going to NIH/lessons I am learning

[katsusu]

hi,

On September 23, I will be admitted in NIH for a week of testing. This my third time - 2nd follow-up. I am one of the cases that they like to see me every 1 to 1.5 years. I have been put in the catogory of "special" but I think that is their way of saying "weird and abby normal" cases.

I know it is really no fair that this is my 3rd time while many people just want to go in there for the 1 day testing. Remember what makes me lucky enough to go in 3 times is the same body that I have to live with everyday. You do not want to trade places with me. Trust me on that.

A brief history-

I have Parkinson Disease 13 yrs- POTS 4 yrs. they find me interesting because they like to see what will happen to POTS as my PD progresses. As for answers - I have learned alot - but that was from reading so I could understand what the test were about and could have inteligent conversation with the staff. But other wise - I can say that NIH doctors do not know what is going on in me. But the best thing is that even if they do not know why- they do believe me- something that mattered more to me then even answers.

Anyways why I mention it is - I was going to put together a list of a few question that people in here have- and ask them to help us understand. But I want to give the most asked questions that would benifit the most. I am going to do a posting above -for ideas- I will see if i can get answers- I am not sure if they will _i think they will- it will not hurt to ask.

Now- on a few lessons I have learned along the way - remember I have had PD for 13 years. I have had POTS actually for 7ish years but the first 3 years it was my mental problem while the last 4 years after they finally dx it had a name POTS. I just found out that a drug that I took for 7 years - 7 years ago might have caused my heart some damage and might be the root of all my problems with POTS.

OK-now remember I have the symptoms froms POTS,PD, and I have a brains stimulator to control the PD in my brain that I just had the bateries changed and since then I had to turn it off because of side effects- but for some reason -i am better off the stimulator then I was on the DBS (deep brain stimulator). Which I know sounds confusing , but that is where I have learned some lessons - I want to share with you................. symptoms that i thought were PD -now I know could be POTS.

1st lesson- we have to start recording -our symptoms - in detail. We can not just say SOB- or chest pains- because if we do -it will be just used against us instead of for us. Also - the wrong kind of test might be done and that will close a door on us because -hey we tested you and there is nothing there.

I had my heart tested- the test came back normal, so since that one came back normal- my chest pains never mattered again. but now _I find out that the drug I was on could have caused me to have heart valve problem- that was actually documented on one report as a slight regurgation- but when i asked about it - everybody said your heart is fine. After researching, I realized that my SOB and chest pains could be something totally different - then the normal "chest pains and SOB" - I have chest pains that make me feel like I have a super tight dress on- making it painful to breath or making me feel as if I was SOB. but if i was tested - my breathing functions and H2 would be normal- giving the doctor reason not to believe me. But now I know that I am not sob but because my blood might not be circulating as well- I may be having to work harder to get the normal amount of air. So, if they test me - my body will work harder naturally- but only I will know about it - and what kind of pain does it give me - chest pains.

What I am learning is that we have to look at each symptoms individually and as a group as well. First -individually- chest pains, heat intolerance, sob, fatigue ...........ok- i can not handle heat.........why? It makes my HR raise- which takes my HR above what my body can tolerate comforably- it raises my Hr- which makes my heart work harder- then i get nausues - and get SOB - and start having chest pains - which by now i feel awful- i then get somewhat anxious because we do not know why I am like this - i go to the hospital and get more anxious because i just know that they think i am a mental case- and i become one - so on and so on.

At the begining it is hard to sort out the symptoms because it acts like pick up sticks- by moving one stick it effets others in the pile- unless you are very careful and look closely. What I mean- is you might get treatment for chest pains but those pain killers might effect your BP/HR making you light headed- so on ..............

It takes time and help (from places like here) to sort out the symptoms and know how they work-alot of research and finding the pieces - before you can put it together. Then -finding a doctor to work with you- Go in the office - and give him information about POTS- teach them if you have to. EXplain -why you cannot be compared to a normal persons HR?BP. I wear a HR watch so I can learn the HR areas that my body feels the best and worse at- then I know if i do not feel good and my HR is up- that is normal -in an nonnormal way. I know that my body is needing to rest- maybe i over did it that day. This goes with my theroy on the brain fog- I get brain fog the most when my HR goes about 10 points higher in my HR. Has anybody ever checked their HR when they had brain fog- is it higher- are you hot or tired- maybe you are not getting as much air - so you have to work harder whicih even makes it worse. What you r body wants is rest. but having POTS and PD -my body always losses out to my mind that trys to run the show -no matter how much my body is complaining. You may not pay now but later on your mind will have a bad case of brain fog.

I have some more thoughts about this subject. but my mental fog is near me.

i hope i make sense-at least a little

kathleen

[goldicedance]

Kathleen...your message is most impressive and insightful. Good luck on your trip to NIH! I live only a short distance from NIH. If you send me a personal message, perhaps if I am home and not suffering from chemo, I can pay you a visit if you like. Lois

[RaeJae]

Katsusu,

Just curious, How old are you? You have PD and POTS. Ugh!! One is more than enough! I feel for you soooooo much

[katsusu]

43- almost 44-

kat

[Ernie]

Hi,

Congradulation for you invitation at NIH. I am sorry you are so sick. I feel for you.

I know you will have a positive experience.

Keep us posted.

Ernie

[corina]

Hi Kathleen,

glad to hear from you again!

I wasn't able to read everything (which is normal for me these days), but it's very interesting. I'm wondering why my cognitive skills are getting worse. I think it must be the blood circulation, but I'm not sure about it. I try to find out when it happens and under what circumstances.

Hope everything goes well for you at NIH!

Best wishes,

Corina

[Guest Finrussak]

Kat

you make perfect sense !!! and I hope others take your suggestions to heart. I too have multiple probs leading to the POTS/OI stuff, progressively ill for years and in your age range. 48. I can fully empathize!

The only way to make sense of all this is document and explain and hope the sharing of this info adds to the body of knowledge!! Good luck at NIH. I for one am glad you are so "interesting" that they study you which will help others---eventually!! Apparently not many of us are interesting enough or who may not want to go into a blind trial. However I am sorry that you are so challenged!! Prayers are sent to you. Be well.

F.

[MomtoGiuliana]

Kathleen

Glad you are getting the attention and I hope it helps get you some answers. I admire your strength greatly.

I also get that feeling like I have a super tight garment on around my chest. It's not really shortness of breath, but it can be significant enough of a sensation to make me feel a bit panicky, like my breathing is constricted. Then it just goes away--sometimes for months at a time.

Do they think the POTS is b/c of PD or came on separately for you--what do you think? It certainly does get complicated when POTS has to be treated along with another disease. It is complicated enough as you point out to sort out the POTS symptoms.

I'll be thinking of you as you go into NIH on Sept 23.

take care,

Katherine