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Waiting to see a rheumatologist

diagnosis raynauds scleroderma CREST

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#1 shazzer1976

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Posted 30 January 2014 - 04:47 AM

This is my first post on this forum.  I have not been given an official diagnosis yet that I have this illness so I am trying to stay positive and I have seen some very positive stories of people getting with life as close to normal as possible. 

 

I have had Raynaud's for a number of years now but recently it has become more severe and has spread to other parts of my body, feet, nose and lips in particular.  Even if I am not having a full blown attack, my finger tips remain bluish and cold and I have had my first 'hack' on one of my finger tips due to skin drying out and becoming quite thin and taut.  I have taken moisturising my hands a lot more seriously since that happened.  I notice other changes in my hands.  The skin on my knuckles is usually quite red and ruddy in appearance and i have what i would call sausage fingers and puffy hands.

 

I am being sent to have an oesophago-gastroduodenoscopy ( OGD) in a couple of weeks as I have near constant heart burn and acid reflux.  Sometimes I find swallowing quite painful and I have the sensation of food getting stuck in my gullet.  The doctor gave me tablets to take to prevent the heart burn and if I forget to take them I suffer for it that day.  I notice if I have been exercising - either lifting weights or running - I can experience a horrible burning sensation in my throat.   

 

I went to the doctor before holiday because of weekly visual migraines.  When a neurologist saw me, he suggested they were probably brought on by stress and tiredness, and while I know there is definitely an element of truth in this, I am curious to know whether there could be a connection between this illness and this type of migraine.

 

The doctor ran a lot of blood tests on me before holiday and I am doing the rounds of the hospital seeing different specialists.  Curiously she was not so quick to refer me to rheumatology even though the tests she ran showed positive for various autoimmune anti-bodies.  She eventually made a referral for me when I went to see her recently and she saw what my hands are like during an attack. 

 

I have been to gynecology due to having very large cysts on my ovaries (not sure if there is a connection?) and haematology.  Both consultants have queried whether I have been sent to rheumatology.  I saw the haematologist yesterday because of raised platelets.  He mentioned that he thought a lot of the symptoms and problems I have been experiencing lately could be connected and he said he was going to write to my GP to strongly recommend that I see a rheumatologist. 

 

The bizarre thing is I feel fine at the minute apart from the Raynaud's.  I went running a couple of days ago and my fingers felt like they had been slammed in a door.  I do have a history of Grave's Disease  so it would not be beyond the realms of possibility to develop another autoimmune condition. 

 

I'm not entirely sure what the purpose of posting this is!  I am looking for information and my search led me to this website.  When I eventually get my referral, I'll be telling my consultant how to do their job...  Perhaps not the best thing in the world...

 

Thanks for reading.



#2 Joelf

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Posted 30 January 2014 - 12:07 PM

Hi Shazzer,

 

Welcome to these forums!

 

I'm sorry to hear that you're experiencing worrying health symptoms and I've included links to our medical pages on Raynaud's, Autoimmune Thyroid Diseases and Reflux, Heartburn and GERD which I hope you'll find helpful. Scleroderma can affect any or every part of the body, including the circulatory (vascular) system  and we also have a page on Vascular headaches which can include migraine headaches, cluster headaches, and toxic headaches. They all involve dilation, or a swelling of the blood vessels.

 

As your haematologist has recommended, your next step should really be to have a referral to a rheumatologist (via your general practitioner) and preferably a Scleroderma specialist in order to investigate your symptoms further. Unfortunately, Scleroderma is notoriously difficult to diagnose due to it's many idiosyncrasies, which is why we do recommend that, if possible, you consult an expert. You'll find it beneficial to make a list of your symptoms and queries, in order to discuss these with him, when you have your appointment. I can understand how you feel, as one of my simple joys in life is telling my long suffering medical team how to do their job!! ;)

 

Please do keep posting and let us know how you get on.

 

Kind regards,


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#3 debonair susie

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Posted 31 January 2014 - 08:53 AM

Hi shazzer and I welcome you to these forums!

 

I am VERY relieved you opted to post here, as what you have been experiencing is what many of us have also experienced, albeit part/parcel the varied symptoms.

 

I too, started out w/the raynauds symptoms, which turned out to be a precursor to what would be other diagnoses.

I AM concerned about the symptoms of the raynauds that you spoke of; with the ongoing "bluish/cold fingertips, it's important (attack of no, that this is addressed ASAP. As you may already know, it is SO important to keep all affected areas as warm as possible, even if it means wearing the warmest possible mittens/gloves/slippers fulltime, no matter the temperature.

