New update on husband/ waste of time

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

New update on husband/ waste of time

Postby whyRwehere » Tue Mar 09, 2010 10:47 am

The Backstory: My husband had a phlebographie with angioplasty done in Paris. The Interventional Radiologist wanted to write a paper and consulted with very important neurologists at a major hospital in Paris. They said to her at the time, that they would like to see my husband as they didn't believe he had MS. We finally had the appointment.
The neurologist looked at the MRIs, said yes that is MS, although not very active. I explained why we were seeing her....she said they didn't say that they thought my husband din't have MS, but that they would agree to measure whether the procedure made a difference.....there was no indication that she was very interested in this case at all, or that we would see her again. She suggested that we continue seeing a neurologist and that it was not the opinion of the neurology staff there, that this treatment could help in any way....that they had done this 30 years ago in France and that it had not shown any benefit. We should just take drugs for the symptoms, do physio, and wait for a drug for progressives to come out in 2 years time.
My husband wanted to know why he was there....we know all that she shared, gained nothing from the visit, but excessive amounts of stress...have you ever driven in Paris, ugh....and you can't drive into the hospital complex...it was a Nightmare. And they asked to see my husband. WHY?!
I think I will never make another neurologist appointment ever....just a waste of time.
Just by the by, we had a little discussion about lesions.....you can have MS and no lesions, you can have lesions and have MS, but the lesions don't really correlate with the disability....basically, we are trying to find out from her how do they know it is MS, if they have no definite test of MS, and that is the crux of the matter...nothing is definite, so how can they be definite that they know what he is ill with and how best to help him? Jaded neuros...jaded patients.
Good news: Dr F. did a doppler yesterday and the left jugular is working perfectly still, AND there were 5 other doctors observing him while he worked!!! Thank God for them, they give me hope.
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Postby ozarkcanoer » Tue Mar 09, 2010 11:07 am

Hi,

I'm so sorry for the negative visit with the neuros in Paris. The reality is that many neuros are biased toward the neurodegenerative and autoimmune aspects of MS. It always surprises me that neuros don't really have any answers for us but they are willing to tell us what THEY THINK MS isn't.

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Re: New update on husband/ waste of time

Postby ikulo » Tue Mar 09, 2010 1:03 pm

whyRwehere wrote:you can have MS and no lesions


I don't think this is correct. Multiple Sclerosis means multiple scars, scars are lesions, so multiple sclerosis means multiple lesions. In fact, i believe have more than one lesion within the brain or spine is one of the factors necessary for a MS diagnosis.
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Postby whyRwehere » Tue Mar 09, 2010 1:11 pm

Well, I agree with you....I think they are not the specialists they call themselves....I am all for the non-specialist....it's more truthful.
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Re: New update on husband/ waste of time

Postby cheerleader » Tue Mar 09, 2010 1:34 pm

whyRwehere wrote:Just by the by, we had a little discussion about lesions.....you can have MS and no lesions, you can have lesions and have MS, but the lesions don't really correlate with the disability....basically, we are trying to find out from her how do they know it is MS, if they have no definite test of MS, and that is the crux of the matter...nothing is definite, so how can they be definite that they know what he is ill with and how best to help him? Jaded neuros...jaded patients.
Good news: Dr F. did a doppler yesterday and the left jugular is working perfectly still, AND there were 5 other doctors observing him while he worked!!! Thank God for them, they give me hope.


Hi Why-
So sorry you had to deal with Parisian traffic for the neuro visit (which they initiated!?)...what a disappointment. Sounds like the visit to Dr. Franceschi made the trip worthwhile. Glad your hubby's left jugular is still open and flowing. Also glad other doctors were observing the master. He is a true specialist....

Your story reminds me of Marc (Wheelchair Kamikaze) who has been told on and off it is MS/it isn't MS (he has one lesion/lots of disability) He'll have angioplasty tomorrow with a vascular doc (like Dr. F) who understands the importance of venous return. We'll see what that turns up.
Hang in there, and thanks again for sharing the good, bad and ugly with us all-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby whyRwehere » Tue Mar 09, 2010 1:56 pm

Hi Cheer,
Yes, I see too many similarities to Marc...so I am keeping my eye on how that pans out.
I wouldn't have been so bothered, but YES, the neurologists asked to see my husband and it was so pointless...like torture. Certainly learned nothing new...as usual, and it was a very short visit...none of the usual stand on one foot and touch your nose stuff.
Terrible experience.
Why
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Re: New update on husband/ waste of time

