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My background:

I am a 29 year old male, white/hispanic who works full time. About two years ago I started getting peripheral neuropathies. After two years I am unable to tolerate exercise, have ballooned from 185 to 210lb, have daily scalp/forehead numbness, chronic fatigue, difficulty concentrating (started in 2004), muscle jerks, muscle twitches, and for the last 6 months have felt like I am walking on a boat due to dizziness.

I have just spoke to Dr. Dake's office and am planning on sending them all my records and taking a trip out there if they will see me. I do NOT have an MS diagnosis so I can undergo treatment if the test results indicate it.

I will be sending them my neck mri/mra, my head mri/mra, blood work, etc. All my imaging has been clean except some stenosis of the cervical canal at c5-c6 and a venous angioma at the front of my head on the right side.

If anyone who has taken the trip before has advice for me I would apprecaite it. I was told by the office that they may not see every patient if they don't think they can do anything for them, so if anyone has any advice on how to at least get seen I would really appreciate it.

Oh i also get dizzy and lightheaded after my workouts, which is why I don't work out anymore or walk much. It really sucks.

Thank you!!!!

Gandrewl1981 wrote:Oh i also get dizzy and lightheaded after my workouts, which is why I don't work out anymore or walk much. It really sucks.

I get this too. With MS it can be a heat intolerance issue. The gym is hotter in the summer so I am looking forward to the fall. Some people chew ice or have a smoothie or wear a cooling vest, maybe give that a try?

I have no experience with Dr. Dake so can only wish you the best with it!

I didn't realize he was seeing patients again who are self-referred. If so, that's great news. Good luck and keep us posted.

He's getting his trial underway right now, so that's probably what it is.

I have my one year follow up with him in a few weeks, and I can ask more about it at that time.

My guess is that Dr. Dake can see, and possibly treat, him because the gentleman DOESN'T have a MS diagnosis. He may have some collapsed and obstructed veins, and hey, Dr. Dake treats those sorts of things as they probably aren't doing him any good anyway. How ironic is that?

Possible moral of the story--if you think you might have MS, don't get a diagnosis too soon. Get your veins scanned, and possibly treated, first, and then find out if you really have the beast.

(Ok, before I get pounced upon, I am halfway joking, but it does demonstrate some of the absurdity of the whole situation for many folks here.)

I think CCSVI is going to create some sort of record. Normally, the DRs try to sell new class of medicines to patients while patients generally tend to be skeptical. It is the other way here and I think system does not know how to handle it ...

Sport,

I think you are right!

Sport wrote:Possible moral of the story--if you think you might have MS, don't get a diagnosis too soon. Get your veins scanned, and possibly treated, first, and then find out if you really have the beast.

This absurdity has been noted in Canada too. Much better to be undiagnosed or have TM or migraines, not MS. Then you can be treated as an individual and the IR has more leeway, as opposed to the idea that as a MS patient you are part of a group or class of patients.

Sport, totally agree. Without the internet or social networking also, I wouldn't know anything about this. Thank you TIMS.

Well done and good luck. You wouldn't be the first non-diagnosed-but-probable-MS person to get treated there. There's many that are/were in that same boat. Not just Stanford but worldwide. Hopefully you'll never get that official MS dx, but for me, it wasn't that big of a deal, "more of the same but the doc made a note on the chart", I think in years past it was more important because they couldn't start the DMD's until an official dx was made. Now it seems more of an academic consideration than anything that alters the course of treatment. Symptoms are symptoms whether the chart has MS on it or not!

Good luck and keep us posted. Hopefully that MS notation on the chart will never happen....

Mark.

Well, a way around the whole snafu may be to ask your PCP for a referral to Dr. Dake to check for possible venous malformation.

There are symptoms of jugular blockages, such as blurry vision upon awakening that improves later in the day, puffy eyes, dizziness upon bending, and I'm sure there are others.

One could probably also google symptoms of a blocked azygos vein.

