Hi Pejay,

A very warm welcome to our forum,

I am sorry to hear of all that you have been going through last year. Have you had any tests for cancer yet? Treatments have advanced so much in recent years, that a diagnosis of cancer is not always the sentence that it used to be. Try to deal with one day at a time and don't look too far ahead. There are different types of treatment for individual cancers and some have more side-effects than others.

Once you know exactly what you are dealing with, you will find it easier to decide upon the way ahead.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine, thank you for your kind words.
No tests for cancer yet, I am still on the road to diagnosis. I have years of experience of taking things one day at a time but it is always good advice.

Somethng else I have had a good deal of experience dealing with is other rare conditions. Back in 2013, I think I was bitten by an infected tick, you seldom see the tick that bites you because the ones that cuase infection tend to be in the nymph stage and are so tiny that they go unoticed. It is only when you start coming down with some strange symptoms that all is not right. It is easy to not thnk too much about flu like symptoms, with me it was all kinds of neurological stuff that followed over the following months. There were even psychiatric events that had me getting myself committed for psychiatric evaluation because I though I was going mad. Iyt is always frustrating when you know there is something wrong and nobody you see has the answers. There were definite physical symptoms so there was no reason to suspect anything like Munchausens syndrome.

In the end I had to do my own research and that is when I came across Lyme disease, everything seemed to fit the profile to suggest that I did indeed have Lyme disease. The unfortuante thing about Lyme disease is that thee are no definitive tests, what is even worse, the two tier tests that are used are flawed because they rely heavily on an immune response, if your immune system is compromised then it would be more than likely that an Elisa test would return a negative.

I am telling everyone this because the conseqeunces of having untreated Lyme disease are far reaching and have a bearing on my situation today.

One of the consequences of not getting treatment early enough is there is the potential to aquire autoimmune disorders, after having Lyme disease for about 5 years ( I had an imunoblot test done in Germany that showed positive ) I aquired a very rare autoimmune blood disorder called Lupus aniticoagulant, this was discovered after I was emergency admitted to hospital with severe abdominal pain, I had a CT scan and they found multiple blood clots in the abdomen ( that is pretty rare ). The Lupus anticoagulant was found when they did extensive blood tests to find out the reason for the clots
Nobody has admitted it except a GP, there is a link with Lupus anticoagulant and Lyme disease. As it turns out the clots were not the reason for the severe abdominal pain, it was not  til a couple of years and a couple of visits to hospital that they found the culprit....Gallstones. I still have a few of them left and I still have the blood clots too but as long as they stay where they are and are quiet, it is alright with me.

The problem with having one autoimmune disorder is , you are more at risk of getting others, that is where Myasthenia gravis enters the fold....I dont think it is  a case of bad luck, more a case of natural progression, I get this idea because I think there is something weird about what can happen to a body when it is infected by the bacterium Borrelia Burgdorferi sensu lato; thats the ones that cause Lyme disease. You see Lupus anticoaguant is supposed to be incurable and you are supposed to have it for life, yoiu either have it or you don't according to the books, however, I have not needed dedicated blood thinners like warfarin for years.I digress, so in 2019 after suffering a year with associated symptoms of MG,  an ancident happens that was supected as a stroke, I get tested  and it comes back positive for ACHR antibodies. What these antibodies do is attach thmselves to the junction where the nerves meet the muscles, Acytylcholine is what is called a nuerotransmitter and it helps the signals from the brain to the muscles, so if the signal is weakened because the junction is blockedm then the muscles are weakened.

In young people the thymus is very important  as part of the immune system but once you have reached adulthood you don't really need a thymus, however, I quote, 'In many adults with myasthenia gravis, the thymus gland remains large. People with the disease typically have clusters of immune cells in their thymus gland and may develop thymomas (tumors of the thymus gland). Thymomas are most often harmless, but they can become cancerous.'  So you can see that I am well acustomed to getting bad news. I knew about a year before it was confirmed that I had Myasthenia gravis, I even wrote to my GP practice telling them of my suspicions and my reason for them.

The good thing that has come out  of the experience is I can have  a more open discussion about my health and the options that are available to me.

My advice to anyone is never be frightened to talk to your frontline practioners, whether they be doctors or nurses, about your concerns.

HI Pejay,

I am sorry to hear of all that you have had to go through. However, if you suspect cancer, you should take your own good advice and discuss this with your GP, before getting it investigated. 

Please keep in touch and let us know what unfolds, We are always here for you.

Kind regards,

Jolamine xx