Postby AlmostClever » Tue Mar 09, 2010 2:35 pm

whyRwehere wrote: We should just take drugs for the symptoms, do physio, and wait for a drug for progressives to come out in 2 years time.
My husband wanted to know why he was there....we know all that she shared, gained nothing from the visit, but excessive amounts of stress...


i think we've uncovered a new MS symptom! I feel like that EVERY time I go downtown to see the Wizard! All he gives me is a fist-full of renewed scripts! Small reward...
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby whyRwehere » Tue Mar 09, 2010 3:15 pm

Yes, very like the wizard!
By the way...on the arsep forum (in French), there were some 130 pages discussing ccsvi, which have disappeared. Fred? Jean? RRider? What happened?
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Re: New update on husband/ waste of time

Postby Thomas » Tue Mar 09, 2010 3:27 pm

ikulo wrote:
whyRwehere wrote:you can have MS and no lesions


I don't think this is correct. Multiple Sclerosis means multiple scars, scars are lesions, so multiple sclerosis means multiple lesions. In fact, i believe have more than one lesion within the brain or spine is one of the factors necessary for a MS diagnosis.


Yes you would think that when the diagnosis is Multiple Sclerosis you would have multiple lesions! But the nmss says: "It should be remembered, however, that approximately 5% of patients with clinically definite MS do not show lesions on MRI at the time of diagnosis." http://bit.ly/9LNHtW

They don't say in this article, but I would like to know if it is possible to have MS for many years without lesions.
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Postby tlynn » Tue Mar 09, 2010 8:11 pm

You would think that the neuros when you are first diagnosed would run a baseline doppler even if they do not plan on doing anything. Maybe this is something people should do on their own.
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Postby Brainteaser » Tue Mar 09, 2010 10:50 pm

Hi Why,

CCSVI has come a long way in a short time. Six months ago, I couldn't get any action down here in Melbourne - I felt like a 'shag on a rock'.

Now however, just go to the Aussie thread and see the brilliant work being done by some of the MS Young Turks, spreading the word amongst the medical establishment here and making great progress - absolutely fantastic!

Why - you are a courageous woman. Hang in there. Please don't worry about any wimpy neurologist. The worm will turn!

Phil
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Postby whyRwehere » Wed Mar 10, 2010 12:53 am

Thanks Phil,
I am less worried than annoyed!! I sense the French neurologists are as dug in as those at Stanford. Personally, I don't feel they are necessary to treatment, and I do not understand why they get paid for their consultations. I'm sure there are worthy, nice neurologists...I think I have even met two in the last 8 years, but in general, I have been disappointed again and again at theses appointments. This lady's arguments, for my husband to continue being followed by a neurologist, were not very persuasive.
I am hoping more will develop with vein transfers, stem cells, and a general understanding of this vascular problem(connection or cause). I just hope my husband can hold on. He really should be in a chair or scooter now, but is at the stage where if he can possibly go without he would rather. I said to the doctor yesterday, that if it were her, or the other neurologists, who were in my husband's shoes, they would be looking for anything to help, no doubt about it. :evil:
In the meantime, I continue to spread the links to anyone who is interested. I only wish my French were better, so that I could be more active here. I think a demonstration of pwms and their carers would be very effective in getting the importance of action across...I would turn up.
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Postby jean-la-grenouille » Wed Mar 10, 2010 5:38 am

Hi everybody !

just a reply concerning the french forum arsep. We were surprised to see a few days ago, that the pages concerning CCSVI had been deleted.
I don't know the reason why. Some of us are very angry and wrote a letter to have some explanations. Maybe the french doctor at ARSEP don't really enjoy the forum to speak too much about CCSVI, but maybe it's something unrelated (maybe technical problem due to the huge amount of pages about CCSVI).

I plan to see dr Greiner in Paris soon. She asked me to bring a venous and cerebral MRI. I may have a venography done. We'll discuss the possibility to perform a ballon angioplasty. (I have already seen Dr Franceschi, he found i have my jugular veins blocked).

This morning, i had a consultation with my neurologist (she's so cute). She advised me to go forward with Dr Franceschi and Dr Greiner.
But she can not do anything, because CCSVI is a vascular condition.

@ bientôt ;-)
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Postby whyRwehere » Wed Mar 10, 2010 5:53 am

Hi Jean,
Where is your neuro...I think you are in Lyon and not Paris? Pity, if so...I would have liked a neuro like that!!
That is absurd about the arsep forum deleting the thread. I wonder if there is a way to reinstate everything.
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Postby Algis » Wed Mar 10, 2010 6:14 am

Good luck Jean :)

(*)Toujours les mêmes qu'ont des Neuros agréables à regarder :P Ici ils ont tous des poireaux sur le nez et des pieds plats... Houahahahahahaha
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