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Board: Autoimmune Disorders 03-08-2014, 05:02 AM
Replies: 5
Views: 493
Posted By blessedtobeme
Re: Anyone knowledgeable about scleroderma?

Hi Vee, thanks for responding.

I had UTIs all through my childhood. Tests never revealed anything out of the ordinary. Once I started bp meds at age 38 they stopped. I had a hysterectomy and...
Board: Autoimmune Disorders 03-05-2014, 06:00 AM
Replies: 5
Views: 493
Posted By blessedtobeme
Re: Anyone knowledgeable about scleroderma?

Thanks for responding, Vee. Hugs back to you.

I work for a large university and the insurance demands my doctors be from it's teaching hospital. I asked for a different Rheumy about a year ago as...
Board: Autoimmune Disorders 03-04-2014, 06:11 PM
Replies: 5
Views: 493
Posted By blessedtobeme
Anyone knowledgeable about scleroderma?

Hi,

I have been diagnosed with RA, Polymyositis, and Raynauds. While I am and have been so sick while taking the cellcept and prednisone, it is nothing compared to all the illnesses I have caught...
Board: Autoimmune Disorders 03-04-2014, 05:16 PM
Replies: 18
Views: 858
Posted By blessedtobeme
Re: New to Prednisone and a little worried

Confused,

Glad the prednisone is helping. I had terrible hot flashes to the point that I would have sweat dripping down my face in the middle of winter. My hair was wet constantly because of it. I...
Board: Multiple Sclerosis 10-31-2013, 01:19 PM
Replies: 7
Views: 720
Posted By blessedtobeme
Re: Another appointment... so frustrating !!!

Thanks, MSJayHawk.

Jenjen393, I also have many of those symptoms, tingling, numbness in fingers, but also have Raynauds, so not sure which that is attributed to.

I had a brain MRI recently, but...
Board: Multiple Sclerosis 10-31-2013, 10:54 AM
Replies: 7
Views: 720
Posted By blessedtobeme
Re: Another appointment... so frustrating !!!

MSJayhawk,

Hi there. Been several months since I was on. Originally, diagnosed with Polymyositis, however, some new symptoms are evolving somewhat slowly. Your comment about mimicries of MS caught...
Board: Myositis 02-28-2013, 10:12 AM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Re: Elevated CPK Level

I have had all the PFTs and thats what they told us were normal, nothing to worry about. They did decide I have sleep apnea and in fact, I thought all along it was my husband's snoring that kept me...
Board: Myositis 02-28-2013, 09:47 AM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Re: Elevated CPK Level

Thanks, Ladybud. It seems I live in a constant state of doubt. My test results sometimes, reflect definitive answers, then the next time, nothing as if it were imagined. I think even my son, who is a...
Board: Myositis 02-27-2013, 04:16 PM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Re: Elevated CPK Level

Ladybud, I agree wholeheartedly with Hopefloats36. Thank you for your responses.

I wonder if I'm not losing my mind sometimes. The pulmonologist told my husband and I all was well, they found no...
Board: Myositis 02-26-2013, 02:12 PM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Re: Elevated CPK Level

That must be why my doc was more concerned with how high the AST was compared to the ALT. I have been having the hepatic function tests every 2 weeks but now that the Imuran is stopped - it is going...
Board: Myositis 02-22-2013, 01:10 PM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Re: Elevated CPK Level

Well, I took 60mg of Prednisone for a couple months, then tapered down. Doc started me on Imuran but after 3 weeks my ALT had climbed to 101 so they put me back on Prednisone and off the Imuran....
Board: Myositis 02-22-2013, 01:04 PM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Re: Elevated CPK Level

Well, I took 60mg of Prednisone for a couple months, then tapered down. Doc started me on Imuran but after 3 weeks my ALT had climbed to 101 so they put me back on Prednisone and off the Imuran....
Board: Skin Problems 10-27-2012, 05:34 AM
Replies: 6
Views: 3,908
Posted By blessedtobeme
Re: Flaky/irritated skin around eyes.

Thanks, ShinyJ, it is worth a try.
Board: Myositis 10-25-2012, 08:29 AM
Replies: 10
Views: 5,120
Posted By blessedtobeme
Re: lupus myositis

This is excellent information, dear, thanks. I have Raynauds, badly in my feet which turn, white, purple and red. They changed me from my beta blocker to a calcium channeler, but my heart rate went...
Board: Myositis 10-25-2012, 04:53 AM
Replies: 10
Views: 5,120
Posted By blessedtobeme
Re: lupus myositis

Please excuse my ignorance. What is MCTD?
Board: Neuropathy 10-23-2012, 04:50 PM
Replies: 6
Views: 737
Posted By blessedtobeme
Re: New Member Question

Are your feet/toes cold? I had very similar symptoms in that my toes were cold even when the rest of me was warm. My feet ache and get pains in the ball of the foot, while my calves ached and...
Board: Neuropathy 10-23-2012, 04:48 PM
Replies: 6
Views: 737
Posted By blessedtobeme
Re: New Member Question

