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Vascular Ultrasonography

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Thanks to all who responded and hope I didn't get too off track from what the original poster was asking!

Am trying to figure out for severe dysautonomia where blood not going to lungs and heart when I try to stand and walk, if a "vascular study" would help assess & treat this or if I am totally misunderstanding and off track?
This blog might be of interest to you http://www.cortjohnson.org/blog/201...l-ischemia-key-pots-chronic-fatigue-syndrome/ especially the last paragraph which reads;
"It may be that your next bout of transient ischemia, which can show up as pain, pallor, tingling and other symptoms is simply the next part of your body you put under stress. Ischemia may be occurring in your muscles when you exercise, in your brain when you think hard and if the Workwell researchers are right, in your lung muscles when you breathe hard" i.e. the problem could be one of oxygen extraction rather than vascular perfusion.

The Workwell Foundation's cardiopulmonary exercise testing, as part of their ME/CFS research, might be something e to consider. http://www.workwellfoundation.org/testing-for-disability/
 

MadeleineKM

Senior Member
Messages
205
Your symptoms appear to be similar to those of Raynaud's disease/syndrome.
Yes I got the diagnose Raynauds, lots of ME pasients got this because its much bigger chance with ME. It affects the veins into the brain and heart and when the veins in the neck contracts many symtoms get more painful and I function less so after getting aware of this I know more to do about it in the daily wich helps a bit to not make it worse:)
 

Eeyore

Senior Member
Messages
595
My PCP has referred me for vascular studies. My problem of late has been lower limb peripheral edema. July was VERY hot for me - and I had a lot of problems then. My lower legs get huge, tight, and very uncomfortable, even painful sometimes. It is exacerbated by heat and standing/sitting, and improved by cold and lying down or at least putting my feet up. I also get a very! painful burning sensation in my feet if the room gets to even normal room temperature for any length of time, but almost always this occurs at night. I sleep with my feet sticking out of the covers and I use air conditioning most of the year - even though I live near NYC. My mom, who had a POTS/ME like syndrome as a teen, gets this too - she has the same foot pain, the same swelling in her lower limbs, and the same tendency to syncope. My lower legs and feet especially do not sweat at night. I do not know why they sweat in the morning but not at night - but apparently, this is common for small fiber peripheral neuropathies. Both mom and I have also lost the hair on our lower legs - also associated with peripheral nerve damage. I used to have hairy legs all the way down to my feet - and even hairy hobbit feet - but not at all anymore. The lower 6-8 inches of my legs have very little hair left.

I'm not sure what the studies will reveal, but both my doc and I suspect the issue is more microvascular than macro, and there may not be venous insufficiency (e.g. valve issues, etc.) in the way that an ultrasound could identify.

I have had carotid ultrasounds before. There seems to be IMT (thickening of the intima media) but no other evidence of plaque. I had extremely high peak systolic velocities when I had it tested when I was in my early 20's. No one knows why really. Probably a POTS thing.
 
Messages
41
Location
NZ
My PCP has referred me for vascular studies. My problem of late has been lower limb peripheral edema. July was VERY hot for me - and I had a lot of problems then. My lower legs get huge, tight, and very uncomfortable, even painful sometimes. It is exacerbated by heat and standing/sitting, and improved by cold and lying down or at least putting my feet up. I also get a very! painful burning sensation in my feet if the room gets to even normal room temperature for any length of time, but almost always this occurs at night.

My lower legs also have swelling @Eeyore. I have ‘cuffs’ of tissue that ring my lower calves. I already had lipedema though (which is a not-very-rare-but-rarely-diagnosed type of adipose tissue disorder.) The lymphedma is secondary. I’ve been waiting for a vascular referral to come through to find out what’s going on. The lymph system seems to be a no-man’s land of specialist care. But vascular seems the closest to start with and it’s certainly involved.

Things which seem to be helping me with this are losing some weight and possibly increased vascularity from managing to get to the gym currently. Just my thoughts for now as I can’t specifically treat the swelling in case I do some damage with compression socks etc. - My doctor told me to avoid compression but the weight loss is needed and seems to be helping along with light gym work. I have no clue what is going on. I tend to end up with bad bruising and my skin just takes an age to heal if it gets damaged.

My GP mentioned a possible technetium scan which is a non-invasive nuclear medicine scan where they inject a small amount of radioactive substance to track where there might be problems.

Sorry to the original poster, I have no personal info on vascular ultrasounds but I'm interested in others' experiences in this area.
 

Eeyore

Senior Member
Messages
595
I'm familiar with lipedema, but I don't have it (my understanding is that it does not affect men). My ankles aren't swollen at all when I wake up if I've slept in bed all night. They get worse as the day goes on, and worse in the heat - by the end of the day, if I've been active, my ankles will be swollen, as well as calves, and I'll have veins bulging in my feet.

Weight loss doesn't really work with lipedema as I understand it. I think the only good therapy is surgical.

Mine is what's called dependent edema, and possibly idiopathic venous insufficiency (that is tentative and it depends on what the vascular doc says). This means it goes away at night and is gone in the morning, then gets worse all day.
 
