NO amt of pain meds would reduce and headaches that were HORRIBLE! THAT is when the dv started.

Shortly thereafter, I started experiencing constant headaches and weakness-to the point that carrying a CUP of tea was too much.

I am married and have a 17 yr old son, so I needed to get better FOR THEM!

Things steadily declined until I had my first real "crisis" - Mestinon was NOT enough for me. I had 2 more episodes of not being able to breathe and finally decided to call my amazing neuro. After that, I was in the ICU for days, just trying to build back up. The first few days were great! I felt like ME again! I was able to talk and have people understand me (b/4 I sounded drunk or stoned all the time), but I think I waited too late, b/c things went waaaay downhill from there - went into d fib, everything started shutting down and was woken up all the time by stupid drs telling me I'd need pacemakers, etc.

I was dx'ed on the 6th of March and had my thymus removed on the 27th of April. I think it was a wonderful decision - esp since my antibody count was @ 600 @ the time.

My dv was not helped by Mestinon - only pred took care of that. I know alot of people have opted not to take it, but for ME it was the only decision that made sense.

MY problems with swallowing got so bad that I was down to almost 100 lbs by the time I was finally admitted - if you feel like you can't swallow, it is time to go in - do not wait! Truly! You may also want to add a thickener to Ensure to make sure you get all of the nutrients you need. They have lots of new flavors, so I bet there are a few that you will really like!

Also, shortness of breath is a real issue. You may want to set up an emergency contact in order to make sure you are SAFE @ all times. just someone you can call and (if you cannot speak) THEY will call the paramedics for you!

I know this is a lot to take in @ once, but it does get better! The first yr is always the hardest! You are going to do great once everything levels off! Truly!

Take care!
Erin

Quote:

Originally Posted by djvallejo

New to this MG family and I really like what I have been reading so I decided to post. I have so many questions and would like feedback but let me tell you my story first.

Starting having double vision about 6 months ago so went to see my Primary. She ordered a Head MRI and all came back negative. Referred to Opthamologist and eyes checked out fine except for clear indication of right gaze double vision. Referred to another Optha (specializing in double vision) and she also indicated the same. Clearly saw the double vision but related it to head injury (I guess b/c I told her I hit my head a couple of months back)

Was not satisfied so went back to primary to discuss options and was referred to a Neurologist. Went to see Neuro (about two months into symptions) and w/i 5 min he said he thought I had MG. He ordered blood tests and told me not to worry could only be ocular.

Tests came back positive and also indications of issues with Thymus. MRI ordered for chest (can't do CT - allergic to dye) MRI came back and showed tumor. I don't want to call it Thymoma yet but I guess that is the terminolgy used for the most part. Advised by Neuro the tumor is the size of a small egg and appears to be ecapsulated. He referred me to a surgeon.

Did my research and vistited a surgeon at about 4 months into this. By the way, symptions have started to worsen. Have left eye issues now, occassional weakness in chewing and it feels like my tongue is swollen. No trouble swallowing. Feel some shortness of breath but not too bad and overall fatigue is very evident.

Talked to surgeon (he is very experienced with Thymectomies) and working out the details by most likely will be having the surgery w/i the next 2 months. He advised tumor size of small egg and looks encapsulated (non-invasive). Still feel concerned about invasive but putting my hope in God and that we found this early enough.

Here are my questions I would like feedback on

1) My condition is worsening and would like to know experiences of others with how fast other symptons started showing up and what order/timing (ex me double vision 1 month, drooping lid around same time. tongue swell 2 months, left eye double vision 3 months, drroping lid same time, chewing issues 3 months, etc, etc)

2) Presciptions vs. Vitamins (or both) I am on Mestinon 3-4 times daily but doesn't see to help with the double vision that much. Hesitant to jump to prednisone b/c concerns with that drug. Going to see Homeopath DR in a few weeks. Want focus on natural remedies vs. stacking on the prescriptions. Any experiences with Vitamins and supplements that have helped with symptions?

3) Surgery - Struggling with moving forward with surgery too fast but don't want to take any chances waiting too long. My surgeon has recommended Sternectomy (incision in down center of chest). I asked about alternative techniques and he recommended this as he has performed all others including arthroscopic. Says this is most full proof technique to get all of the matter out including tumor, thymus and all fatty tissue as well a being able to fully investigate other organs, etc. Opinions?

4) Double Vision - Has anyone has success with prism glasses. Again, my vision is fine (one eye at a time) and do not want to jump on Pred (just yet). This is clearly my worst sympton now and work on computer alot for job. Know about patching but that is frustrating. Would like to know is anyone has had success with prisms?

5) Tongue feels swollen. What is this about? Is this a precursor to swallowing issues? Doesn't impact me much just feels weird. Any feedback?

Tons of more questions but I will stop for now. Glad I found this forum and looking forward to getting feedback. God bless all of you!