Most notable change since Rituxan

[Rebecca2z]

@Hip wow thank you for that great info ! I get it now !!
I guess I better check out that ME/CFS roadmap ! Thank You

 

[Rebecca2z]

@heapsreal , I will have to look into this - I believe there is info somewhere in my file on this.
Get back to you !

 

[Gingergrrl]

@Gingergrrl - oh god I would absolutely say you can't go off the anti-histamines, way too dangerous. I am surprised Stanford doesn't have any suggestions for people in your situation. I am sorry you are going through all this. It is just awful and not much you can do at least right now. Maybe another medical institute.

I will tell you after doing some checking on doctors in neurology I have found that Stanford is 35 or 36 on the list of best neurology clinics. UCSF ( also in San Fran) is # 5. I didn't know this when I was referred to Stanford's neurology clinic, I didn't even know I had these types of issues - otherwise I would have gone to UCSF. We don't have time to mess with second best.

Contact the UCSF team and see what they say. Contact one of the doctors using their private e-mail, which can be had if you dig. I can get you a contact if you need it.

Hi Rebecca, I saw an autonomic cardio last month and he said the same thing, that I would have to go off these meds in order to have autonomic testing so I think this would be the rule no matter where I go. His testing would not have been nearly as thorough as Stanford and I really want to see Dr. J as I have never seen a neurologist since this whole thing started and he is an autonomic neuro which is perfect for me!

So I am keeping my appt with him (which is not until Feb 2016- soonest I could get!) even though they canceled my testing part of the appt due to my meds. This way, I can still have a consult with him and he was recommended so highly to me by multiple people including a very close friend who just saw him. I am hoping that once he evaluates me for all of the autonomic problems, he may be able to authorize some autonomic testing (or maybe even just blood testing or meds that no one has thought of) that I can pursue once I get back home.

I would love the info (via PM or however you are most comfortable) re: the UCSF team as well just so I can have it for the future (but my preference is still to see Dr. J.) Maybe some day I will be able to stop the MCAS meds & anti-histamines but it is definitely not any time soon!

 

[Gingergrrl]

Rebecca (and anyone else following this)- I just got a call from Stanford (just now after posting this!) and Dr. J said that he wants to make an exception b/c my case is unusual (with the autonomic dysfunction, MCAS & mold exposure) and *not* cancel the autonomic testing!!! He wants to meet with me in person for the consult and then figure out if there is any autonomic testing I can do, given my meds, that will still work! I was so happy to get this news and feel so blessed to meet with a doctor who thinks outside of the box (even though not until Feb!)

 

[daisybell]

@Gingergrrl thats fantastic!

 

[Gingergrrl]

@Gingergrrl thats fantastic!

Thanks and also thanks to Rebecca for letting me share this in the thread and want to get back to Rebecca now!

 

[Strawberry]

@Rebecca2z Did the RTX get rid of the sore throat? Pardon me if I remember wrong, but I thought I read somewhere that was one of your issues is the chronic sore throat.

 

[sillysocks84]

Woot woot @Gingergrrl

 

[Rebecca2z]

@Gingergrrl OH HAPPY DAYS ! That is the best news ever ! Keep us posted, wish you didn't have to wait so long!

 

[Rebecca2z]

@Strawberry - Hi, Yes the RTX did help my sore throat and that is a first in almost 35 years !
I have chronic candidis which has not been helped by the RTX. sob !

 

[jimells]

I crawled into that neurology lab, I couldn't even sit in the waiting room, I was laying down half on the floor and half on the chair.

It sure is hard to understand how hospital people design their institutions to assume all patients not arriving in an ambulance can sit. When I was in the ER last week I politely informed the triage nurse that I needed to lay down (I was in a wheelchair). She politely informed me that I would have to wait for a bed to open up and wheeled me out to the waiting area and parked me in front of the TV, which I mostly can't watch anyway.

Labor troublemakers like to say "Direct Action Gets the Goods" so I took direct action and made myself a bed from cushions in the kids play area. I guess maybe most folks wouldn't do this because it's too hard to challenge the rules, even rules that aren't written. Fortunately that's not a problem for me, haha.

 

[jimells]

@jimells thank you for explaining POTS. So my BP drops when standing and sitting and keeps dropping till I pass out, (unless I lay down) this is not POTS ? I need to google this POTS, wonder why my doctor didn't call it this ?

If your heart rate doesn't increase 30 or more beats per minute on standing then it doesn't sound like POTS. It sounds more like some other flavor of orthostatic intolerance.

I am on a feeding tube ( via picc line in my arm) in this TPN (Total parenteral nutrition ) they have added extra fluids to help - but it is not quite enough so I take the Northera to give me a higher BP.

Do you have much trouble with the PICC line? I've been doing some reading on the concept of a PICC line for daily saline IV. My impression is they can be prone to infection.

 

[Rebecca2z]

@jimells ~ I love that idea of making the play area cushions into a bed ! I will be eyeballing those next time I am in the ER. LOL

The only time I am thankful to Ehlers Danlos is when I have to sit in waiting room areas, I can bend into a laying down position in any chair !

 

[Rebecca2z]

@jmells, I hate the picc line !!! ( I have a port too and I don't mind that )
Yes with a picc you have to be very careful about infection, I think my IVIG helps a lot with that.
The biggest issues I have with my picc line is the tape, my skin has broken down from it. I am also allergic to all the skin preps they use when changing the bandage every week. It is a big pain !!!