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Old 08-12-2009, 08:26 AM
djvallejo djvallejo is offline
Junior Member
 
Join Date: Aug 2009
Location: Tampa, FL
Posts: 31
10 yr Member
djvallejo djvallejo is offline
Junior Member
 
Join Date: Aug 2009
Location: Tampa, FL
Posts: 31
10 yr Member
Default MG and Thymoma - all w/i last 6 months

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!
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