Hi,
As i said yesterday i had a Doppler exam, and there was no stenosis in the jugular veins - just that the right JV looked a bit thinner than the left - not stenosis tho.
So this morning i had a Phlebography/Venogram.
It lasted 2 hours, i was sedated - no Anaesthetic.
The doctor checked EVERY vein in my body including all the Plexus ones.
THERE WAS ZERO PAIN!
Every vein was fine, No narrowing/cxonstriction/twisting, etc.
I have photos and videos of this - i will upload later.
The doctor said i had a normal venous system, just like a healthy person.
I now feel weaker than normal but could be due to the stress on the body from the procedure and may be short term.
So now i know i definitely don't have CCSVI, im lost again :/
As every vein was tested with the dye, is there Any chance the doctor could have missed something?
Two years ago i had a lyme disease test as i heard it mimics MS - Western blot test, but it came back negative.
- - i got tyested for lyme as i started LDN in Jan 08', felt great for 6 weeks (mobility improved a bit), but then became Much worse, very quickly, i was told this could be a misdiagnoses for Lyme, as MS'ers have had this problem with LDN to then find they have Lyme.
- i had a positive Lyme disease 'Specialist test: LTT-MELISA test, which came back positive - showing "ongoing active lyme borrelia.
At the same time as the LTT-MELISA test i had a Western blot test too - it came back negative.
So as i had a positive LTT-MELISA test, i tried the safer alternative treatments as didnt want to do antibiotics.
I tried a Rife machine - Colloidal Silver - Salt&Vit C protocol
But i had NO reaction - so then tried antibiotics for a while in May this year, but again NO reaction.
The doctor said she doesnt think i have MS , plus i don't have a lot of the typical MS symptoms - eye sight, upper body movement problems, cognitive problems, - mine are all lower body only (legs strength/balance/stiffness when first standing/bladder)
So as you can see im so confused, what the hell do i have!?!
Had the Phlebography/Venogram today-All my veins are NORMAL!
have you ever had an MRI done that showed lesions?
and if u had markers for lymes disease - how many days of antibiotics did you take?
Public health canada says, "Several antibiotics can treat the illness. The sooner treatments starts, the better. Most cases of Lyme disease can be cured with a 2-4 week treatment of doxycycline, amoxicillin, or ceftriaxone. People with certain neurological or cardiac problems may require intravenous treatment with penicillin or ceftriaxone. Patients diagnosed in the later stages of the disease can have persistent or recurrent symptoms requiring a longer course of antibiotic treatment."
Perhaps you did not have a long enough course of antibiotics?
and if u had markers for lymes disease - how many days of antibiotics did you take?
Public health canada says, "Several antibiotics can treat the illness. The sooner treatments starts, the better. Most cases of Lyme disease can be cured with a 2-4 week treatment of doxycycline, amoxicillin, or ceftriaxone. People with certain neurological or cardiac problems may require intravenous treatment with penicillin or ceftriaxone. Patients diagnosed in the later stages of the disease can have persistent or recurrent symptoms requiring a longer course of antibiotic treatment."
Perhaps you did not have a long enough course of antibiotics?
Yes i had an MRI before diagnoses which showed several lesions in the brain and i think one on the lower spine.
I tried antibiotics for one month - it was three different abx.
I know if youve had Lyme for years you need a long course, but all other lymies have a herx reaction then improvements within a few days - i had nothing for One month.
Plus after 2 weeks i had Horrible itching on my head and face, i couldnt sleep it was that itchey, it wouldnt stop - so i thought why bother when im not getting a herx or improvements
I tried antibiotics for one month - it was three different abx.
I know if youve had Lyme for years you need a long course, but all other lymies have a herx reaction then improvements within a few days - i had nothing for One month.
Plus after 2 weeks i had Horrible itching on my head and face, i couldnt sleep it was that itchey, it wouldnt stop - so i thought why bother when im not getting a herx or improvements
Hi Adamt,
I'm glad that you had the venography without complications and free of pain. Probably you will feel a bit scruffy afterwards because of the contrast used, that might cause headaches.
Simka has found that 3% of tested MS cases do not have CCSVI. So your case is either one of this 3% or one that has been misdiagnosed.
To have peace of mind, probably you should send copies of the dvd with your venography to other experienced radiologist. Just to double check that no abnormalities were overlooked.
Have you confirmed your diagnosed MS case with other neurologists? Not all brain lesions are necessarily caused by MS. They need to fit certain criteria. So it might be a good idea to send copies of your MRI scans to other neurologists.
I was tested for Lyme's disease about a year ago. The lab report said that it was negative, but it also mentioned that there is a large margin of error so it could be a false negative. So another test was recommended.
