This Is MS Multiple Sclerosis Knowledge & Support Community

Cece I don't know what you do for a living but if you're not in research maybe you missed your calling. Second thought, maybe you are fulfilling your calling right here.

Thank you so much, Blaze.

It is exciting to be here, and one thing is FOR SURE. I'm never at a loss for something to say!

Welcome to the site, Dr. Diana. We're so happy you've joined us.

Cece,
I was thinking about your son... May I ask how old he is? I may be able to help you, but I'm kind of flying blind, here. Has he had an MRI of his head and neck? If so, could you show me an image that goes right down the middle of his head, top to bottom, between the eyes, if you will?

Is there any chance he has EDS (or you, too, for that matter?) SO MANY of us are never diagnosed, and I even missed it myself on my own body the first time through. I'm happy to try to talk you through that if you would like.

If your son is showing brain fog, likely he is not getting enough oxygenated blood into his head. Two "quick and dirty" things you can try are 1) a soft cervical collar for night time (just trim it down with scissors to fit him, and put a cute sock on it to make a game of it -- you can buy them at the drug store). This may help his drainage at night. During the day, I'd try an abdominal binder on him. You can usually get one at the drug store that are too big. Poo. I go on line and order a small one, and some of them can be made as small and tight as you need to make them. See if that doesn't help him when he is up and around.

Depending on his age, other symptoms, etc., I'll have more advice for you, OK?

Both of my kids are affected (and one of our dogs!), so I've got lots of ideas, especially if he is too young for the angioplasty. BTW, my son went through angioplasty just beautifully. He still gets fatigued, but the endo. wants to wait until summertime to work on his hormones.

We have "endocrinology gone wild" in our family (likely due to pressure on our hypothalamus), but mine is finally settling down after a few months on Diamox. I had episodes of horrible acne that came and went, facial hair (ewww..), my weight went up and down for no reason, my hair had times of being a brillo pad, only to go away later, I had episodes of EXTREME hair loss, that stopped and started for no apparent reasons, etc. Interestingly, my periods stopped (no secrets with me, I hope it's OK to share all), BUT after I was on the Diamox for about a month, my periods returned. Amazing, huh? I was also almost bipolar, and that went away, too (praise God, says my hubby).

Puberty is already "endocrinology gone wild", but we want our kids to go through the 'hell that is puberty' in the normal way, if you get my drift.

If you are comfortable with this, lay it on me. All of his symptoms, OK? We'll see what we can piece together for him, bless his heart, and yours.

I'll walk this journey with you, if you will have me.

Gentle hug,

Thank you Kathryn333,
That is so sweet. I think the corroboration will certainly go both ways (this site is like joining a 'mensa' meeting!).

I'll have enough information to blow your hair back soon, and am excited to share it with everyone. This site (and warm, welcoming people like you) make it feel like a family here (except perhaps less dysfunctional. ha).
Thank you!

Thank you, Dr. Diana. He is only five years old, that's the thing. He'll be six next month. No, neither he nor I have ever been evaluated for ED. Abdominal binders is not something we've ever talked about here, is it good for cerebral perfusion? Maybe I will try it myself too. How does the cervical collar help? I will look that up too. The inclined bed is working for him without him sliding down. He shares a room with his younger brother so it took me a long time to figure out to incline his bed safely. I ended up using this wooden trundle bed that is slightly too small, so the box spring fits inside on one end and on the other end it rests on top. It's very stable.

I'll write up that complete list of symptoms, back in a bit.

WELCOME Dr. Diana

Cece, our TIMS-CCSVI leader, has found in you an incredibly interesting, invaluable and intelligent individual involved in innumerable, immeasurable instances which identify and incorporate illustrative, inventive and intuitive information that ignites imaginations! Here is Cece's CCSVI procedure thread: Cece's turn

Here is a personal thread started by Bluesky a few days ago: A request

Here is Dr. Flanagan's (uprightdoc's) thread: CCSVI and CCVBP

So glad you found us!

[not J, i=18]

a warm and welcome hello to you dr. diana!!

what you have to offer is really i feel a part of this puzzle. the fact that you are taking your time to be here and try to help us when a lot of dr.'s and people are all about "me me me"really shows your integrity and character and just good old fashioned love for your fellow human beings. it's just great. the other doctors on this site i feel are the same so you fit right in and you have much to offer.

i see happypoet already steered you to dr. sclafani and dr. flanagan. i would be very interested in seeing how the conversation would go between you and dr. flanagan. if you have not checked him out, i hope you do. something tells me there is some common ground.

at any rate you are here and welcome.

question: i also only have 1 lesion on the cervical but never experienced cog fog. athough lately i may be having a senior moment now and again. i just got a recent mri so my chiro. and dr. flanagan could check out the bone spurs etc. in the area i have this so called lesion. we are checking a few things out yet. but looking at them with him i of course am no doc. but there is plainly seen narrowing in the cord especially where the spurs are. i could only get the cervical mri done because of beuracratic bs but the x-rays clearly show how bad my spinal structure is so there is bound to be narrowing there too. my question is with all this narrowing cause what you speak of and would the drug you use help me and others here dealing with this? tried ccsvi it did not work for me and i am worsening faster now.

i hope the mainstream in charge don't put up the road blocks for you and us wanting tested. what type of test is it exactly do we get to determine if we have what you speak of? i am not at all familiar with this.my case has always been not the norm--if there is a norm.

again, welcome and thank you.

