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Missouri man

Disappointed but not surprised.

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I have been reading here for awhile. Have read all the stories and am on almost page 500 on main forums. First I want to say wow. There are and have been an amazing group of people here. 

 

Ok so about me. I'm 39 male father of 5. I had an accident 5 years ago which pretty all they found was a bulging disc at l5-s1. But I also had a little broken skin spot at my elbow that got infected and took over almost my whole arm. A trip 2 hospital and IV antibiotics it went away, but I think it woke up a monster inside me. For 5 years now I have been trying to get pain relief with no help. Because what my imaging shows doesn't match the pain I'm in. I have gotten worse year after year. 

 

So at present I pretty much have pain in all my joints. Raynauds in hands and feet. Gerd with Barrett's esophagus. Dry eyes and mouth. Something that feels like an ear infection but no infection, a thickening bladder wall and kidney stone after kidney stone. 

 

Just seen my first rheumatologist today. I wasn't expecting much, but honestly I feel very disappointed, she shrugged off everything I told her. Really didn't do much of a physical. At the end she said well you don't have lupus. Thing is my ANA pattern was nucleolar. She did order more blood tests and a chest xray and referral to gastro. Oh yeah, besides pain my fatigue is a very close second. The last 3 months I have dropped 40 pounds.

 

Anyway there ya go.

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Hi Missouri man,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with unpleasant symptoms and have not had a good experience from your rheumatologist. I can understand your frustration; I'm not making any excuses for her, but in your rheumatologist's defence I would say that scleroderma (like most autoimmune conditions) is extremely difficult to diagnose and she has organised more blood tests and referrals for you. After these, she may be in a better position to advise you.

 

I would also recommend that you consult a listed scleroderma expert, should this turn out to be your diagnosis, as such a complex disease requires specialist knowledge and expertise, in order that the correct treatment can be given. This applies to any complicated autoimmune disease.

 

Kind regards,

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks. I reckon I'm more disappointed in the process. Just ready for a name.

 

I was a little surprised that she didn't check my skin at all anywhere. Didn't look at anything but knuckles on my hands. I agree on the specialist part for sure eventually. Our rheumatology department is very lacking here. 1 full time who doesn't except new patients and 2 that travel around and are here 1 week a month. I figured Springfield Missouri would be better. But yeah I mainly wanted to get my story started and I was pretty low yesterday when I did.

 

I had made the decision before the appointment that no matter what after the appointment, I had to quit buying the over the counter stuff I was using for pain, because after a year and a half it was really financially hurting us. I was spending about 1k a month on it but is the only thing or that I ever found that half way worked. But my kids holiday is more important. I will push through the pain somehow. it took me 6 months to get into this rheumatologist and she told me to schedule my next 1 in a month. However, they dont have an opening for 3 months. 

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Well, I didn't die of pain like I was afraid of after stopping the over the counter medicine I was taking that was financially breaking us. I'm just pretty miserable but I can still do what I need to do. Just very slowly. The same day I stopped I did get my primary care doctor to prescribe me gabapentin because I have some terrible peripheral neuropathy going on and I definitely can't live with that.
 

What blood tests that have come back so far look good for the basic stuff. CRP is still pretty high and my vitamin D was super low again, so I'm dealing with that. Chest xray came back normal. so I'm basically waiting for the autoimmune parts of the blood test. I'm just going to keep on keeping on and reading here.
 

Take care everyone and I will update if I have any changes or questions.

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Hi Missouri man,

 

Thanks for updating us and I'm glad that some of your blood tests are not as bad as you feared.

 

You may find that things will stabilise and please let us know how you get on.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Missouri man,

I also live in Missouri. I have had my general practice provider monitor my Raynaud's, since at the time (I've had it for 16 years) - it was only that. I live near Kansas City and I have learned from friends that the rheumatologists here in the area leave a lot to be desired in regard to Sclero (all types).

 

Please let me know if you (or anyone else for that matter) in the KC area have had a good experience with a specific doctor. Otherwise, I am not opposed to traveling to find better alternatives outside of the area. 

 

I hope you get some answers - I feel like this disease is like wack-a-mole. By the time you are narrowing down the underlying cause for one organ or system, it disappears and then a new one pops up when you least expect it! 

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Hi MissyQuack,

 

Welcome to these forums!

 

I'm sorry that you haven't been able to find a listed scleroderma expert , but we have found that some of our members do have to travel out of state to find one. Failing that, I would advise you to try and find the very best rheumatologist that you can.

 

Kind regards,

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi missyquack.
 

Springfield has a scleroderma group. I haven't looked into it because  I may have nothing, but I did see they said something about St Louis. Other than that, best I can find from this website is Chicago or Dallas. Warmer in Dallas lol.

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