Present your symptoms only to your PCP, say you're worried you may have a vascular problem and would like to see a specialist (either an IR or a vascular doctor, such as Dr. Dake at Stanford for his excellence).

Worth a try.

And to get more to your point, my level of symptoms were probably half of yours, and MS was rarely mentioned or discussed during the initial phases. Other advice to keep all that out of the discush with your PCP is spot on. There's really no secret way to get seen that I am aware of, just lay all your cards out, send on what you can and see what happens. Although it was a different time last year, I didn't have much but my own self-reported symptoms, your's sound like a good candidate for an eval but that's just me talking... My insurance covered everything btw, was just perusing one of the EOB's this a.m. (Explanation of benefits) from them, had "blocked veins" all over it. You may have a possible vascular issue, he's a top notch vascular Dr., sounds good to me!

M.

selkie wrote:Well, a way around the whole snafu may be to ask your PCP for a referral to Dr. Dake to check for possible venous malformation.

There are symptoms of jugular blockages, such as blurry vision upon awakening that improves later in the day, puffy eyes, dizziness upon bending, and I'm sure there are others.

One could probably also google symptoms of a blocked azygos vein.

Present your symptoms only to your PCP, say you're worried you may have a vascular problem and would like to see a specialist (either an IR or a vascular doctor, such as Dr. Dake at Stanford for his excellence).

Worth a try.

I'll try to get a referral if they want one, but it will be hard for me because I've seen about 5 neurologists and a bunch of other specialists trying to figure this out and they all have me pegged for anxiety (which I do have as well) but they block any attempts for me to go see other specialists writing it off as "your new symptoms are part of your anxiety"

It's funny, in one of the specialists' letters back to my GP about me he wrote, "has seen 5 neurologists, this demonstrates a lack of faith in the system." A nearly accurate assessment although it isn't just the system I question but his ability to think cognitively and outside the box. I've learned it doesn't take much to become a know nothing MD who hands out pills based on a patient fitting into a subset of symptoms. The real doctors are the ones doing the research. This also offended me in that it implies "the system" is flawless and should not be questioned.

Welcome, Gandrew---

You've really been thru it, and I'm sorry that past few years have been so rough.

Dr. Dake is an exceptional doctor. We're really lucky he's taken on studying CCSVI. You won't need a referral to see him...he took my husband after I brought him the research--no problem. You mention you have a venous angioma at the front of your head. This would be the area of a neurovascular radiologist, and it might make a difference in Dr. Dake's ability to see you...he may or may not be able to treat your jugular narrowings because of the angioma. I just want you to be emotionally prepared if he says he can't help. He's treated other patients with intracranial issues....but just be prepared.

If there is any way that you can get your current doctors to consult with a local radiologist, you may have more success, especially since you have the angioma. Staying local is really the key to getting follow up and good after care.
Whatever happens--keep us posted, and hang in there. Sounds like you're on the right path to healing.
cheer

Gandrewl1981 wrote:My background:

I am a 29 year old male, white/hispanic who works full time. About two years ago I started getting peripheral neuropathies. After two years I am unable to tolerate exercise, have ballooned from 185 to 210lb, have daily scalp/forehead numbness, chronic fatigue, difficulty concentrating (started in 2004), muscle jerks, muscle twitches, and for the last 6 months have felt like I am walking on a boat due to dizziness.

I have just spoke to Dr. Dake's office and am planning on sending them all my records and taking a trip out there if they will see me. I do NOT have an MS diagnosis so I can undergo treatment if the test results indicate it.

You may never get an MS diagnosis. There are lots of other things, some of which may actually be auto-immune. For example,

http://en.wikipedia.org/wiki/Chronic_in ... neuropathy

I know someone who has this, and heat sensitivity is a big component of the symptoms. Infusions for this condition are dreadfully expensive (like 10X the cost of MS drugs), and being a peripheral neuropathy it may have no venous component. I really hope you don't have this condition.