HappyPoet wrote:WELCOME Dr. Diana :)

Cece, our TIMS-CCSVI leader, has found in you an incredibly interesting, invaluable and intelligent individual involved in innumerable, immeasurable instances which identify and incorporate illustrative, inventive and intuitive information that ignites imaginations! Here is Cece's CCSVI procedure thread: Cece's turn

Here is a personal thread started by Bluesky a few days ago: A request

Here is Dr. Flanagan's (uprightdoc's) thread: CCSVI and CCVBP

So glad you found us! :)

[not J, i=18]

Indubitably!

I welcome you too, Dr. Diana. Your mention of the CSF/ICP is intriguing. (an explanation for lower blood pressure/slower heart rate in Pw"MS"?) I had sudden discharge of "synovial" fluid (my descriptor - due to colour and consistency) from my nose early in my course (no doctor found that remarkable. It was pink/brown in colour), and upon reflection, have had an inexplicable "rhinitis" ever since.

The abdominal binding idea is also intriguing. I am convinced that the gut has a huge involvement - as a major component of the immune system (I don't believe that it is an hyper-immunity, but a suppressed immunity).

The soft cervical collar is interesting too. I have an idea about increasing blood flow with a product called Farabloc (a stainless steel mesh woven as a fabric. Google has lots o' links.). I have been trying to find one I have about here somewhere, to experiment.

Troublesomely, I have a 4-years old who is very much like me physiologically, and I fear, is exhibiting early signs.

It's great to have another curious and candid medico on board here!

*(edited because in elevated ICP the heart rate is slower, not faster - as I had written.

included Dr. before Diana.

It must have been late-night hypoxia...)

DrDiana wrote:I was going to jump in when I had my site up, but this seemed too important to ignore for you all. Can you help me get this to Bluesky63, Cece, ikulo, blossom and HappyPoet? I need to learn how to insert quotes, articles, etc into this site and contact people directly (learning curve).

Contacting people directly: To send a "Private Message" (PM) to someone's user name on this site, look in the "Modules" section on the leftmost side of the page. Click on "Private Messages" to be taken to a page that lists four headings: Inbox, Sentbox, Outbox, and Savebox.

Note: Outbox is where your outgoing PMs are stored UNTIL they've been opened at which time the PMs are then moved from the Outbox to the Sentbox.

I sent you a PM that explains how to use quotes.

~HappyPoet

Hello Dr. Diana.

Hi Cece, am I right to send you an answer in front of the group? If you ever need a PM, just let me know, OK?
5 years old - how sweet... Depending on the symptoms you shoot my way, if it sounds like he has hypoperfusion to his brain, an abdominal binder can be a huge help. The trick is finding one to fit him! (I found one that can be as tight as you want it to be on the internet. Perfect). Does he show orthostatic intolerance? There are days I wear mine 80% of the time. If it helps, he and you will know immediately (I mean the minute he puts it on). At that age, though, you have to be sure he isn't fussing about the weird feeling of the binder itself, because -- trust me -- it will be something he'll mention!
Good for you for figuring out how to slant his bed! Is it helping?
The collar -- IF you guys could possible have EDS, the collar will prevent you from getting into these weird hyperextended positions that can cut off blood flow (both directions). It is another option that may help you overnight. When it works, it works immediately. One patient I was working with had suffered for 3 years, and felt like she was "the girl her husband married" again after ONE night. My son CRIED the mornings after he forgot to put on his collar.

Now that we are on Diamox, we don't need the collar as much, interestingly. Details on that to come.

I'm so sad that your son is affected, but so excited that I may be able to help you. Cece, we are not "cured", but we are SO much better now. I had gotten so bad that I couldn't remember my dog's name or my address. I also was "dragging around a toddler on my right arm and leg", if you know what I mean.

I'm happy to share with you all that I've learned.
Hang in,
DrDiana

Hi HappyPoet,
As a fellow logophile, I like you already. Thank you for catching me up! And thank you for the 411 on 'Forum 101'. ha.

One of the patients/friends I'm working with is Dr. Sclafani's patient, and I sent him an email with "my theories" with EDS. I likely overwhelmed him.

Dr. Flanagan and I have 'been around the block'! He is the one who was able to explain the anatomy of brainstem and CSF in that area. Brilliant! A lot of EDS patients have all of the symptoms of Chiari and/or retroflexed odontoid (the bone on the other side of the brainstem pushing into the brainstem), but MRI's come out 'clean'. That's where I started to make some real progress in figuring some of this out.

I'm looking forward to getting to know you better!
Dr.D

thank you Dr.Diana, I've been meaning to put together a list of symptoms but send that to you by pm, still it is good to hear your suggestions here on the open forum so others can benefit as well!

Hi Blossom,

I'm sorry to hear that you are having so many problems.
I'm happy to help if I can. Have your docs told you if you have spinal or cranial stenosis?

The idea here is to 'fix' what we can and protect the rest. As such, my first thought goes to brain health. Do you have an MRI (preferably with a pic down the middle, between the eyes, if you will)? What we're looking for is any sign of poor fluid dynamics (in or out or both).
If you don't have an MRI, sometimes we can try some things based on your symptoms. Can you help me with an MRI or your symptoms? Oh, and medications/supplements you may be taking? I'll do my best, Blossom.