 

First of all, I am in total agreement about your seeing a specialist; (as Jo mentioned in her great post), a Scleroderma specialist, if it's at all possible.

I SO hope that your GP follows through w/your other doctors' concerns, which I feel are well-warranted. I hope that these doctors advocating for your better health are successful in getting this on track for you.

 

Please know that we welcome you here, to post any time you have concerns, such as you have had! All who are members here, offer GREAT support and hope the very best for you! Also, we look forward to updates from you!


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#4 shazzer1976

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Posted 31 January 2014 - 10:38 AM

Hi,
I just wanted to post a quick word of thanks to the two members who replied to my posts.

I have been paying more attention to keeping my hands warm, wearing fingerless gloves while I am work. I got a few curious looks but people will just have to get over themselves! I went to bed last night with a pair of gloves on and oil on my hands. That has made a good difference to the dryness.

I feel like a bit of a fraud though because I have just been out for a nice run. In fact I think I made my best time to date. I don't understand how I can feel so healthy on one hand but have these other things happen to me on the other. Incidentally I had several layers of gloves on and my winter running gear. My hands behaved quite well. It is a little milder today. Two days ago my fingers felt like they had been slammed in a door while I was running. I do hope this is a hobby I'll still be able to pursue to some extent! It gives me such a buzz and I love getting fresh air! (Plus I entered my first marathon this year.)

I'm off my acid inhibitor tablets as of today before the OGD so I'm not looking forward to the acid reflux. I had a bit of reflux while I was running but it wasn't as bad as it has been in the past. Maybe because my stomach has had a chance to heal. I'll stick to very plain food. Sometimes the most innocent looking food can give me horrible indigestion.

I appreciate the good wishes and I'm keeping my hopes up. Business as usual here.

#5 judyt

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Posted 31 January 2014 - 02:53 PM

Hi Shazzer,

 

Like Susie, I have to say that your history so far is very similar to mine.   I am pleased to hear that you are having an Esophagael investigation because the feeling of food getting stuck coupled with the reflux is a very familiar story.   Sausage fingers are familiar too.

 

While you are off the meds. for your investigation it would be good to observe all the suggestions for avoiding heartburn.   Don't lie down flat, particularly less than 2 hours after eating or drinking.   Likewise bending over, as in the garden, not that you would be doing that this month I think.   Keep away from acidic or spicy foods and alcohol.

 

Great if running gives you a buzz - I wish!!   I have never felt any benefit from exercise but keep it up as long as you can it is good for you.   The longer you can keep it up the more it will help you.   As well it will help you to notice more quickly if you have any changes in your fitness that you can't put down to any other reason.

 

Keeping warm from the inside out is the thing to do - that means wearing thermal insulating undies for a start then adding warm things on top.  I know I live in a much milder climate than you do but we still have to follow that rule here.

 

It is good to start a routine for taking your meds.  Forgetting is not an option so start making it a habit straight after your OGD.

 

Best wishes to you from the upside down side of the world

Judyt



#6 shazzer1976

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Posted 03 February 2014 - 02:21 AM

Thanks JudyT,

I think I overdid the exercise yesterday with a 10 mile run!  Oops! I'm feeling quite fatigued today and drinking lots of water and eating back those calories...(Running is maybe not the best form of exercise for weightloss.  I think you either eat back the calories you use while running or you sleep until some of the energy you have consumed is compensated for. )

 

Anyway, to get to the point, something very odd happened on my run. I thought I was in danger of having to remove one layer of gloves as my hands became warm for the first time in donkeys!  The finger tips not so much so I perservered with the layers anyway! 

 

Day 4 without the Lansoprazole and I am noticing the difference.  I am not in agony but I have that uncomfortable feeling.  I wish there was another test other than an OGD to look into your stomach that would be as effective and telling.  I'm really not looking forward to this procedure at all or what it might reveal.

 

I guess this is a lesson in patience and courage.  I think the members on this forum show amazing courage and fortitude.  I hope that is not too gushing.

 

Wishing you all a good day.

Shazzer



#7 judyt

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Posted 03 February 2014 - 10:36 AM

Hi Shazzer,

 

Just thinking that I have never had what you call an OGD, and have never had to prepare by stopping my reflux meds.   I wonder what the difference is.   I have had loads of Endoscopies in the past 10 - 12 years but mostly EUS (endoscopic ultrasound), plain Endoscopy and even a TOE (trans-oesophageal endoscopy) looking at my heart.

