MG? Grave's? RLS? Severe Depression?
 

I just found this forum. I have a lot of questions but I also have a of the same issues that this forum presents.
I have been seriously ill since the Spring of 2007. In January 2008, I slipped out of my SUV, hitting every part of my body on the vehicle, the side rails and finally the black ice on my friend's driveway.
I won't bore you with all of the surgeries but my biggest complaint is that for 2 years, I have been having trouble with my eyes.
I was told eye Ptosis by 8 Surgeons. 1 said I had "fatty pads"? I got a 2nd opinion and my Field of Vision tests were really poor. They tested me in the a.m. the following week and they were worse. In fact, if they tape my eyelids and brows, I have perfect vision!
Having this 2nd opinion upset Surgeon 1 and she declined to do surgery. She is one of the best in her field.
I sought out other Physicians. 3 had the skills to work on my upper eyelids and brows as they were so low it was like having shades pulled over your eyes 75%
of the way. I desperately sought out surgery.
One Surgeon would not get pre-authorization, so that meant Credit Card. The Plastic Surgeon said, "Yes, but I would have to miss my son's College Graduation or my Daughter's High School Graduation. Of course, I said, "No."
They failed to tell me he was P/T, Retiring and so I had to find someone else.
I traveled 3 hours to NH. I had my Pre-Op and surgery was a go in 5 days! I was on top of the world! He asked for more blood work but no one told me why and what? He cancelled the surgery. No one would accept my calls or give me a reason. I was devastated. In this time frame of 1 week, my Insurance Co. called me and told me that I was approved for Surgery and they would pay for all of it! How often does that happen?
So I saw my Neurologist that specializes in MS. I had an MG work-up 2X before. He ran MRI's on my Cervical & Brain looking for lesions. Negative.
Now I am being seen for Ocular EMG. I have all of the symptoms of Grave's but the blood test came back negative. I do not have the bulging eyes...I have all the symptoms of MG but that's a negative and I have a feeling this test on my eyes will be a Positive.
They keep pushing me into therapy? I know I have Clinical Depression. I know it's severe but wouldn't you be severe after 2+ years of trying to find a Surgeon to operate? Having Physical & Sexual Abuse in the 1st quarter of my life does not take my intelligence away?
I want Surgery on my eyes...depression counseling and attend the Rehab Gym for strength and stability.
I saw a posting by someone and she mentioned depression and sexual abuse from childhood and they feel this manifests "hypochondria"?
I walk with a cane. I lose my balance. My shins kill me, especially at night. My eyes prevent me from taking in light until halfway through the day and I can only drive for 1-2 hours late in the day.
Why does everything have to come back to Mental Health?
I need a Surgeon who deals with Ptosis of the eyes and brow in New England. IF you have recommendations, that would be most appreciative.
I am having the EMG on my eyes in 2 weeks or sooner. I can accept all of this. I will do the Depression classes but give me back my eyesight as much as possible and let me have some dignity and quality of life?
I know my accident affected my neck and spinal cord. I didn't realize that my neck is strained from positioning it to see. So I wear heated neck wraps and I use a TENS unit.
My Paternal side has Thyroid Issues and Thyroid Cancer. My tests come back normal, yet my weight skyrocketed 100 pounds and I dropped 50.
I am 51. I take 3 anti-depressants and I am on 50,000 units of Vitamin D. It really helps and clinical trials in MS have shown positive effects with Vit. D.
So that's my story.
I want to thank all of you for sharing your personal information. It's really validating. I am trying to do my very best to be the most healthiest Mom I can be but I just need my eyesight.
Boston must have someone that can help me? Our UVM Medical Center seems to be at a loss for Plastic Surgeons as is Upstate NY across the Lake.
I want to travel before the snow hits and more black ice.

Hello and welcome to the NeuroTalk Support Groups.

I'm sorry that I am unsure where to suggest you post apart from the MG forum linked below.
The members there may have some ideas for you regarding the ptosis.

Myasthenia Gravis Forum

Graves Disease is listed in the
Autoimmune Diseases Forum

I'm not clear why you've mentioned RLS from your post, but that would be in the
Movement Disorders Forum

Depression Forum

There are other forums here where you might like to read and post.
If you check the main page that lists all of them, you might find the appropriate ones for your needs.

http://neurotalk.psychcentral.com/index.php

take care there.

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Welcome!
 

Hi and Welcome! :D

I have re-read your post. There's a lot of information there. I am not sure I understand it all.

It appears doctors are unsure of what's going on with you?

You have ptosis; yet wonder why?

You mention a few conditions; have any been diagnosed or suspected by your treating doctors?

As for early trauma causing someone to become a hypochondriac, I feel it's unfair of anyone to make a blanket statement on this. Sometimes, people with histories of traumas have more somatic complaints. However, these are very real conditions, not "made up" at all. (For instance, many doctors tie trauma histories to fibromyalgia, irritable bowel syndrome, chronic headaches, etc. Yet, I know many people with these conditions and no history of trauma.) Yet, even if someone has a history of trauma, the conditions they suffer are very real and they benefit from appropriate medical attention.

Are the surgeons holding off because they are concerned other issues(s) be fully evaluated prior to doing any surgery?

With the tests your neurologist has had done and with an eye EMG pending, I am wondering if the surgeons and neurologist feel there may be a condition more important than the plastic surgery procedure and/or concerned surgery is not the best option at this time?

Since you mention UVM, I have an idea of your general location.
By the way, UVM advertises they do this procedure: https://www.uvmhealth.org/medcenter/...y-Program.aspx

Have you checked with Dartmouth in Lebanon, N.H.?

Have you checked with Massachusetts Eye and Ear in Boston?

You have mentioned you are on three meds for depression. I am very sorry your depression is so challenging; yet glad your doctors are listening and trying to help!

As for UVM doctors stressing the importance of utilizing various approaches to treating depression, this is a standard approach at UVM. It's a part of their Mind-Body Awareness. UVM offers outstanding outpatient programs in various approaches, including CBT, DBT and more. UVM also has a rather successful Mind Body Medicine Clinic, under the direction of Magdalena R. Naylor, M.D., Ph.D., Professor of Psychiatry at the UVM College of Medicine and The University of Vermont Medical Center.
Please see the tabs on the left side of the page to learn more:http://www.uvm.edu/medicine/mbmc/

UVM Medical Center is taking a Mind-body approach, to such a degree, they are making health coaches, nutritionists, social workers available through the Primary Care Practices through their Community Health Team service, at no charge: https://www.uvmhealth.org/medcenter/...alth-Team.aspx If you have your Primary Care through UVM (Formerly FAHC), and may be interested in these services, please ask your Primary Care doctor for a referral to this free program.

I hope some information here helps?

Welcome to Neurotalk! :D

To Our Healing,
DejaVu

I'm from the MG forum and suggest you post there. I've not had the eye issues usually associated with MG, but many there have. You mention that you have had a "MG work-up" twice before. Please include in your post what tests, etc. we're done. FYI, negative bloodwork doesn't necessarily rule out MG! If you do have MG then eye surgery may not be the best answer. Jim

(Give the folks there a few days to respond to your post)