Messages
41
Location
NZ
You're quite right, I didn't notice your avatar. As far as I know lipedema does only affect women and the weight loss doesn't affect the lipedema at all. But it does reduce fat where it can and I think it is helping with the lymphedema (which goes to the tops of my legs.) My jeans are all currently very loose and previously, one leg (in particular) was tight. My [lymph]edema is consistent, but slightly more comfortable with elevation but the right is larger in general.

Surgery for lipedema is the only lasting option as far as I know, but it's a very very specialised area of liposuction I believe. Not something I'd consider with my other issues in case it made things worse. I only throw lipedema into discussions as most people (and doctors) are totally unaware of it but it's significant for those who have it and relatively common.
 

Eeyore

Senior Member
Messages
595
Yep, I know someone with it. It must be very frustrating that weight loss doesn't work.

Liposuction would not help me at all - mine seems to just be fluid as it comes and goes, maybe some kind of inflammation causing microvascular damage / increased permeability. It definitely seems to be familial as mom has it too.
 

Gingergrrl

Senior Member
Messages
16,171
@Eeyore,

You seem very knowledgeable re: vascular studies and I was curious from your perspective if they could help me? My issue is that my docs think that blood is not adequately perfusing my lungs & heart when I stand up.

The only med that helps me is Midodrine and even when it does not raise my BP (sometimes it does but other times it does not and my BP stays in the 80's/50's), yet it always helps my breathing 100% of the time and improves my stamina.

My MCAS doc thinks this is due to preferential perfusion and it is helping the blood go to core, vital organs (maybe at the expense of the blood going to other places?) Would a vascular study demonstrate this phenomenon or am I way off track?
 

Eeyore

Senior Member
Messages
595
I don't think so, but it's possible. Vascular studies are more about documenting peripheral arterial disease, DVT's, venous insufficiency, valvular defects, etc. I'd mention it to your doctor though.

If I were you I'd look into getting your blood volume checked and maybe a tilt table. You might benefit from florinef (fludrocortisone) if it's low. If your ADH levels are low, as is common in ME patients, then your blood volume will be low.
 

Gingergrrl

Senior Member
Messages
16,171
I don't think so, but it's possible. Vascular studies are more about documenting peripheral arterial disease, DVT's, venous insufficiency, valvular defects, etc. I'd mention it to your doctor though.

If I were you I'd look into getting your blood volume checked and maybe a tilt table. You might benefit from florinef (fludrocortisone) if it's low. If your ADH levels are low, as is common in ME patients, then your blood volume will be low.

@Eeyore Thank you so much and that actually clarified a lot. Someone (not a doctor) had mentioned to me that I needed a vascular study and I was never able to quite clarify what this meant!?!

Every single doc of every speciality that I have seen since this began 2-3 yrs ago has told me that I have low blood volume so I am now taking this as a given (without an official blood volume test.) I tried Florinef for several months about a year ago and it made me sicker (daily headaches, intracranial pressure) and it never gave me any symptom relief.

I had a botched TTT while in hospital the first time (won't bore you with the details) but I hope to have a better one with a true autonomic specialist soon and have two potential options. My ADH/vasopressin level is non-existent.

For whatever reason, Midodrine is the best med I have ever tried and after playing with the dose this past month or two, I have found significant improvement in my breathing, I can walk further steps without wheelchair, and have more stamina- the only drawback for me is that it is very sedating but I can live with it. Am hoping this lasts and my future autonomic doc can build on it.
 

Eeyore

Senior Member
Messages
595
Dr. David Bell did quite a lot of work with ME patients with low blood volume and positive tilt table tests. He also used midodrine a lot - in fact, he was one of the first. I'd look into his work, although he's now retired from private practice. He was (and still is) a great advocate for us.

There may be other treatments that could help you. I'd look into POTS in particular. There's a really good POTS center at Mayo and another at Vanderbilt. Dr. Phillip Low at Mayo was the founding father of POTS and their testing is very thorough.

Desmopressin can be used to increase blood volume (it works like ADH) - but I'm not sure if you would have problems with it if you had problems with florinef. Also, the autonomic specialist I saw suggested provigil, ritalin, or strattera, as these stimulants often help improve vasoconstriction.
 

Gingergrrl

Senior Member
Messages
16,171
@Eeyore

Dr. David Bell did quite a lot of work with ME patients with low blood volume and positive tilt table tests. He also used midodrine a lot - in fact, he was one of the first. I'd look into his work, although he's now retired from private practice. He was (and still is) a great advocate for us.

Thanks and I will google Dr. Bell and am actually not too familiar with his work although I have heard a lot about him.

There may be other treatments that could help you. I'd look into POTS in particular.

I've looked pretty thoroughly into POTS and my very first symptom was IST which morphed into POTS but with beta blocker it is well controlled. But if stop BB, it comes back. Bigger problem is low BP and shortness of breath.

Also, the autonomic specialist I saw suggested provigil, ritalin, or strattera, as these stimulants often help improve vasoconstriction.

I can't tolerate anything stimulating and it takes me 4x as long as normal person to process these kinds of meds per my SNP's and doctors. They give me agitation, tachy, insomnia etc. But am seeing new autonomic cardio next week and trying to get into the autonomic disorders clinic at Stanford and am open to all options in spite of everything I just typed if chance they could help me.

Thanks again!