 

As well I have had at least two Barium swallows the first when I was about 11years old in the 1950's, which look with xrays at the progress of food on the way through.   And just to round off the experience have had an Endoscopy while my Oesophagus was stretched.   We are so lucky to live in this century when our problems are not so unsurmountable and we can mostly expect help from practitioners.

 

Once again best of luck for your up-coming procedure.

 

Judyt



#8 Amanda Thorpe

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Posted 03 February 2014 - 08:24 PM

Hello Shazzer

 

Welcome, it's great you feel well and still exercise but I would take it easy until you know whether anything more sinister that Raynaud's and reflux is going on.

 

I kept climbing onto my cross trainer, even after loosing mobility in my ankles, and did not do myself any favours long term. Running was impossible by then hence the cross trainer.

 

Let us know the results of your gastric testing.

 

Take care.


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#9 shazzer1976

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Posted 13 February 2014 - 07:16 AM

Update. Tried to have my OGD today. Three attempts, no success! I just couldn't tolerate it. I felt like I was choking, retching, suffocating all at the same time.

 

I even had sedation on the third attempt. Nothing to show for it apart from drowsiness and a headache.

 

Feel Ike I have wasted everybody's time.



#10 judyt

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Posted 13 February 2014 - 10:46 AM

Hi,

 

That's a shame, but never never, feel it is your fault. I have always had the same feeling and for the first few times I had to ask that I should be asleep.

 

What happens with me is that they spray my throat, then put in the mouthguard real quick while I am breathing through my nose, and at the same time I get the sedation through the lure in my arm and it's curtains for me.   I know nothing until I wake up in recovery.  

 

Sometimes I think that the staff don't really understand how difficult swallowing can be for us.   They have hundreds of patients for whom it is a piece of cake and no trouble even without sedation, then one of us comes along and they have to try harder.   They tell me I am not really deeply asleep and maybe that is the case I don't know and that's what matters.

 

Some folks say they don't want the sedation because they have to go back to work afterwards, or they have nobody to drive them home and if that is the case then that is not so easy.   I always write the day off, I have my husband to deliver and pick me up then often I sleep for most of the rest of the day.

 

Better luck next time.

Judyt



#11 Amanda Thorpe

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Posted 14 February 2014 - 09:28 PM

Hello Shazzer

 

You must have been so disappointed! My dear friend with complete gastric failure could not tolerate the OGD either. It seems people who have swallowing difficulties find it difficult to swallow so it begs the question why use that procedure rather than endoscopy but what do I know! I assume other arrangement have been made for another type of test?

 

Take care.


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#12 shazzer1976

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Posted 17 February 2014 - 01:17 PM

Thanks, guys.
I don't think I have difficulties swallowing, just well developed gag reflexes! I'm seeing a gastro-enterologist. My GP is recommending a barium meal. I'm not even sure I am up against Scleroderma. I'm still waiting on a letter from the haematologist I saw and a trip to a rheumatologist. I'm back on the Lansoprazole in the meantime. My GP was suggesting IBS when I went to see her. I don't know. At the minute I'm grateful to have a lull in some of the symptoms I had been experiencing. Even the Raynaud's is not as bad as it has been. I even managed to survive the great outdoors yesterday without gloves and my feet were warm in bed for the first time in months.

I really feel for anyone with the issues associated with Scleroderma being out through this sort of a procedure!

Thanks for all your good wishes.

#13 quiltfairy

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Posted 08 November 2014 - 10:09 PM

Welcome to the forums. I also have trouble swallowing and food seems to get stuck; I had a barium swallow test and everything was going okay until I just could not take the taste of the barium any more, so they said I should have a endoscope but as of yet my doctor has not referred me. I hope everything goes well with the rest of your appointments.

 

The test did show I have weak swallow muscles for which I was referred to a speech specialist.

 

I also have Raynaud's; it can be horrible. I live in the northern part of the US and we normally have cold winters; I have thought of moving south, but my parents are getting on in the years so I am staying put.  



#14 Amanda Thorpe

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Posted 11 November 2014 - 02:37 AM

Hello Quiltfairy

 

How does speech therapy help swallowing? I would never have put the two together? Intriguing!

 

Take care.


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#15 quiltfairy

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Posted 12 November 2014 - 05:26 AM

They say it would have helped, but I only made it about twice then I started having car trouble and the speech therapist is 20 miles away.

 

A friend finished her speech therapy and she said it worked great.



#16 Amanda Thorpe

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Posted 15 November 2014 - 02:25 PM

Sorry quiltfairy, excellent for your friend and thanks for replying!


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