Thoracic Outlet Syndrome, CCSVI??

[SophieandElle]

Hi everyone,

I was diagnosed last week with Thoracic Outlet Syndrome; however, my doctor tells me that all my other symptoms cannot be caused by TOS. These include leg numbness, tingling, twitching legs, abdomen, and feet (very small...only I notice). Also, in a vascular test, it was noticed that my feet were completely "flat" as far as getting blood to them...there is NO blood getting to my toes! I even get these lesions on my feet after car trips (they burn!). The pain is not only in my arms/hands, but even in weird places like my pelvis!

When this whole crazy mess began, MS was one of the first things I was tested for, and the MRI was negative, and MRI of cervical spine was normal.

It is obvious I have a vascular problem and need help, quickly! I saw some information posted about Dr. Ahn and his work with TOS and the jugular vein. Does anyone have his contact info? I am willing to travel to see him.

Another eerie symptom I have are these AWFUL red eyes...then after reading more of your posts I saw that Simon Lewis, author of Rise and Shine also had this (he had TOS). He had a bilateral rib removal, which I am prepared to have if it means I can have my life back.

So, yes, I have TOS, but do I also have CCSVI? How would I get tested for this?

I am anxious to get back to my life as this has been going on since September (right after I had a baby). Also, I'm a teacher and would like some type of resolution before the new school year.

Any help or insight is appreciated. If you aren't comfortable posting Dr. Ahn's information, please send a private message. Thank you all.

[lyndacarol]

Hi everyone,

I was diagnosed last week with Thoracic Outlet Syndrome; however, my doctor tells me that all my other symptoms cannot be caused by TOS. These include leg numbness, tingling, twitching legs, abdomen, and feet (very small...only I notice). Also, in a vascular test, it was noticed that my feet were completely "flat" as far as getting blood to them...there is NO blood getting to my toes! I even get these lesions on my feet after car trips (they burn!). The pain is not only in my arms/hands, but even in weird places like my pelvis!

When this whole crazy mess began, MS was one of the first things I was tested for, and the MRI was negative, and MRI of cervical spine was normal.

It is obvious I have a vascular problem and need help, quickly! I saw some information posted about Dr. Ahn and his work with TOS and the jugular vein. Does anyone have his contact info? I am willing to travel to see him.

Another eerie symptom I have are these AWFUL red eyes...then after reading more of your posts I saw that Simon Lewis, author of Rise and Shine also had this (he had TOS). He had a bilateral rib removal, which I am prepared to have if it means I can have my life back.

So, yes, I have TOS, but do I also have CCSVI? How would I get tested for this?

I am anxious to get back to my life as this has been going on since September (right after I had a baby). Also, I'm a teacher and would like some type of resolution before the new school year.

Any help or insight is appreciated. If you aren't comfortable posting Dr. Ahn's information, please send a private message. Thank you all.

Welcome to ThisIsMS, SophieandElle.

My GP also diagnosed me initially with Thoracic Outlet Syndrome. She even had scheduled me with a surgeon, when I went to the Mayo Clinic for a second opinion. At my first meeting with the doctor there, he said that he didn't know yet what I had, but it was NOT Thoracic Outlet Syndrome.

After two weeks of testing at Mayo's, they still misdiagnosed me with a herniated disc and performed an unnecessary cervical laminectomy.

You asked for "Any help or insight;" here are my thoughts:

Since I am now focused on vitamin B12 deficiency, which can appear in any person at any time of life and can have neurological symptoms, I am curious to know if a B12 deficiency was ruled out in those "first things [you were] tested for." Your symptoms are shared by many conditions, including MS and B12 deficiency.

Being pregnant and having a baby takes many nutrients out of a woman's body. I urge you to request testing for nutrients, such as vitamin B12, vitamin D, magnesium, zinc.

There are others here who are better able to answer your other questions. All the best to you.

[SophieandElle]

Thank you for taking time to answer.

Yes, I have been tested for thyroid, vitamin, liver/kidney function, ESR, ANA, the full rheum. panel of blood tests, folic acid, b12, d, etc, etc!

How long from when you were originally told you had TOS to getting the MS diagnosis?

[lyndacarol]

About 11 months from TOS diagnosis to MS diagnosis.