M.S. and antiphospholipid_syndrome

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M.S. and antiphospholipid_syndrome

Postby koneall » Fri Sep 01, 2017 2:19 pm

The first problem was pain in one arm caused by a thromboembolic condition. That led to the MS diagnosis. But by then I was already on blood thinners. So what came first, the MS or the antiphospholipid_syndrome?
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Re: M.S. and antiphospholipid_syndrome

Postby Scott1 » Fri Sep 01, 2017 11:04 pm

Hi,

Only guessing but a quick read about your syndrome suggests to me that they are likely to be unrelated and you just had more bad luck than others.

Why did they make the jump to find MS?

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Re: M.S. and antiphospholipid_syndrome

Postby DivaQueenBee » Sat Sep 02, 2017 2:15 am

Hi,
The event that led me to the ER IN 2002 included an MRI where the radiologists asked me how long have I had MS. I was like "What!!!" and he stopped talking. The primary care doctor I had at the time dismissed this information and said based on her findings-which she was never really clear about- I had antiphospholipid syndrome. In 2005, a different doctor said I didn't have antiphospholipid syndrome and to stop taking the blood thinners. In 2008, my right leg turned into a kickstand and would not work. This ER visit resulted in the same information-It looks like MS. This time the spinal tap was done and further confirmation deeming Multiple Sclerosis. When we backtracked certain instances in my life as a teenager, my labor/delivery and weird instances that I never discussed with anyone, the neurologist supported the theory that I more than likely had MS as far back as late teens to early 20's. Like you, I am at a loss as well with the diagnosis of antiphospholipid syndrome when there were several indicators of MS.
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Re: M.S. and antiphospholipid_syndrome

Postby koneall » Sun Sep 03, 2017 8:20 am

I didn't save any of the abstracts but I read that MS and APL can have identical signs and may be alternate forms of the same condition. In my case I assume the docs didn't consider MS initially because of my age--60--and shoulder pain being the main symptom. They thought clots plugging the semi-circular canals explained the vertigo. But that changed once they did the MRI.

I was seen yesterday by a hematologist. He grilled me, seemingly wanting me to admit to having Lupus as a reason for the clotting problems. Both MS AND APL are considered auto-immune disorders.

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Re: M.S. and antiphospholipid_syndrome

Postby Scott1 » Sun Sep 03, 2017 2:43 pm

Hi,

So what happened when they treated the clots? Are you still experiencing problems or did they resolve? What are the issues you experience now?

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Re: M.S. and antiphospholipid_syndrome

Postby koneall » Mon Sep 04, 2017 8:17 am

There's still pain in the arm. Seems to get worse when running but not while walking. I assume the pain is catecholamine release from clots buried in the arm. Waiting for an ultrasound to prove or disprove the clot idea.

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Re: M.S. and antiphospholipid_syndrome

Postby Scott1 » Mon Sep 04, 2017 1:27 pm

Hi,

I think I would just follow the path of focusing on the arm and not worry about the signs of demylination. I'm almost the same age as you and experience has taught me to consider each step rather than just follow well meaning advice. If you deal with anti-phosolipid correctly then anything else you can choose to consider when it pops out as a possible symptom. Running at 60 is a good effort and I would not rush to treat an MS diagnosis if I were you.

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Re: M.S. and antiphospholipid_syndrome

Postby koneall » Tue Sep 05, 2017 7:18 am

Thanks, Good news perhaps that the two conditions are treated essentially the same way.

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Re: M.S. and antiphospholipid_syndrome

Postby koneall » Tue Sep 05, 2017 1:31 pm

So from reading Dr Google, 30% of MS cases also have APL antibodies. And no symptoms from that. So I haven't had any signs common to MS except vertigo. And the vertigo could be from the APL. I found articles discussing emboli lodging in the inner ear, leading to vertigo.
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Re: M.S. and antiphospholipid_syndrome

Postby Scott1 » Tue Sep 05, 2017 2:46 pm

Just watch your blood pressure when the vertigo is obvious.

Good luck in the future.
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Re: M.S. and antiphospholipid_syndrome

Postby koneall » Wed Sep 06, 2017 3:27 pm

Scott1 wrote:Just watch your blood pressure when the vertigo is obvious.

Good luck in the future.



What am I watching for? Elevated BP or subnormal BP? Mine tends to be low naturally.
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Re: M.S. and antiphospholipid_syndrome

Postby Scott1 » Thu Sep 07, 2017 12:06 am

Either. Both can make you woozy. When vertigo is obvious check where the pressure is and look for any correlations over time. Don't just assume the vertigo relates to either condition. It's much easier to deal with one issue at a time. The simple thing to do is check ubtil you are sure there is no apparent relationship. I have a very good friend with low blood pressure who regularly faints and when my blood pressure skyrockets from time to time (probably autonomic dysrelexia) I can also feel unwell. Different issues but a similar effect. There may be no relationship but its an easy thing to check and be sure.

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Re: M.S. and antiphospholipid_syndrome

Postby koneall » Fri Sep 22, 2017 8:01 am

I had an ultrasound on Monday and am still waiting for the doctor's review. If I don't get a call by afternoon I'll call him. The arm/shoulder pain is still there but not as severe as in the past. If the ultrasound shows no thromboembolic lesions then I guess I have to assume the pain is a sign of MS.

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Re: M.S. and antiphospholipid_syndrome

Postby koneall » Fri Sep 22, 2017 1:59 pm

I guess I'm learning that MS problems are never simple. I got a message from the doctor saying the ultrasound shows the neck veins are all clear. Meaning no signs of thrombosis. So...the arm pain must be MS related. I run every day at lunch time. And have had arm pain usually an hour into the run. So if it's not caused by thrombi is it a psychosomatic pain from MS lesions in the brain???
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Re: M.S. and antiphospholipid_syndrome

Postby Scott1 » Fri Sep 22, 2017 5:39 pm

It may not be MS either.

The repetitive swing of your arm whilst running may be irritating the joint.

Try to get a massage like this https://www.youtube.com/watch?v=hHKvdTkP5cU&t=8s.

If you can't get your arm into the chicken wing position then you may have a bit of frozen shoulder. They best way to treat that is hydro dilatation of the capsule which opens the gap between the head of the arm bone and the capsule. https://www.youtube.com/watch?v=Ab9GKQ-Ydlg Some people freak out with this but it's actually very fast and this video is an overkill in terms of treatment. Normally you just take your top off, lie down, they stick a needle in, you swear and the jobs done.

It will need persistence through massage to sort it out as the muscles will lock up to protect the shoulder. Also look at the scalene muscles. If they are tight it will pull the shoulder up toward the ears and that is tiring and painful.

Its far too easy to lump symptoms under an umbrella called MS. That just makes everything mysterious.

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