Is deterioration years after treatment normal?

[bulls]

I was diagnosed with paraneoplastic limbic encephalitis about 13 years ago.

I had treatment of  chemo/radio,  and antivirals?  and the symptoms that I had on diagnosis went down, but certainly didn't go away.  Plus about 1 year after treatment finished I started getting neuropathic pain (tingling feeling).

But in the time since diagnosis my health has gone down, particularly within the first ~ 8 years after diagnosis.  

For example, I had enough energy 2 years after diagnosis do be social for about 2 - 3 hours and I could sit up on a chair for 5 - 6 hours - say at a computer.  Now I am almost housebound with little real energy and can't use the computer for more than 30 minutes at a time and only at the end of the day.

As another example, my taste sensation has continued to deteriorate.  It was bad during treatment, but within the past 2 years it is still changing.  2 years ago I could tolerate the taste of certain sweets - now they taste terrible.  5 years ago I could eat certain things that now taste deplorable.

Brain scans tell us that there is only residual scar tissue left - certainly nothing that keeps growing because I had annual MRIs for about 8 years after treatment .....


Can you tell me if it's normal for a long term survivor of a brain injury to have continued deterioration of health after the initial issue was successfully treated?  eg.  4, 6, 8, 10 years etc  after the initial diagnosis?

Sorry this is long-winded but I wanted to give you as much information as possible.

Thanks very much

[bulls]

Dr Chahine

Thanks VERY much for your comment - and I appreciate the predicament you are in in terms of not knowing what type of post-diagnostic treatment I've had etc.

I have been under constant neurological, endocrinological, pain clinic etc consultations.  

My blood is being monitored regularly to check the thyroid, hormonal etc  issues.  GH has been investigated too.  Plus I've had a sleep clinic investigation (nothing found)  pain clinic etc.  I've also had irregular MRI's over the years too.


The neurological damage is the cause of my fatigue and also the change in taste.

But since I had it 13 years ago and it's "gone"/"cured"  is it normal to have some of the neurological symptoms continue to deteriorate?

I hope this extra information is useful .......

Thanks Dr

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Limbic encephalitis can have many causes, including infection, associated with cancer (paraneoplastic), autoimmune, are the main ones. The long-term course of course depends on the underlying cause. In some cases, a malignancy is not initially found, but is later detected. In autoimmune limbic encephalitis, sometimes certain antibodies are present that help make the diagnosis. Your symptoms may also be related to the therapy you received: which specific chemotherapeutic agents (which can, for example, lead to neuropathy which causes tingling and numbness). Fatigue is a non-specific symptom that could have so many causes. It could be related to thyroid disorder (from an autoimmune process, or from radiation, depending on which area of the body the radiation was applied to), to anemia, to unrelated disorders such as sleep apnea. Alterations of taste to my knowledge do not result from limbic encephalitis itself but could result from prior chemotherapy or radiation. Damage to certain brain areas can also lead to depression, which often causes significant fatigue. Vitamin deficiencies, such as vitamin B12 deficiency and others, can also lead to symptoms of fatigue, tingling, and numbness.

As you can see, without more information, I can not provide you with an answer as to whether or not your symptoms are related to your prior diagnosis of limbic encephalitis, are side effects of prior treatment, are caused by the underlying cause of the limbic encephalitis, or entirely unrelated. But discussion of your symptoms with your physicians is recommended so that if there are identifiable reversible causes treatment can be initiated.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.