Can Someone Please Help???

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Can Someone Please Help???

Postby alexth14 » Wed Jan 13, 2010 1:59 am

I'm a new member to this forum but I have been reading threads here for a while. Im a 26 year old male who started having problems in July of 2009. I have had mri of my brain once and of my entire spine twice, all coming back normal, but continue I to have problems. It started out as a embarrasing problem man tend to have with MS. Now im starting to have problems with my legs. I work on powerlines so I have not been working trying to figure out whats wrong. Ive been to the neurology department at stanford and got no where. The only thing I have been told is that if it is infact MS, it looks like primary progressive.
I have been reading here that there is no help for primary progressive ms in regards to ccsvi???? I guess I'm triying to ask if anyone has had bad news after being tested for ccsvi and having ppms???? Could I be screwed having ppms at only 26??? I have emailed Dr. Dake and was emailed back telling me that there is a new trial starting this year. My life as fallen apart last couple of month and have become desperate for any help. Im sorry for the long sob story but would appreciate any advice or answers to my questions.......Thank you
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Postby wonky1 » Wed Jan 13, 2010 3:02 am

Hi Alex
Firstly don't think that this will not help primary progressives.
I'm primary progressive and it helped me a lot.
Professor Zamboni found that the 10 primary progressives in his study, after initial improvement returned to baseline after 18 mths. They stopped progressing.
10 subjects is statistically insignificant, certainly not large enough to infer it won't help us.
This is a scary time for you but be positive as there is a (and I'm gonna have to use the C word) CURE! :D
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Inclined Therapy can help you a lot!

Postby AndrewKFletcher » Wed Jan 13, 2010 3:26 am

alexth14

Read the Inclined Bed Therapy threads on this forum.

Primary progressive ms has responded to Inclined Therapy.

All you need to do is avoid sleeping flat by tilting your bed, raising it 6 inches or 15 cm's at the head end.

Make a list of every symptom / difficulty you have from day to day and then report back to us when you notice changes.

Andrew
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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Postby alexth14 » Wed Jan 13, 2010 3:27 am

Thank you for responding Wonky. I had read your posts before joining the forum and was happy to hear your improvements(gave me a lot of hope). I dont mean to ask the same question you just answered but I was under the impression Dr. Z was unable to operate on patients with ppms...Something about that all ppms having abnormal venous structures. Sorry im still pretty green when it comes to forums but here was a quote out of a thread explaining what im talking about.......

"There is one issue that is particularly important for you about the findings of Zamboni and his colleagues. While they note consistent abnormalities on venous Doppler flow studies that seem to stem primarily from the azygus venous system in patients with primary progressive MS with spinal predominant symptoms, on venous angiography, they note a very disturbed venous architecture training the spinal cord in all patients with primary progressive MS. Dr. Zamboni freely acknowledges that there is no possible way to reconstruct this aberrant venous system that seems to be typical of patients with spinal primary progressive MS."
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Postby alexth14 » Wed Jan 13, 2010 3:32 am

Sounds good Andrew I appreciate it. This is the most advice I have had since my problems have started....thats also after seeing 4 doctors. So thanks again.
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Postby wonky1 » Wed Jan 13, 2010 5:21 am

Alex
Even though I have primary progressive my azygous vein was fine.
My problems even though I have spinal lesion was my jugulars, with an inverted valve in one and a membrane blocking the other.
This was operable.
I've just read the Zamboni paper again and yes he did not treat some of the azygous twisting found in PP. This was because of a lack of a suitable size of stent and he says it is likely that this accounts for the less favourable outcomes for PP.
Now there is a need for longer stents hopefully the stent manufacturers will make them.
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My Doppler and MRV scan for CCSVI

Postby manojag22 » Wed Jan 13, 2010 5:57 am

Hi,

I've got myself tested for CCSVI after reading so much success about it, but both of my
tests came out negative. I'm not sure whether they have been done correctly or not since
expertise on this is currently not available here in India.

Is there any way team here can help with my scan and reports, all the scan and reports
are available in the following link.

http://hotfile.com/dl/24000592/d4e0c68/scans.zipx.html

Thanks & Regards

Sunny
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Postby alexth14 » Wed Jan 13, 2010 9:14 am

Got it wonky thanks!
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Postby tzootsi » Wed Jan 13, 2010 9:29 am

Alex, although CCSVI seems to be the most promising treatment for any kind of MS, there are several other things you should start on ASAP:
- LDN - This is a mild prescription drug that has been found to be very helpful for all kinds of MS. The trick is to try and find a doctor to prescribe it. Do a google on Low Dose Naltrexone for tons of info.
- Diet changes - Making some changes in the kinds of foods you eat can be quite helpful. Go to the 'MS Recovery Diet' website, the 'Direct-MS' website, and 'Terry Wahls' website.
- Supplements - There are lots of people who feel that things like fish oil, vitamin D, co-q10, magnesium, etc, can be very helpful. A new supplement called idebenone looks very promising for PPMS, and is actually in trials. You can find lots of information on this website, as well as the others I've mentioned.

Be proactive!!!
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Postby thisisalex » Wed Jan 13, 2010 12:35 pm

.. and never give up hope!
dont forget, you have been diagnosed in 3 A.Z. (after Zamboni) :)

alex
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Postby alexth14 » Wed Jan 13, 2010 1:39 pm

Thanks for the encouragment THISALEX, you guys have such great attitudes. ZTOOTSI, I have already talked to my GP about LDN but he's reluctant to give me perscription because I have yet to get a definite diagnosis. So I guess I should of asked this in the beginning but here we go......With having a negative brain MRI, two negative MRI of my entire spine and negative lumbar puncture......

Is it impossible for me to have MS, even though I continue to have problems that are getting worse?
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alexthe

Postby leetz » Wed Jan 13, 2010 1:59 pm

I AM NO DOCTOR...but have you been tested for lyme disease etc...
I was not diagnosed on MRI...I was diagnosed through lumbar puncture(ouch)..i would think if all those are neg. than just maybe it is something else???
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Lyon » Wed Jan 13, 2010 2:01 pm

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Last edited by Lyon on Mon Nov 21, 2011 8:58 pm, edited 1 time in total.
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Postby alexth14 » Wed Jan 13, 2010 4:22 pm

LEETZ I know what you mean about the spinal tap, not fun. It was also no help for me besides my protien being one point out of range everything was normal. I'm almost positive I have been tested for Lyme disease.

LYON I have heard that about MRIs. I had my first MRIs done on a 1.5 MRI. I had my second MRI of my spine on a 3.0 MRI(I hope I'm saying this right) to pick up anything the 1.5 missed but still nothing. The worse part of this is I'm starting to think my family believes this is all in my head with all the negative tests.
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Postby Katie41 » Wed Jan 13, 2010 5:52 pm

They are wrong! It's not all in your head, it's probably all in your neck! LOL :lol:
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