Cleveland Clinic for 3rd opinion

[byyygrace]

My appointment has been set for October 29th at the Cleveland Clinic. I was amazed how quickly they got me in! I got some personal days cleared at work but my husband is still trying to juggle his schedule. The logistics of it all makes my head hurt! I may end up just flying by myself so I don't have to accommodate the husband or the dog. Lol.

I guess my ANA is now positive. The report says "titer says >1:60. (from what I read it's not terribly high). It had been negative before. Is it common to have a positive ANA with MS?

I guess I'm trying to sort out if I have something other than MS or I have MS(like my previous diagnosis) and something else. Any thoughts, please?

Colin

[karryon55]

Hey Colin,

That sounds really strange & a bit suspicious that they have said a positive ANA & negative X Ray & Urine test when you never had the X Ray or urine test. For your piece of mind get your PCP to check the ANA again. It can go up & down so unless you consistently have a high titre I wouldn't worry.

It's just really strange & a bit negligent to tell you those things & then say oh sorry disregard the X Ray & Urine info our mistake. It sound like the whole place is in chaos.

Thank goodness you are out of there because I would be worried if you had to rely on the big cheese all the time. Hmmmm

I have everything crossed that your new Neuro is kind, supportive & proactive. My Neuro is so lovely I wish I could post him over to you. He's one of the rare really kind Neuro's & currently has 12 months wait list.

Good luck for the 29th October. My thoughts will be with you on that day.

Take care

Karry.

[byyygrace]

Hey Karry,

Yes, it is the 1st positive ANA. I had never heard of Hughes Syndrome. I looked it up and neither this or the other conditions really fit what's going on with me. I just so want to feel better!

I'm a little skeptical on the ANA result. The Rat's nurse emailed me the results saying my ANA was positive suggestive of a collagen vascular disorder, my chest xray showed no signs of sacardosis(sp?), and my urine test was negative.

I emailed back and said I thought she had me confused with someone else. I did not have a chest xray or a urine test! She replied that she was so sorry and to please disregard the info on the xray and urine but that the ANA was correct.

We should have a reality tv show  and call it "Rat Trap". We could feature a different scrawny rat every week...is cheddar better???

Blessings,
Colin

[karryon55]

Hi Colin,

Is this the first positive ANA you have had? Probably wise to keep an eye on that. I know this may have been mentioned before but have you had the 3 blood tests for APS / Hughes Syndrome? It's just often only 1 or 2 of the tests are done & it's just not adequate.

If you are interested have a look at the "Hughes Foundation" it's in the UK. APS has now been named after Prof. Hughes. If you have a look at the symptoms it explains about how it can mirror MS in symptomology. There is also a Seronegative form of this. Which means your blood markers are negative but you have otherwise fitted the criteria for Hughes Syndrome.

There are many conditions that can have ANA involved. Just mention it to the Neuro. I'm glad you got an early appt. Fingers crossed this one is "the" Neuro for you. Just carry some cheddar in your bag just in case...lol ;-)

Let us know how it goes.

Take care

Karry.