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Living With Sjogren's / Re: Very high B12 levels anyone?
« Last post by MAT51 on Today at 12:40:07 AM »
Thanks Anita. I will post this on neuro talk for Mrs D’s comment. My rheum and GP don’t seem concerned - probably assume I’m supplementing as I was for a while. But I’m not sure it is always okay to have high levels - here is one of many links I found on the subject - I hope it’s admissible to post here: https://academic.oup.com/qjmed/article/106/6/505/1538806

My other levels are all good presently apart from low % saturation of transferrin which is low ie under range. I looked this up and it seems that it’s just another indicator of autoimmune inflammation.
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Living With Sjogren's / Re: Choking
« Last post by irish on December 17, 2017, 07:46:18 PM »
I have choked quite a few times plus I am an old retired RN who has done the Heimlich a few times on patients and on my 12 year old son who probably would have died had I not done it. I had just read about the maneuver in the REaders Digest and little did I know AIA would use it within a week to save my son.

It is scary to choke and I am going to mention some things to keep in mind.
When you first start to choke do not take a deep breath without thinking. Doing this can suck the food further into the airway where it could get stuck and obstruct the airway totally. Try to take a very slight breath to see if you can move air into your lungs. Keep the breaths small and try to cough the food out a few times. Remember that our cough reflex is very good and one has to give it a chance.

The other thing to do is to check a clock to see what time it is so that you can keep track of the minutes you are having trouble. This is important to do when you are with someone else when they choke.

If you can't cough the food up then place your fist under your diaphragm above your belly buttom where the ribs make a vee. Push in and up hard as you want to have the thrust move air from the lungs to help expel the food, I have used the back of a chair but the thing I like the best is kneeling at the side of the bathtub. You can push your belly into the side of the tub with your head hanging down into the tub. This use of gravity helps.

If you are home alone don't be afraid to go out into the street as you could arouse neighbors attention or the attention of cars going by. Also, having a phone that dials 911 easily that is worth doing also.

I choked one week after my spinal fusion. I was down in the basement bedroom watching TV and took my pills with water and a straw. The incision from surgery caused swelling up into the bottom of the right side of my mouth ....plus sjogrens and myasthenia I am high risk for choking. This one was weird. I could barely breath but able to breath a little air in. I could feel the pills in my airway/esophagus or both but could not get them down even with a little tint swallow of water. I knew I could not make it upstairs to wake my sleeping son. I did Heimlich, coughed breathed very little....just enough to no pass out.

As time progressed I could feel things moving some as the pills dissolved and moved some. I felt comfortable enough staying where I was cause I surgical pain but no pain meds in me. I just keep moving around and ponding chest, Heimlich, etc and slowly my airway started to open. Coughed up some dissolved pills etc and had a bunch dissolved and give me reflux. I coughed 2 1/2 hours to get it cleared out. Every time we choke it is different and we have to be conscious of our every move. Hope some of this helps. Irish
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Living With Sjogren's / Re: Very high B12 levels anyone?
« Last post by anita on December 17, 2017, 06:58:21 PM »
I would suggest you ask this question on Neurotalk...MrsD.  She is the resident expert on Vitamin B12.  If anyone would know, she would.

I do know that a high (even very high) number isn't bad.  But as for what might cause it to be that high without supplementing, I'm not sure.  I also know that your nerves (especially, small fibers) benefit from a higher B12 level.
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Living With Sjogren's / Choking
« Last post by Deb 27 on December 17, 2017, 05:16:05 PM »
So tonight at supper, I almost choked on a piece of steak. I went to swallow and it got stuck pretty high up right above my windpipe. It was so very scary. It was like my swallowing mechanism wasn't working. Luckily, I kept trying to swallow and it went down.  I've had food get stuck much further down before where it didn't affect my breathing. This was extremely scary. I wan t to make sure it never happens again.

I am not taking evoxac yet. I've resisted because I am afraid of the side effects   I have asthma but after this incident I am going to have to do it.