Are your feet/toes cold? I had very similar symptoms in that my toes were cold even when the rest of me was warm. My feet ache and get pains in the ball of the foot, while my calves ached and...
Board: Myositis 10-23-2012, 10:11 AM
Replies: 10
Views: 5,120
Posted By blessedtobeme
Re: lupus myositis

Ah, they are talking and open muscle biopsy for you. Different horse of course. Mine was done by needle biopsy, with the incision 1/2 inch. Used 2 steri strips to close and some strong clear tape...
Board: Myositis 10-22-2012, 05:40 PM
Replies: 10
Views: 5,120
Posted By blessedtobeme
Re: lupus myositis

Ladybud, I had a muscle biopsy 2 weeks ago and it wasn't that bad. I was sore for one day and fine after that. They gave me Tramadol for pain and I never needed it. It definately was what told my...
Board: Myositis 10-22-2012, 11:50 AM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Re: Elevated CPK Level

Hi Ladybud,

Doctor determined it is polymyositis. Started me on 60mg Prednisone. Referred me to a cardiologist and pulmonologist. My resting heart rate has been in the 130s/140s and she is...
Board: Myositis 10-22-2012, 11:45 AM
Replies: 16
Views: 5,727
Posted By blessedtobeme
Re: polymyositis

Hi Ldymom,

I hope that your CPK level was closer to normal and that you are feeling better.

I was just diagnosed today with PM and a tentative diagnosis of RA, in addition to Raynauds. They are...
Board: Arthritis 10-11-2012, 06:14 PM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Remicade Infusions

Hi Sherry,
No muscle biopsy results yet. However, the neuro had numerous blood tests done (12 vials). My KAPPA/LAMBDA, FREE, SERUM, kappa free light chain serum was elevated. I'm trying to get some...
Board: Arthritis 10-06-2012, 08:37 AM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

Hi Debnz,

I'm so sorry you are having such pain and I pray that your suffering won't be in vain.
Board: Arthritis 10-03-2012, 04:15 PM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

Thanks Debnz. I had the muscle biopsy and as a bonus, the doc did a nailfold check, too. Said they looked normal. Wasn't too bad. He said it would be 2 weeks for the results. Feel well, dear.
...
Board: Arthritis 09-28-2012, 04:58 AM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

I know that the last couple of doctors have been very concerned when they see how high my heart rate is, then they do tests and say nothing unusual. Then why am I always out of breath? Can't walk and...
Board: Arthritis 09-26-2012, 05:30 PM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

Congrats on quitting smoking. That is a very hard thing to do. Are you saying you have rebound headaches from overuse of headache meds? What does your bloodwork show? I firmly believe that some blood...
Board: Arthritis 09-24-2012, 04:53 PM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

*double post*
Board: Arthritis 09-24-2012, 04:52 PM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

When I think back to what I think started this, I had pneumonia back in January 2011, took me about 6 weeks to get over it. Two months later, I was hit by a horrible, debilitating fatigue and muscle...
Board: Arthritis 09-24-2012, 04:04 PM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

Wow, it is no wonder you feel like you are going crazy. So many meds in so little time. I understand the desire to relieve pain, however, I hate the fatigue even more. So you do have Raynauds, also?...
Board: Arthritis 09-24-2012, 09:56 AM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

Mimi,

Thanks for the support hug. How long did it take them to make an RA diagnosis? What kind of tests did they take into consideration? Did the pain come on quickly or slowly? Do you have...
Board: Arthritis 09-22-2012, 10:29 AM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

I can't believe how alike our symptoms are. I have an body extremity ultrasound that showed no erosion yet, but the synovial lining was thickened already, so the tech said it is early on in my toes....
Board: Arthritis 09-22-2012, 08:19 AM
Replies: 35
Rheumatoid Arthritis Foot pain
Views: 4,305
Posted By blessedtobeme
Re: Foot pain

Hi Mimi. I was just recently diagnosed with RA and I have had cramps in my arch for months. I have Raynauds, too, much worse in my feet than my hands. So I'm interested in whether it is indicative of...
Board: Lupus 09-21-2012, 06:36 AM
Replies: 12
Views: 1,908
Posted By blessedtobeme
Re: confused and no dx.

Oh no, I wonder if that is why my Rheumy still wants to do the muscle biopsy even though the ultrasound pretty much verified the RA? I was kind of hoping I could talk her out of it.

I do have the...
Board: Lupus 09-20-2012, 05:16 PM
Replies: 12
Views: 1,908
Posted By blessedtobeme
Re: confused and no dx.

So can I ask if it is possible to have RA, lupus, and myositis?
Board: Myositis 09-20-2012, 05:14 PM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Re: Elevated CPK Level

Thanks, Ladybud. Actually, the only thing I have even a remote diagnosis for is RA. I had an ultrasound yesterday that showed synovial thickness. My hands and toes are swollen and painful. I have a...
Board: Myositis 09-20-2012, 04:01 PM
Replies: 20
Views: 6,296
Posted By blessedtobeme
Elevated CPK Level

Do your muscles get weaker as your CPK level increases? Mine is only mildly elevated at 271 but has been steadily climbing for the past 18 months. My AST and ALT are also elevated.

