Brain Damage?

[scarlet56]

where did you buy the alpha lipoic acid + acetil I cartinine….did you buy it from GMC store I have a lot of brain tingling and stinging??

 

[kms1990]

Brain Damage is hard to prove even with the best of testing. I think some people with CFS probably have brain damage but its a minority. However, what is very likely is neuroinflamation causing poor brain performance or imbalance.

 

[Wishful]

The fact that some of us have had what seemed to be complete, if temporary, remissions shows that ME/CFS isn't permanent damage; it's just a temporary dysfunctional state. Furthermore, it can switch states in a matter of minutes or hours, so it doesn't involve major cellular changes or deficiencies or excesses. It may be just a change of ratio between a couple of proteins, which in turn alter other things. Switch the ratio back to normal (somehow), and everything goes back to normal.

 

[scisolver]

@crypt0cu1t Sounds like low blood to the brain. You should find a dysautonomia specialist. They are often cardiolgists or neurologists. https://www.dinet.org/ has a list. That should be good for a start. There are also some major hospital centers which are probably even better.

I went to a local cardiologist that runs a dysautonomia center. I don't have all those symptoms. He said I had neurally mediated hypotension, but not POTS. I also had purple hands and feet when I was there.

Sometimes when I get up from activity on my back I will lose my hearing for a minute.

 

[sunshine44]

yes!! so much so I am so sorry others are suffering but all the things you describe I just can't do easily and my family is like just sit in a wheelchair (from POTS/lyme) at table for Thanksgiving but I get sooooo overwhelmed with conversation, noise, etc. so easy. I am feeling so upset by it all today and numb. This has been happening hardcore with my brain for nearly 2 years now.

 

[Abha]

I'm not quite sure where to post this but, I have decided to put it here as I have posted on Hypopituitarism/PTHP on this thread in the past. Joanna Lane (MailOnline/May 2014) wrote "Thousands of British patients suffering from chronic pain and fatigue could be misdiagnosed with psychological problems when they unknowingly have a type of brain damage.The major cause of the damage is head injury, which can be relatively mild. However, viruses and tumours can even be a trigger."

The symptoms of PTHP – which also include fatigue,depression, obesity, high blood pressure, loss of libido and even infertility – could take years to emerge. That article in 2014,mentioned how up to 30,000 patients were being misdiagnosed with ME/CFS when in fact they had brain injuries(hypopituitarism/PTHP).As in case of long-covid ,these illnesses can overlap and so much more research work is required.

In my own case I have had contact (over a period of time)with an organophosphate(malathion),an assault years ago,enterovirus infection/parasites too and benzodiazepine addiction/withdrawal(horrendous!)....Back in 2014 after a lot of " sabur"(patience)and perseverance, I finally had a diagnosis for Hypopituitarism/PTHP. Fortunately ,this may have given me a few extra years of life but, my crippling illness still continues.

Joanna Lane/family have now set up a Trust in memory of their loving son Christopher who sadly died due to suicide at age of 31yrs.It is believed that he probably had Hypopituitarism that wasn't picked up/treated. This family are now helping others to get a proper diagnosis/treatment if they have had head injuries(even minor ones can cause problems!)Here is the link to their site
www.christopherlanetrust.org.uk
Personal stories re Hypopituiarism/PTHP are available there too.

www.christopherlanetrust.org.uk