Need good advice

[aerius]

Hi,

 

I have been following this forum for a long time, but never posted anything.

I have health problem and I just hope that someone could give me a good advice, since the most of you seem to be very familiar with the symptoms that I have been experiencing.

 

My story start when I was 24. That was in 1996 (I am 40 now). I know this forum is mostly for kids, but by reading this I found a lot of similarity with me. So, at that age, 16 years ago, almost out of sudden, I got tics, OCD, ADD, anxiety, huge irritability and depression. That all happened in the matter of 1-2 months, without any obvious reason. I had some stressful events at the time, but I had it before that and I never ended up with all of that. Somehow, I have saved emails from that time, and I can see that I complained to my girlfriend at that time that I have huge cold and I have to see a doctor (and I know I usually see doctor only if I MUST). So, my guess would I had a big cold 16 years ago when all of this started.

Since then, I have never been able to recover. I kind of recall having facial tics when I was 7 or 8 years old, but that lasted only a few months and then disappeared until I was 24.

At that time I was living in Europe, and in 2000 I moved to Canada, where I live now. Of course, I went to doctor here and I was able to get those super heavy drugs, and I don't have to explain how much they helped me. Then, I turned to alternative medicine. I did gluten and casein free diet, no luck. I took literally all possible supplements for this kind of issue, again same outcome. I have tried vitamins, minerals, amino acids, some herbs, and really nothing helped me at all.

 

I am now in a place of confusion and pain. I even ended up with many issues in my private life, and I really believe that my behavior is largely influenced by these mental conditions. Expectations are very high today, and it is not really easy to fight all of this and have a normal life. How to explain to someone that you need to spend half of your day fighting all of this, since all of those symptoms became part of me now.

 

So, my point would be, is there a chance that this could be PANDA or something similar to that? I am really not sure how much is all of this possible to happen to adults, but sudden onset of all of my symptoms tells me differently. It even all started after a huge cold.

I hope someone can tell me a bit more about that, and if there is any way to test that.

 

Thanks,

Alex ..

[colleenrn]

I would look for an infection that could have triggered your symptoms. I would test for strep, mycoplasma pneumoniae, and Lyme disease/co-infections.

 

Colleen

[pr40]

In my experience, treatment of PANDAS is trial and error. Abx., steroids, anti-inflammtories, NAC, and so on. If I were in your place, I would try and see if it worked on me. ALso, you may want to contact PANDAS drs. Dr. T may be easiest to reach by phone.

Also, there is that popular case now of auto-immune encephalitis which happened to a person in her 20s.

good luck

[Kathy4Him]

My son's started right after his 19th birthday so I absolutely believe it can occur with young adults. He is 23 now and just beginning treatment. Yes, please find a Dr. who is willing to test you for autoimmune illnesses and try abx, steroids....praying for you. Do not give up!!!!

[Dedee]

There has been intermittent discussion within the PANS community about adult onset PANDAS / PANS. Most of the specialist admit that this does exist although it "usually" occurs during childhood. So I think it is very likely you contracted PANS during that time. The question would only be what triggered it and how can you recover. It's a shame that you have suffered for so many years. I would start with Dr. T or with an LLMD to begin the journey of tracking down the infection. Since you had a "cold", it could easily have been Myco p which can hang around for years. An LLMD would be a great place to start for treating Myco. I wouldn't just accept this without a fight. Make an appointment and at least look into it. Best of luck.

 

Dedee