I had some trouble with GERD today. I wonder if that played a role. I am just grateful that I am  awake and breathing. I think I was close to passing out. Any advice for me to keep this from happening again?
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Living With Sjogren's / about vertigos
« Last post by bluegardenia on December 17, 2017, 04:17:24 PM »
i had an awful episode of vertigos 20 days ago. i already had some, lets say one every year or every two or three years since 40 years, much before i knew i had sjogren that arrived in 2012. ususally it lasts 6-8 hours and leave me dizzy for a couple of days. i had labirintitis when i was a teen and all the ear and nose doctors rthat i saw never gave much attention to that. in fact i have lots of friends with the same.
this time, it started slowly in the morning but i could go out drive etc; i had a strange sensation in my eyes like if i  could see worse. i took the pill that i usually take  for vertigos, something that rules the pressure in ears ,but it did not help.  at midnight while i was going to sleep, vertigos started at their best, the room was turning so quickly that i did not have the time to take another pill , i could not even turn my eyes and i layed half dressed on my bed . i could not open my eyes but i noticed  i could open one and i had my phone near me  so after two hours i called emergency.i had to call my neighbour who has my key to open the door, i ws in panic and blood pressure was very high. they helped me to take the pills, i was more quite, i could make pipi so at five  in the morning they went away and i was better.
 the day after things were fine and  i forgot everything but after four or five days i started to be dizzy and unsecure again and im still like that after 20 days. i went to the doctor, he wanted an mri that i did and that do not show anything .
 the new thing is that i have tinnitus.
ill make tests for meniere after christmas.
 my question is; anybody here with vertigo had a  sure diagnosis of this? and whats the relation with sjogren explained by a doctor? and which meds do you take to stop the horrible dizziness? and uncertainty?
 thanks
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Living With Sjogren's / Re: How numb can we become?
« Last post by irish on December 17, 2017, 03:51:29 PM »
I am just going to mention that I had really bad outer hip pain with pain radiating into the groin. Nothing was referred to regarding it being from my cervical spine....which I am betting it is because I had MRI lumbar with and without contrast without any problems found. However, I have had a couple of docs tell me that that referred pain into the groin is common in arthritis. Just for your info. Irish
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Living With Sjogren's / Re: Angular cheilitis
« Last post by MAT51 on December 17, 2017, 11:33:32 AM »
Oddly I haven’t suffered from this much until recently. Although I attended a talk by a
Sjögren’s rheumatologist who showed slides of it as part of the common skin manifestations of SS. I felt relieved not to have this but then suddenly one corner of my mouth suddenly developed a crack out of the blue. I decided on a nappy cream having first rubbed the tiniest bit of Tea Tree oil on the affected area. Within a few days it disappeared. I don’t know if this was just lucky but I’ve just done the same with extremely itchy inner ears and this too has cleared. I’m in the UK so this may not be very useful but the brand of nappy cream I use is Sudocreme - a family favourite. 
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Living With Sjogren's / Very high B12 levels anyone?
« Last post by MAT51 on December 17, 2017, 11:28:02 AM »
Hi All. Not unduly concerned because all my other bloods are good but I recently requested my B12, Folate and Ferritin plus blood glucose all be checked due to new additional pins and needles the length of both arms on top of going numb everywhere, including face. I’m hypothyroid but supposedly this is well controlled with Levothyroxine (Synthroid) which I’ve been on varying doses of for years.

When my SFN first started it was suggested to me on a thyroid community that I might have pernicious anemia. I was on Methotrexate, folic acid and Plaquenil at the time so got my homocysteine and MMA levels tested - all within range as was B12 (444). But my vitamin D levels were low so my GP agreed to prescribe me AdCal D3. I did some research and decided that there was no harm to be had by taking a B12 sublingually daily.

Cut to five years on and each time my B12 levels have been checked they have been progressively higher. Now they are at 1,478 which is pretty high. But I haven’t been taking B12 on a regular basis for a few years?

Can anyone advise on the possible significance of this please?
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Living With Sjogren's / Re: How numb can we become?
« Last post by MAT51 on December 17, 2017, 11:15:14 AM »
Elaine I appear not to have replied to your very helpful reply. I am guessing that the younger we are when our Sjögren’s symptoms or general autoimmunity begin, the more damage we are likely to sustain in our older years. Although the Sjögren’s specialist who’s ideas I sought recently, told me that a large scale trial had shown that Sjögren’s doesn’t actually progress in most cases? I wish I’d queried this more now but I think she meant the classic sicca rather than the systemic side of things.

I do hope your hip problem has resolved or is being dealt with. I have episodes of spectacular hip pain in my outer side and down in my left groin but fortunately they usually resolve. I do have confirmed arthritis in my hips and lumbar region and am realistic enough to know that, if it can get bad at 53 then it’s only going to be something that warrants surgery or other by my 60s or 70s. But as my relatives have all dropped dead before wear and tear has had a chance to warrant hip or other joint replacements I tend to focus on avoiding strokes and heart failure which are what took most of them. I’m a pragmatist through and through but I admit the numbness and pins and needles and autonomic dysfunction do really bring me low sometimes. X
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Living With Sjogren's / Re: Spat the dummy - leaving work
« Last post by Lotus1 on December 16, 2017, 05:36:07 PM »
Jazzlover, it means throwing a tantrum :)

Lotus1
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