Lots of testing--others' experiences?

[RecipeForDisaster]

I saw a new neurologist in Boston yesterday. He is going to repeat my TTT but with cranial Doppler, in December... he wants skin biopsies for SFN, an MRA and MRI of the brain and neck, and maybe some other stuff. I asked if he thought all of that was really necessary and he said yes. It sounds like it's all an hour or more away from me since he wants it all done by providers he knows... so the logistics are an issue since I don't drive more than 30 minutes alone. I am a little scared about the MRI and MRI, particularly the contrast. The biopsies make me a bit nervous as well. Can anyone shed any light on any of these?

 

I have had some improvement on midodrine-I started it last week. That's a relief but obviously it's not enough (maybe 30% better for a few hours?) and I try to limit how much I take. Plus, I can't take it at night which is often my worst time. That and metoprolol, plus, to a tiny extent, compression, are all that have helped me at all. I kept an hourly BP log for a few days-in MD offices it is running 15-20mmHg higher so it's very misleading. It looks adequate when I'm there but I get home and can be 75/45 soon after.

 

The neurologist told me he had a patient just like me, from Hawaii, who he was never able to figure out  I left a little disappointed about the lack of answers, the dread of these tests and hte travel, and that story about the other patient. 

[WinterSown]

You can go to any doctors or service you want with a prescription, you are not forced to use the people that the neuro wants you to see. Tests are tests and are done accurately by the same standards and procedures. His radiologists will do as good a job as the radiologists near you. I haven't had skin biopsies but I've had my head scanned numerous ways with and without dyes. They will ask your allergies. I didn't have a problem. The radiologist group I use has several sites and my records are accessible at all of them. I continue to use them because I also am comfortable with their care. If you have used a particular radiologist in the past and you like them then go back for your scanning. 

 

[RecipeForDisaster]

Thanks. I decided to try to go with the flow and make a trip to the company he wanted me to use... because I can have all 4 scans done at the same visit. I don't be know if he ordered any standing tests, though, and I haven't gotten a call back. Plus, they arranged this and didn't give the orders to me, so I would have had to had them send the orders somewhere else. 

 

The company told me they didn't see any contrast in my orders, but he did mention it. Not sure what to expect... I'm not just concerned about allergies but even just the IV because I have been passing out when I get stuck now that my BP is so low to begin with. I'm not afraid to pass out and not afraid of needles, but I am dreading how they will freak out if I am on the floor.

 

i hope they have good music-I'm going to be there a long time! This is booked for 9/1. 

[WinterSown]

Why don't you call them ahead and ask their protocols, let them know you are nervous about fainting and want to know how the staff might handle that if it occurs during your tests. I assume they will let you know that they have procedures in place and may even explain many of them to you. After my diagnosis I began to notice that several of my doctors keep ammonia packets taped to their exam room wall right over their counter of cotton balls and tongue depressors. One of the cabinets is also labeled defibrillator. I never noticed any of this before but I assume they were always there.

I wish you luck with your tests, may you have the best of all outcomes.

 

T

[RecipeForDisaster]

I have had staff members put ice packs on my neck and head when I have passed out... I'm not worried about what will happen to me (I pass out enough alone and with others) but afraid they will freak and call EMS. Good idea, I will see if I can find someone knowledgable there. Thanks for the well wishes. Apparently, if certain findings are present, I will go to NY for a standing MRI.

[Chaos]

Have had the skin biopsies for SFN.  Did not seem like a big deal.  Basically like any other skin biopsy at a dermatologist (for example).  A bit of local anesthetic and then they do a punch biopsy.  Leaves a small round hole that you cover with a bandaid.

This doc sounds like he is being thorough so hopefully he will get some answers for you.  If not, at least you will have more data to take with you if you have to move on to someone else.

While all scans may be similar, the docs who read and interpret them are definitely not all equal.  He may trust the docs he works with to be thorough in their interpretations of the results. 
I had a friend who died of a brain tumor.  The local docs said the scan was clear.  The specialists who looked at the same scan a year later said they saw the tumor beginning in that first scan. Had treatment started then, she may have survived.  So, assuming you trust the ordering physician, it might be a good idea to go with the docs he recommends.  Having worked in healthcare for over 30 years, I have seen that a lot of the good docs tend to hang together, and likewise with the less than stellar ones. 

Good luck with your testing.  Hope it is worthwhile in helping you get some answers, and more importantly, some ideas for treatment that helps you.

 

 

[RecipeForDisaster]

I had my MRIs and MRAs last night. Every staff member said I was nuts to do them all together and that it would be very difficult for me... they were really nice, though. I really found it a piece of cake. I am sensitive to noise, but it wasn't that bad other nan one startle from the first sudden, loud sound. Their headphones weren't good and I couldn't ear the music over the noise... it took about 90 minutes with no breaks and I didn't budge all that time. However, I was too faint to sit up after all that, let alone stand, so it took me a while to get going. I should have results soon.... neurologist gets them Tuesday.

[jvherenow]

I'm also being treated in Boston and had the skin biopsy two weeks ago. It was easy and hopefully it will find something useful.

The place you get the MRI done matters a lot because of the type of MRI machine they have. The new machines are stronger and, for neuro scans, that makes a huge difference. You want at least a 3 tesla magnet. Most of them are 1.5 tesla, which is fine for your knee or hip, but not your brain.