I'm glad that you had the venography without complications and free of pain. Probably you will feel a bit scruffy afterwards because of the contrast used, that might cause headaches.
Simka has found that 3% of tested MS cases do not have CCSVI. So your case is either one of this 3% or one that has been misdiagnosed.
To have peace of mind, probably you should send copies of the dvd with your venography to other experienced radiologist. Just to double check that no abnormalities were overlooked.
Have you confirmed your diagnosed MS case with other neurologists? Not all brain lesions are necessarily caused by MS. They need to fit certain criteria. So it might be a good idea to send copies of your MRI scans to other neurologists.
I was tested for Lyme's disease about a year ago. The lab report said that it was negative, but it also mentioned that there is a large margin of error so it could be a false negative. So another test was recommended.
Some possibilities:
1 - She missed it. Dr. Sclafani undertreated in the beginning. It wasn't until near the end of his run that he tilted the imaging of the azygous and started finding malformations there in nearly everyone. Also, ivus is useful, without ivus she might have missed it.
2 - How solid is your MS diagnosis? have you been tested for Lyme or other differential diagnoses? Maybe the venogram is accurate, you don't have ccsvi, and you don't have ms
3 - You have ms and you do not have ccsvi. Somewhere between 40% (Buffalo's numbers) and 5% (numbers seen in clinical settings) or even an unlikely 80% (obscure german study that contributed to our heartbreak) of people with MS do not have ccsvi.
4-
I am sorry that you went through the procedure and are now left without a solution...
(I just saw this thread and deleted this post from DrS's thread to repost here...)
1 - She missed it. Dr. Sclafani undertreated in the beginning. It wasn't until near the end of his run that he tilted the imaging of the azygous and started finding malformations there in nearly everyone. Also, ivus is useful, without ivus she might have missed it.
2 - How solid is your MS diagnosis? have you been tested for Lyme or other differential diagnoses? Maybe the venogram is accurate, you don't have ccsvi, and you don't have ms
3 - You have ms and you do not have ccsvi. Somewhere between 40% (Buffalo's numbers) and 5% (numbers seen in clinical settings) or even an unlikely 80% (obscure german study that contributed to our heartbreak) of people with MS do not have ccsvi.
4-
I am sorry that you went through the procedure and are now left without a solution...
(I just saw this thread and deleted this post from DrS's thread to repost here...)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
thank you everyone for your replies, i will reply one at a time:
LR1234: I replied to you PM
Tmrox: when i was first dx i did ask for a 2nd opinion, but they were happy to just agree quickly with a short psychical examination
Problem is i dont have copies of my MRI, and wont be able to get them anymore
Shye: i just asked on his thread
Cece: I dont think my MS dx is solid it took them upto a year to officially dx me, i had antibodies shown in a lumber puncture and lesions in MRI, plus common MS symptoms.
As the venogram was 2 hours, with lots of photos showing all the veins being Clear, i think its fair to cross CCSVI off my list of possible causes to my problems,
LR1234: I replied to you PM
Tmrox: when i was first dx i did ask for a 2nd opinion, but they were happy to just agree quickly with a short psychical examination
Problem is i dont have copies of my MRI, and wont be able to get them anymore
Shye: i just asked on his thread
Cece: I dont think my MS dx is solid it took them upto a year to officially dx me, i had antibodies shown in a lumber puncture and lesions in MRI, plus common MS symptoms.
As the venogram was 2 hours, with lots of photos showing all the veins being Clear, i think its fair to cross CCSVI off my list of possible causes to my problems,
When I was diagnosed with CCSVI, I was very worried that I might also have MS. As you might remember I have Transverse Myelitis not MS.
So I phoned up the three hospitals where I have had my MRI scans in the past. To my surprise they all kept copies of my scans in their computers. I was told that they have to keep a copy, that is in the UK. You might have a chance to get copies if that is the case in France as well.
Every hospital sent me a CD with my MRIs and another one was kind enough to send me the actual X-ray sheets. I recently passed these scans to other neurologists, with the note that I also have CCSVI. They all agreed with my previous diagnosis, TM and not MS.
So I phoned up the three hospitals where I have had my MRI scans in the past. To my surprise they all kept copies of my scans in their computers. I was told that they have to keep a copy, that is in the UK. You might have a chance to get copies if that is the case in France as well.
Every hospital sent me a CD with my MRIs and another one was kind enough to send me the actual X-ray sheets. I recently passed these scans to other neurologists, with the note that I also have CCSVI. They all agreed with my previous diagnosis, TM and not MS.
Are you interested in TOS?
