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Too "young" to have circulation issues?


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#1 msjess

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Posted 07 July 2013 - 11:12 AM

It's been a couple weeks since my last update. In the meantime, I have developed phlebitis in my right leg. So I was sent to a vascular specialist. When I tried to discuss with her the burning/itching fingers/palms and soles of my feet, which has been relentless for a month now, she dismissed my idea that it was circulation related. I feel in my gut that it is either a form of Raynaud's that I haven't experienced before, or possibly chilblains or even erythromelalgia.

 

She took one peek at my fingers and dismissed me, saying, "People your age don't have circulation problems." I am 39, and actually have experienced what I believe to be Raynaud's since I was a teenager. My blood vessels in hands and feet swell up when I am experiencing this itching/burning in my hands and feet, and they tingle/prickle. I have really no sign of a rash, but the skin does turn bright red occasionally.

 

I did test positive ANA last year, including positive anti-centromere which my rheumatologist surmised was not interesting at all or worth following up. I have struggled a year with strange health problems, starting with pleuritis last summer, followed with increased stomach pains, and increasing acne/possibly hormonal issues. I am in hyperthyroid status, up from Hashimoto's thyroiditis, where I am typically hypothyroid. Mouth sores. Ear infections.

 

Now my hands are swollen all the time and incredibly stiff in the morning and they have had me crying because it hurts to grip pretty much anything. I also feel my hands are a lot weaker than they should be. My phlebitis isn't going away, and I have to wear compression socks for six weeks before they will consider anything surgically. I just wonder if I am having a form of vasculitis or possibly bad Raynaud's syndrome. But nobody has provided any answers yet - and I've seen my primary care physician three times over this, a dermatologist and now this vascular doctor.

 

I still can't believe she said that I am too young to have circulation problems. Especially since I am obviously having them, and it's showing up as phlebitis??

 

Oh, and to top it all off, the vascular lady told me to, "Stop reading so much," and when I was slightly upset she wouldn't consider helping me with my hands, I did cry. She then told me, "Most people are happy when they know something isn't wrong." ? Gah. It's not that I want to be sick. It's that I know in my gut something isn't right here and nobody is helping me!! I left the appointment feeling very frustrated, still.

 

Meanwhile I still have not heard from the rheumatologist that supposedly got my referral - and I imagine he won't see me either. I already found out my former rheumatologist sent a letter to my doctor saying he won't see me again.



#2 amberjolie

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Posted 07 July 2013 - 03:02 PM

I can somewhat relate.  The first rheumatologist I saw didn't do much for me, and after I brought up new symptoms I was noticing for about three appointments in a row, he said that he thought I was too obsessed with my health and that I just needed to accept the fact that I had issues (which at the time he felt was just Sjogren's, even though I was trying to show him my dropped capilliaries in my fingernail beds, and my skin changes). 

 

My new rhematologist is awesome.  She was incredibly surprised that even though I got digital ulcers back in 2009, I wasn't diagnosed with scleroderma until 2011 (the first two years were with that other rheumatologist).

 

Anyways, I know you're afraid no one else will see you, but keep trying.  Maybe you'll find someone who will actually listen to you.  There are some doctors out there who will, it's just a matter of finding them.

 

I can't believe the doc said, "Most people are happy to find out there's nothing wrong".  If there was nothing wrong, why would you be suffering all those things?!  You KNOW something's wrong, you don't have to be told that.  You just have to be told WHAT is wrong, which is what she's not helping you with.

 

I hope you're able to find some answers!



#3 judyt

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Posted 07 July 2013 - 04:02 PM

I can sympathise with you too, it took what I reckon to be 37 or so years for me to get a diagnosis, then when I look back I think I had my first GI episode at least 10 years earlier than the onset of Raynaud's at 22.

 

I think my delay was probably caused by the fact that I have virtually no skin involvement apart from the ends of my fingers from the first knuckle to the tips.   My Raynaud's was identified fairly early on but the cuticle disfigurement was put down to a yeast infection.  Tri-cyclic antibiotics didn't make a bit of difference but still no other reason was suggested.

 

It is slightly ironic that for me the diagnosis (Eureka moment) came when I was sent to a Vascular Clinic at the hospital.   I had dreadful varicose veins from about 22 or 23 years in spite of no pregnancies and never having a job which entailed standing at all.   I was a Secretary and Payroll person so had the luxury of a nice office and comfortable chair most of the time.

