Me and My Husband fighting out his Medical condition of Thymoma and Myasthenia Gravis disorder
How the diagnosis of Myasthenia gravis happened
Myasthenia gravis, this was the word I heard 4 months back. It all started a year back when my husband started getting this problem of drooping eyelid. In the beginning we thought it must be some stress related issue, so we visited a Ophthalmologist, the Doctor suspected Glaucoma, so we got the Glaucoma test and all the other regular eye test done. The test results were all negative and Doctor mentioned it must be regular stress issue so he gave some medicines. After few days of treatment we noticed there was no difference and rather the drooping which was initially not very frequent had increased.
So we again started with our doctor visits, any eye related issue was ruled out so the next thought was lets visit a Neurologist. He did a few test and the Brain MRI, which was normal so he mentioned that it must be a normal Nerve pressure issue and a problem of Ptosis which was very common and for which he gave his dose of medicines which also included steroids. After almost 2 weeks of treatment the drooping stopped and he was back to normal. We were relieved. My husband completed his month long treatment as suggested by the doctor and things got back to normal.
For around 5 months everything was going fine, there was no issue with the eye. But after that again the same problem started but now it was with another eye. So my husband started with the same medicines that the doctor had prescribed before, but this time I told him no to take the Steroids and only take the other medicines. Steroids suppresses the symptoms which happened in the first time and it does not give a cure. And exactly it happened that way unlike the first time after a month also there was no difference and by this time he noticed that his voice had also become coarse.
During this time, I was having my own Spine problem for which I was taking massage therapies. I was discussing this with my therapist and he mentioned that this possibly can be a problem of Myasthenia Gravis (MG).
I came home and started googling on MG and it came to my understanding that it is an Auto immune disorder, and then as I was reading about it more and more and also watching youtube videos I started getting goosebumps.
What is Myasthenia Gravis?
MG is a neuromuscular disorder that causes weakness in the skeletal muscles. It occurs when communication between nerve cells and muscles becomes impaired. This impairment prevents crucial muscle contractions from occurring, resulting in muscle weakness. It is the most common neuromuscular transmission disorder but still a very rare condition. Around 10 to 15 people will get this from a million. That made me more sad and MG being an auto immune disorder was another big worry for me since auto immune disorders will really bring in a lot of disturbance not only in the health but your overall lifestyle. But I did not want to panic since we had not even done the test and were not sure if he would have it.
The next action
The next action was then again visiting the Neurologist and going in for CT scan and other test. Sadly this time the test results were positive and it was confirmed that he had MG with Thymoma. There is a small non malignant tumor that is developed on the Thymus Gland. The doctor mentioned that it was very small so not to worry much and the surgery can be done to remove the Thymus Gland. We did not want to take in any hasty decisions so we said we will give it some time with the oral medications to which the doctor was ok and he said that we can prolong it for 3 to 4 months. At the same time my back surgery also happened so it was not possible that my husband could also get his done. Also we were little scared with the idea of getting the Thymus Gland removed as it has a role to play in our immunity though not much as we grow older.
What are the effects of MG
People normally have different symptoms and impact for MG. For my husband it is the Thymoma and the other effects are the eye drooping and the coarse voice, but in the last month we noticed that his breathing was also getting impacted and his overall immunity has gone down. He started getting regular cold and cough and being restless almost all the time. It also started impacting his work. So finally we decided to not let much time pass and go in for the surgery. After visiting the Doctor, it is decided that we need to go in for a surgery. It is a complicated surgery but we do not have much of option.
Well the MG surgery is not like the other normal surgery where after the surgery you would start feeling better and within a few days you are up and running. There is a 30:40:30 ratio of recovery, It takes around 3 to 4 months, or 2 to 3 years to recover or sometimes after the surgery there is a possibility that there is no recovery at all since it's an auto immune disorder it is not a 100% cure. So the surgery at this point of time looks like a big gamble to me. He will need to altar his complete lifestyle to prevent any future health issues. MG treatment and recovery varies a lot from person to person.
What did we do to keep up with MG
Since this is an auto immune disorder directly attacking the body's immunity, the first action was to completely alter the diet suited to auto immune disorders. Gluten, Lactose and seed foods was completely off from the diet and a lot of greens were added. Started with supplements that would support MG. A high dose of Vitamin D. An intake of Manganese supplements that supports the Thymus. Good amount of rest and no stress.
Also we have started with Homeopathy treatment which will help build up his immunity in a longer run.
As of now I am just praying the Surgery goes well and there is a quick recovery for him as soon as possible. Though I know I can't haste up on it as it will take it's own sweet time.
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I am also praying for a successful surgery and his Speedy recovery.
Thank you my friend. It's going to be a tough week ahead and also a lot of anxiety building up since we do not have much of clarity as to what eventually will be the end result, but let's hope for the best.
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I am sorry Ma'am for your husband's condition. I hope that he can recover soon.
It is hard to have an autoimmune disease because it is the body's own cells that attacks itself.
Thank you @cryptopie. Yes the autoimmune disorders are difficult to deal with, there is a lot of care that we need to constantly keep taking.
I will pray for your Husband Ma'am @nainaztengra
I can understand how tough it would have been. I will pray for your husband's speedy recovery. Please stay strong and show lots of positivity to your husband as well.
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Thank you Bala for your kind words and support. Yes we are all being positive and hoping for the best outcome.
Let's pray for him to recover well from the surgery. Best regards.
Thank you @joelsegovia
I am sending happy thoughts and much love your way, hope it all goes well. Hugs to you and your husband 💚
Thank you my dear. The surgery was to happen today but it has been postponed to Dec since there are some complications and that needs to be set right first.
wishing a speedy recovery for your husband. prayers and best wishes!!
Thank you @jznsamuel
Hi. I empathize with you on this. I also suffer from inherited neurological disorder, which albeit NOT degenerative, is certainly a monkey on my back since birth. Glad to see you went right for the dietary change after the main options. Personally, I would have done a SERIOUS juice detox/fast immediately upon hearing the diagnosis and second opions -- that is WHILE you "thought it over". I would like to point you over to the EXCELLENT work of Dr Bergman. I'm almost CERTAIN you will find some serious help from his lectures, BOTH on the autoimmune AND the spine issues (he is ultimately a chiropractor). His info has had SIGNIFICANT benefit on my health :
How to Avoid or Heal from Autoimmune Disorders
Thank you for sharing the information @transcript-junky, I will go through it. I am getting all possible information to work in the best possible manner for his good health. I wish you good health and happiness.