Maybe you are not interested, but just in case the Thoracic Outlet Syndrome can compress veins. In case you want to get tested you could try:
Thoracic Outlet Syndrome - Vascular
Mr George Hamilton or Mr Daryll Baker.
Department of Surgery
Royal Free Hospital
Pond Street, London NW3 2QG
Tel: 0171 8302031
baker AT freevas.demon.co.uk
Thoracic Outlet Syndrome - Vascular
Mr George Hamilton or Mr Daryll Baker.
Department of Surgery
Royal Free Hospital
Pond Street, London NW3 2QG
Tel: 0171 8302031
baker AT freevas.demon.co.uk
i have cntacted the hospital (Uk) where all the tests were, but they said as it was 8 years ago, the files aren't there.TMrox wrote:When I was diagnosed with CCSVI, I was very worried that I might also have MS. As you might remember I have Transverse Myelitis not MS.
So I phoned up the three hospitals where I have had my MRI scans in the past. To my surprise they all kept copies of my scans in their computers. I was told that they have to keep a copy, that is in the UK. You might have a chance to get copies if that is the case in France as well.
Every hospital sent me a CD with my MRIs and another one was kind enough to send me the actual X-ray sheets. I recently passed these scans to other neurologists, with the note that I also have CCSVI. They all agreed with my previous diagnosis, TM and not MS.
I google'd Transverse Myelitis, and this sounds Alot more likely than me having MS.
Only my lower body is affected = legs strength, balance, stiffness (when first standing only), and weight loss.
I have no problems with my upper body, which most MS patients do.
How long have you had TM?
How do you treat it?
Does it improve your mobility?
i google'd this, and i dont have any of the symptomsfrodo wrote:Maybe you are not interested, but just in case the Thoracic Outlet Syndrome can compress veins.
i dont have neck/arm pain
just demylination symptoms
No, i did tell her if she could, but she said she can reach any vein from the right side.shye wrote:adamt
did your dr go in from the left femoral, or not?
And looking at my CD - photos, she did
In transverse Myelitis there is a demyelination of the spinal cord only, only one lesion along the spine. All the symptoms you have (mobility, sensory, pain) will be from wherever you have the lesion down there, that is why it is called transverse. Cognitive skills are not affected.
It is not my case, but a few TM patients can present brain lesions due reasons different to MS, such as age related.
The majority of TM patients do not have oligoclonal-bands (common in MS). Those TM patients with o-bands are at a much higher risk of developing MS.
If you do not have your MRI scans, perhaps you could request your docs to have a new one (brain+spine) done with contrast. A spinal tap will be a good idea to check if you have o-bands.
I was diagnosed TM in Dec 08. The treatments will depend on the extent to which you are affected (mobility, sensory) and whether you have o-bands.
I was treated with a high doses of steroids for a short period. This was to reduce the inflammation. Others with o-bands might have different treatments to prevent MS.
Other than that, we take similar medication to MS people to treat neuro-pain, spasms, hypersensitivity.
Mobility might improve after the onset of TM. This improvement starts within 3 to 6 months of the onset of TM, and continues for years. Previous studies suggested that improvement stopped in the second year. However, more recent ones suggest that there are further improvements after the 2 years, albeit small.
You might want to have a look at the forum for TM. There are a lot of people there experts in the condition, and who have lived with TM for years and years. Some are severly affected (quadriplegic) and others fully recovered.
http://www.myelitis.org/forum/
It is not my case, but a few TM patients can present brain lesions due reasons different to MS, such as age related.
The majority of TM patients do not have oligoclonal-bands (common in MS). Those TM patients with o-bands are at a much higher risk of developing MS.
If you do not have your MRI scans, perhaps you could request your docs to have a new one (brain+spine) done with contrast. A spinal tap will be a good idea to check if you have o-bands.
I was diagnosed TM in Dec 08. The treatments will depend on the extent to which you are affected (mobility, sensory) and whether you have o-bands.
I was treated with a high doses of steroids for a short period. This was to reduce the inflammation. Others with o-bands might have different treatments to prevent MS.
Other than that, we take similar medication to MS people to treat neuro-pain, spasms, hypersensitivity.
Mobility might improve after the onset of TM. This improvement starts within 3 to 6 months of the onset of TM, and continues for years. Previous studies suggested that improvement stopped in the second year. However, more recent ones suggest that there are further improvements after the 2 years, albeit small.
You might want to have a look at the forum for TM. There are a lot of people there experts in the condition, and who have lived with TM for years and years. Some are severly affected (quadriplegic) and others fully recovered.
http://www.myelitis.org/forum/
-
- Similar Topics
- Replies
- Views
- Last post
-
- 0 Replies
- 1757 Views
-
Last post by frodo