Treatment ? Maybe Quix?

[Sailorsong]

I had my follow up with the latest Neuro yesterday. He reported to me that both the test for Devics and the other thing he though might be my problem came back negative. This I am pretty happy to hear because at least Devics is a really nasty thing to have.


He then proceeded to say that brings us back to it being my Sjogren's syndrome attacking my spinal cord. While I do know that at least some of my symptoms are from the Sjogren's, it does not answer every things that is going on. Plus in all of the researching I have done on it I have never seen anything about it attacking the spinal cord.

After this he proceeded to talk about treatment as I had told him my biggest concern is that I am continuing to get worse and soon will not be able to take care of myself. His treatment plan is to put me on low dose steroids in the short term to reduce inflamation ( I have had a lot of new or worsening of symptoms since I saw him a month ago) and a immune suppression to stop the attacks on my spinal cord and to let it heal (his words).  I would also have to have frequent blood work ( every 3 months ) checks to look for damage to my liver. The let it heal set off alram bells for me he made it sound like it was 100% that the spinal cord will heal completely even after 20 years of symptoms. I also had some concerns about the treatment plan for two reasons.

First I already have bad tests results for my liver and kidneys which I mentioned to him. So he said they would do blood work in 6 weeks. I would have expected him to have the bloodwork done right away to at least get a baseline of the shape my liver and kidneys are in right now prior to any treatment.

Second I mentioned that I have frequent sinus infections (due to Sjogren's) so what would the immune suppression due to this. He told me it would only make the infections last a few days longer. A lot of the time when I get the sinus infections it is so bad that I am practically deaf for all purposes. It also usually takes 2 courses of antibiotics to clear it up.

This Neuro is concentrating on my spinal cord because my MRI showed a 1 1/2 inch length of my spinal cord in my neck narrows by 50%. This got me to wondering last night if maybe it narrows in this area because of numerous leison in the area over the last 20 years which have turned in black holes like they do in the brain. Maybe Quix know the answer to this. This is also why I very much doubt that this Neuro is right about my spinal cord healing 100%.

Dennis

[Sailorsong]

Thank you again for your comments. It makes me feel better about my own thought processes to have you confirm my concerns. I sure didn't want it to be that I was being paranoid about this.  :)

Sounds like you were finding the same things I was in my research where it is only case studies or descriptions of a few patients.

My Neuro has already given me the Rx's for the drugs I am suppose to take but I have already turned them over to the VA to be filled so I don't have them in front of me.

The steriod is prednisone if I remember correctly.
The immunosuppresive is Azathioprine I think. I am suppose to increase the dosage slowly over a 3 week period by taking 1 additional pill ( 1x, then 2x and finally 3x a day).

When I was doing research on Devic's I did notice that only 70% of people with it have a positive blood test for it. Maybe that is why the doctors are looking at SS and Devics? Maybe the SS might be a secordary vs primary in these cases? The one study I was reading about with SS and spinal cord envolvement  said the patients either had clinical Dx for devic's or a positive blood test.

So far the VA has not filled the Rx's and I have an appt with my PC on Dec 10th so I will wait until I see him before I start taking the meds. I have had several and consistantly bad LFTs in the past so my doctors at the VA do not allow me to take several pain meds so LFT doesn't get worse.  I'm not really sure of why the LFT has been bad in the past as it could be either drugs I have been taking or the SS as SS is know to attack the liver. If it is the SS attacking my liver then taking the drug may turn out to be a wash when it comes to my liver.

Dennis

[Quixotic1]

I did a quick search and found several references to an association between Devic's and SS.  These are not terribly frequent, but more refer to specific case studies or a description of a few patients.

http://www.springerlink.com/content/r65k8317845601m3/

http://ard.bmj.com/cgi/content/extract/67/5/730

http://www.medscape.com/viewarticle/446182_6

I can't really interpret these.  This is as far as I can go in discussing the topic.

My concerns about the explanations of the treatment plan, though, stand.  Be sure someone orders a chem panel before you start an immunosuppressive.  Should you start one?  It seems that this might stand a good chance of slowing your disease.  I don't doubt the wisdom of using one, I disagree that it won't have some risks.

Quix

[Quixotic1]

I was researching SS for someone else a couple years ago and it was clear that it is one of the MS mimics that is likely to cause spinal cord lesions.  So, this is a known thing.  I also noticed the one article linking SS to Devic's.

Though it sounds like your neuro is thinking hard about your disease process, I have the same feelings about his reassurances regarding the treatment.  First, it is MANDATORY in my mind to get baseline liver function tests BEFORE beginning treatment.  If he doesn't do it, please ask your primary care to do it for you.  If there is a blip upward on the treatment, you want to know if it is a tiny blip or a huge change.  This is especially true if you have had abnormal liver function in the past.  Remember, though, that a simple viral infection can cause abnormal LFTs.

Glibly saying that immune suppression treatment would only prolong the infections you get by a few days is naive.  Someone who is immune suppressed may develop ongoing infections of closed spaces like the sinuses that never clear.  Or it can cause the infecting organism to be replaced by an opportunistic infection like a fungus.  Opportunistic infections are those that the normal person easily fights off, but that a suppressed immune system may allow to take root.

Did he mention what kind of immune suppressive he is contemplating?

Quix

[Sailorsong]

Thanks for the google searches. The links are the only time I have seen a reference to spinal cord damage and Sjogren's.

In the one link it seemed like they were trying to link Sjogren's to Devic's and the treatment is the same as for Devic's ( which also corresponds to my Neuro's treatment plan). I think this gives me an idea of where the Neuro's mind set is. I wish there had been more in the articels about this.

I was also interested in your opinion about my concerns about the treatment plan.  

Dennis

[Quixotic1]

Sjogrens Syndrome can certainly cause myelopathy and be an exact mimic for MS that way in my reading.  

As for narrowing of the cord, yes localized atrophy can be the end result of lesions and scarring.

Google the following:

Sjogrens Syndrome spinal cord lesions

Sjogrens Syndrome Myelopathy

Quix

[Lulu54]

Hi Dennis,
I haven't a clue about your question here - just want to say I had read your update and I am feeling iffy about your neuro's direction.  I don't even know why - just say my instinct is saying something is amiss here.

I hope Q or someone comes through that can help with your question.

as always,
L

[Sailorsong]

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