 

I knew for all those years that something was wrong, just as for you.   I had an unexplained large bowel prolapse (put down to 'just one of those things that sometimes happens').   My oesophagus became so restricted that I had to have it dilated, I was so sensitive to the cold that I was a nuisance to everybody, always complaining about my cold fingers winter and summer.   Having the superficial veins on my legs stripped didn't help in more than a cosmetic way.   The deep veins continued to be incompetent and stasis dermatitis followed by ulcers took over as my next problem.

 

The ulcer problem was what prompted my referral to the vascular clinic and I was so lucky that the Registrar I saw that day thought he knew straight away what my list of symptoms meant.   Right after telling me what he thought he started to back down and say "well maybe not . . . . .'  but I knew immediately that he was right.   I told my GP and she arranged for the appropriate blood tests, but before that could happen I has hospitalised with a GI bleed and it was all downhill from there (just kidding).  

 

But in terms of a diagnosis and reasons for all these weird things it was a huge relief to know what it was.   It took a while to get my head around the whole thing and to accept that I was not going necessarily to have a shortened life.   So here I am, pushing 70 and still going.   Over the intervening years I have discovered I have Sjogren's and PBC as well but I am OK.   Oh, yes and I am forgetting Rheumatic Heart Disease!!   I had a valve repair on a faulty Mitral Valve which was giving me Pulmonary Hypertension for a couple of years, but I don't even see a Cardiologist any more (perhaps I should, I don't know).

 

Hang in there, don't let rude and unfeeling consultants get to you.   As Amberjolie says keep trying , the right person will come along one day.

 

Best wishes

Judyt



#4 Amanda Thorpe

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Posted 08 July 2013 - 04:07 AM

Hello Msjess

 

In my opinion some of what you have been told is rubbish, I was diagnosed with systemic scleroderma and Raynaud's at the age of 39 so yes you can have a circulation problems at the age of 39!

 

Raynaud's is a vascular disorder, it causes the blood vessels to go into extreme spasms in response to stress or cold.

 

Erythromelalgia is also a vascular disease, the blood vessels over dilate causing the blood to rush to the affected area. I had erythromelalgia during my first years with scleroderma, see my post about it which I describe my symptoms as being skin that was bright red, burning, hot and itching.

 

I would suggest that you think about getting a referral to a scleroderma expert with your symptoms and blood work I hope this will not be a problem. Do not waste anymore time with doctors who think that circulatory issues only affect people of a certain age and do not understand that people with symptoms of an unknown cause want a diagnosis of anything more than they want the unknown, you can't fight what you don't know!

 

I hope this helps and take care.


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#5 msjess

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Posted 08 July 2013 - 05:46 AM

Thank you everyone. My dermatologist took a look at my hands, and while he did suspect lupus, he told me, "I don't think you have scleroderma, although you may have it in 5 years or so."

 

I am at a loss who to bring this up to. My primary knows nothing about autoimmune stuff, and just refers me out every time I go in to see her. The local rheumatologists are few (2 in my region of Maine) and all of my in-state options are exhausted I think. I am on Maine healthcare, so I don't believe they will pay for an out-of-state referral? I will investigate that option, if the other local rheumy in fact tells my doctor he won't see me.

 

It's funny how this comes and goes. My hands and feet have been good past 24 hours or so, at least not burning pain, just mildly itchy and sore/as if it's in the muscles or joints of my hands. It's cooler today, raining, and not the hot/humid temps it has been. Do your symptoms fluctuate with the weather?? Is it insane to think there is a connection?

 

The only other idea I have at this time is that it's related to hypocalcemia, as a few of my recent labs have shown low serum calcium levels. I have read a bit about hypocalcemia causing burning pain in hands/feet. I don't know if hypocalcemia runs with scleroderma too or if it's just a "me" thing that I need to pin down. Maybe, perhaps, this all can boil down to my thyroid disease too.



#6 Joelf

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Posted 08 July 2013 - 11:29 AM

Hi Msjess,

 

I must admit that my joint pain does seem to vary a bit with the weather; unfortunately the UK is a very wet climate (although ironically at the moment we're in the middle of a heatwave! :emoticons-yes: ) I have noticed that my joints seem to be a little better, although whether that's due to the sunny, warm weather, I wouldn't like to say.

 

I've included a link for you on Hypocalcemia and according to the link, it is suggested that hypocalcaemia can present symptoms of paraesthesia (burning and tingling.)  I do feel, however, that if possible you should try to get a referral to a Scleroderma expert, as Amanda has suggested, as sadly many rheumatologists do not have the knowledge and expertise to deal with such a complex disease.