Thanks for your...
Board: Lupus 09-20-2012, 03:38 PM
Replies: 12
Views: 1,908
Posted By blessedtobeme
Re: confused and no dx.

Peggys61, everything about autoimmune illness is frustrating in my humble opinion. I too, have been having tests for 2 years now and whatever it is that is making my CPK level and liver enzymes...
Board: Skin Problems 09-20-2012, 10:48 AM
Replies: 6
Views: 3,908
Posted By blessedtobeme
Re: Flaky/irritated skin around eyes.

Sross, I too have this issue and it is getting worse every day. I'm just being tested for autoimmune issues - RA and have confirmed Raynauds. it is my hope that the flaky, itch eyelids are not...
Board: Skin Problems 09-20-2012, 10:35 AM
Replies: 2
Views: 4,073
Posted By blessedtobeme
Re: Dry skin behind the ears

I had it too, but it got very itchy and crusty. It turned out to be a fungal infection. They gave me ketazonazol, which really helped.
Board: Arthritis 09-19-2012, 12:48 PM
Replies: 7
Rheumatoid Arthritis Trying to be patient
Views: 1,354
Posted By blessedtobeme
Re: Trying to be patient

The body extremity ultrasound that I had today did not show any erosion yet. However, the synovial lining was thickened. The technician told me that it indicated inflammation had occurred or was...
Board: Arthritis 09-18-2012, 04:07 PM
Replies: 7
Rheumatoid Arthritis Trying to be patient
Views: 1,354
Posted By blessedtobeme
Re: Trying to be patient

I'm just guessing, Moldova, because they just keep trying something else, to figure out what it might be. I am wondering if my increased heart rate could be the reason my voice sounds like a boy in...
Board: Raynaud's Syndrome 09-18-2012, 07:25 AM
Replies: 8
Views: 1,729
Posted By blessedtobeme
Re: Raynauds

Thanks, Luca. Yes, I am so blessed with my grandkids and children, I can never complain again about anything. I will relay your message to my son, when he comes home.

As I looked as results last...
Board: Raynaud's Syndrome 09-17-2012, 03:31 PM
Replies: 8
Views: 1,729
Posted By blessedtobeme
Re: Raynauds

Well, it is not likely that my stress will subside anytime soon. I have a boy who is an F-16 pilot in Afghanistan, 29 grandkids, I work full-time as the breadwinner and now all this. I need to work 4...
Board: Raynaud's Syndrome 09-17-2012, 02:56 PM
Replies: 8
Views: 1,729
Posted By blessedtobeme
Re: Raynauds

Well, it is not likely that my stress will subside anytime soon. I have a boy who is an F-16 pilot in Afghanistan, 29 grandkids, I work full-time as the breadwinner and now all this. I need to work 4...
Board: Raynaud's Syndrome 09-17-2012, 10:17 AM
Replies: 2
Views: 1,872
Posted By blessedtobeme
Re: toes feel like will explode

I have only been diagnosed for 10 months, but yes, when per fusion occurs, blood returning to the toes, it feels like they are going to burst. They are hot and shiny too. Is this how yours are?
Board: Arthritis 09-17-2012, 10:08 AM
Replies: 7
Rheumatoid Arthritis Trying to be patient
Views: 1,354
Posted By blessedtobeme
Re: Trying to be patient

I had an endoscopy this summer and they said my throat looked ok on the way down. However, I think maybe the problem is related to my heart rate. Sounds crazy, eh?

This weekend they changed my bp...
Board: Raynaud's Syndrome 09-17-2012, 10:00 AM
Replies: 8
Views: 1,729
Posted By blessedtobeme
Re: Raynauds

Thanks for responding. I have been diagnosed for about 10 months. I have always had cold feet and hands, with the toes and finger being painful in the cold, Michigan winters. Last January I got...
Board: Arthritis 09-13-2012, 04:44 PM
Replies: 7
Rheumatoid Arthritis Trying to be patient
Views: 1,354
Posted By blessedtobeme
Re: Trying to be patient

Thank you for your response, Moldova. I wondered if it could be caused by GERD, but I take Omeprazole morning and night, so I figured it was just another in a long line of new symptoms. Appointment...
Board: Raynaud's Syndrome 09-12-2012, 09:00 AM
Replies: 8
Views: 1,729
Posted By blessedtobeme
Raynauds

I am new to posting but have been reading for many months.

How is it possible to have sweat running down your back and feeling like you could naturally combust but your hands and feet be freezing...
Board: Arthritis 09-11-2012, 06:06 PM
Replies: 7
Rheumatoid Arthritis Trying to be patient
Views: 1,354
Posted By blessedtobeme
Trying to be patient

Hi all,
I need your expertise and experience to help me be patient. As a fairly active 58 year old, grandmother of 29, I have always been busy. I work full time and have grandchildren over...
Showing results 1 to 50 of 50

 








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