 

Kind regards,


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#7 Shelley Ensz

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Posted 08 July 2013 - 07:04 PM

Hi Msjess,

 

What has your doctor done to troubleshoot or treat your hypocalcemia, so far?

 

And, have you ever requested a copy of all your medical records?  If not, I would highly recommend that you request records from all the doctors you have seen for the past few years. It can be very enlightening to see what your doctors' thoughts are and it might help you identify ways in which to improve your medical care.

 

Most clinics don't charge for copies of records if you say you are getting them to prepare for an appointment with a specialist. And of course, that is likely exactly what you will use them for, after you've had a chance to study them, right?

 

Many of us have been anywhere from surprised, confused, to downright shocked to read our medical records. It might also give you an idea of which doctor was on the right track, to return to them, and which doctors are barking up the wrong tree, to avoid them in the future. Anyway, it can be a vital help in figuring out how to turn your medical care around.

 

:emoticons-group-hug:


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#8 Jac

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Posted 08 July 2013 - 10:57 PM

Hi Msjess and others :emoticons-clap:

 

You are discovering what I have discovered - that the medics don't always believe you even though you know your body better than anyone and are fobbed off on a regular basis. It is so tough when you know what's going on but nobody takes you seriously.

 

I presented with what I thought was rheumatoid arthritis in my hands 3 years ago and was told I was imagining it and I probably had wear and tear (at age 40, yeh) and to get used to it. I was denied a rheumatoid factor test because I didn't need it.

 

Fast forward to March this year and my hands are worse, and my hips, knees, shoulders, elbows etc - I was given a rheumatoid factor test by my hospital and it was 'off the scale' apparently. I have gone 3 years with no treatment for a disabling condition. When I complained to the practice manager, the GP I saw at the time denied I'd ever presented with joint issues and mysteriously there was nothing recorded on my medical records!

 

You have to be quite assertive sometimes, medics find this disease hard to understand because it is so diverse. Also this site has been a valuable resource for information and I now go armed with information when I see the medics (tomorrow again - haematology this time)  - I'm making it clear that I won't be pushed around and I want to treatment I need and deserve.

 

Chin up love, and we'll help all we can. I hope you get some understanding in your journey.



#9 Joelf

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Posted 08 July 2013 - 11:14 PM

Hi Jac,

 

You're absolutely right; it's most important to be as knowledgeable as possible about this bizarre disease. As I've stated before, I was incredibly lucky to be diagnosed and treated quickly by consultants who knew what they were doing, but I do understand that many of our members have not been so fortunate.

 

I do hope your haematology appointment goes well.

 

Kind regards,


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#10 marsha

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Posted 15 July 2013 - 07:09 AM

Msjess,

 

I  have an amazing vascular doctor, she has coddled to my every need. So much so that she really wants me to move from Maine to a warmer climate because of the severity of my Raynauds. I am a firm believer in not all doctors are for everyone, if you do not care for the way you are being treated try to find another one who will listen to your concerns and take them into consideration! I hope you are able to find out exactly what you are battling here.

 

Warm hugs,

 

Marsh



#11 msjess

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Posted 19 July 2013 - 01:27 PM

Thank you all so much, and Marsha thanks for messaging me back and forth, I find it helpful to talk to someone locally... it's crazy how few rheumatologists are in Maine (1 in our part of the state now, I think), and the handful of others are 2 hours away.

 

This is my minimal update so far. I have found out my Hashimoto's is causing me to be hyperthyroid (TSH of .18 this week). I saw my primary and followed up on the rheumy referral. She also screened me for lyme disease (negative) and took an xray of my hands (also negative for any arthritis). I finally have an appointment set up in October with the rheumatologist who is local. And I called the doctor who gave me an iron infusion (dextran) the week before most of my newer symptoms came out (the burning in extremities, itching, and sudden joint pain) and he told me they will try iron sucrose next time, but said I need a rheumatologist.

 

I also finally got a follow up with dermatology this week and he told me that I need a rheumatologist, not him, lol. He thinks it may be lupus, but also mentioned mixed connective tissue disease. Apparently my ANA was again high - at 1:640 for the second time. DsDNA was negative, and he told me that all my other blood work (CBC stuff) was good. I am having the worst joint pain in my hands (fingers primarily, but also near the base of my wrist too some) and knee/foot pains. My primary put me on six days of prednisone (yeah, thanks lol) and said call me in two weeks to follow up. I think the prednisone makes it worse, though? Is that possible?