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Should I Push For Visit To Rheumatologist?


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#1 dee07

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Posted 05 March 2007 - 07:01 AM

Hi All-
New here. Wondering if anybody might be able to help me decide whether I should let this go or mention it again to my primary care physician? Recently switched PCP’s. Old doctor suggested visit to rheumatologist. Did not make appt before change to new doctor. New doctor says not necessary since my fingers do not change color.

Some background might be helpful: Started with numbness of my toes about 4 years ago. Eventually discovered B-12 deficiency. Positive Antiparietal Cell Antibodies, but not pernicious anemia according to hematologist. See hematologist also for Iron Deficiency Anemia that I’ve had for eleven years, on and off, with no found cause. EMG showed neuropathy/feet. No improvement in neuropathy after two years of B-12 injections. Neuropathy has now started in my hands. Neurologist has no explanation. When my old primary care physician suggested rheumatologist, I wasn’t sure if she was just trying to appease me or if she had a real concern. She had a tendency to poo poo everything. Had Sed Rate/ANA in 2004, both neg. Have had many other lab’s done since then. Wondering if anything “sclero/raynaud’s” related shows up in routine lab’s like CBC, routine chemistries, etc

Should I push to see a rheumatologist even though my fingers don’t turn colors?
I told my doctor my hands are frequently cold…ice cold, but that they can be the other extreme also…burning hot and throbbing and swollen feeling. Same with my feet. My hands very often feel stiff and swollen. My fingers have become extremely sensitive. The slightest bumps cause excruciating pain. (Just like my toes) He was only concerned with whether they turn colors. I forgot to tell him my hands do seem to do weird things in the shower. Not typical of anything I’ve ever read, though. One seems to turn red and the other turns white. Strange? And when I get out of the shower, my ears are bright red. Any more, I often have an area of peeling skin on my earlobe. My right foot has lots of purple spots that nobody can explain. Also, when I get out of the shower I feel an absolute NEED to put lotion on my entire body.

I can’t remember the last time I felt warm! Odd for me. I was always the one who was hot. Over the past couple of years, I absolutely can’t stand the cold. I just can’t seem to get warm.

Somewhere on this site I saw something about “pitting scars”. It made me think of the things on my face…I’ve started getting these huge pores...like holes (pits?) I’m 45 years old. Is this normal at my age? Is that “pitting scars”?

I could go on, but I think this is probably way too lengthy as is! It’s hard to condense several years’ worth of history. So, does it sound like nothing or something I should bring up again? Thanks.

#2 americanmike

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Posted 05 March 2007 - 11:54 AM

Hi Dee--
I'm not much of an ambassador but welcome to the board. So many nice people will help you with their stories advice compassion empathy.

Pitting scars are on the finger tips or pads. Your symptoms sound to me unlike typical scleroderma. Let me tell you I'm far from a doctor!!!

When our health is not great nothing in the world is more important. So... I would see a rheumatologist and get his advice. He'll do some more specific blood work and try to see if their is anything in his specialty that fits what you have going on.

Why not. More info the better.
I'm sorry you don't feel good and have no answers. Keep pushing and don't let doctors send you away. If you don't feel good, and you have numbness there is something going on, and until someone tells you you are smart to keep looking.

Michael in Florida

#3 Heidi

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Posted 05 March 2007 - 01:24 PM

Hi Dee,

Welcome to the forums! I am glad you have joined us, but sorry it is because of the numbness in your hands and toes. I too have a lot of neuropathy (mostly just fingers/hands). My rheumatologist prescribed Neurontin which is used for nerve pain and it has helped tremendously!

I agree with Mike in that your symptoms don't sound like typical Scleroderma to me (but I am certainly NOT a doctor!), but that doesn't mean there isn't something autoimmune/systemic going on (maybe something vascular?).

Anway, it probably wouldn't hurt to get some input from a rheumatologist if you can get a referral. The only problem I see is with negative ANA results, he/she may not be able to tell you too much more BUT then again, maybe he/she can run some different tests or know of some diagnosis for which your symptoms do fit.

Sorry, I am not more helpful. I do hope you will post again and let us know what you decide and how it goes.

Warm wishes,
Heidi

#4 Elehos

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Posted 06 March 2007 - 03:55 AM

Hi Dee,

The soles of my feet turn dark purple in the shower, but the purplish "bruised" appearance is always there regardless of temperature. My hands have begun to do the same thing, and although they're generally purplish and freezing once it drops below 70 degrees, they're changing color in the shower now too. It's amazing how much laundry I go through trying to stay warm too! I took off my night clothes, set them on the chair, and it looked like I had just folded an entire load and left it there.

Oh, and the gallons of lotion after a shower! My oil glands when on strike completely last year, and although I've needed lotion on my legs most of my adult life, it's impossible to keep moisture in my skin anywhere now. My chin tends to peel quite often, and I've found that's a sign of the calcium popping through again. It happens in cycles about every 2 to 3 weeks--the redness, peeling, the little "sores," then the calcium crystals pop out everywhere. It does leave pitting depending upon how bad it was that during particular round, and there's pitting on my chin and a little bit below the cheekbones. Mike mentioned the pitting on the fingers, but since I don't have calcinosis there, I doubt I'd get pitted fingers.

As far as the blood work goes, I don't know about picking up anything about Raynaud's since you can basically look at your hands and feet and tell, but since your ANA came back negative, you might want to ask about the SCL-70 blood test. I'm still battling my doctors to get all the necessary bloodwork done since they tend to do a little here and there, and it's annoying! There's good info on this site for the bloodtests that would help rule sclero in or out, and I've printed things out for my doctors as well, so that might be a good move. Even if your new doctor says you don't need a rheumatologist, the bloodwork will also speak on your behalf!

Glad you found the forum, but sorry it's due to your health. Keep after your doctor, and go get that rheumatologist! :lol:

Best wishes,
Elehos

#5 kramer57

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Posted 06 March 2007 - 06:10 AM

dee07, I think going to the Rheumatologist is a good idea for you. Swollen hands & dry skin & being cold all the time may be symptoms of Sclero. I have Raynauds, and my hands and feet turn red when they get warm after being cold so maybe that's what happens when you get in a warm shower after being cold, your hand & ears get red (Raynauds can affect the ears too). I had about 20 blood tests checking for Sclero and other autoimmune diseases, all were normal. My rheumatologist made the diagnosis of Sclero based on symptoms and a finger biopsy.

Best wishes!
Karen

#6 janey

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Posted 06 March 2007 - 07:39 AM

Hello Dee,
I'd like to join the others in welcoming you to the forum. I'm sorry you are having health problems and unable to get answers. We've all been there at one point or another. I agree with the others that you should probably see a rheumatologist if for no other reasons than to rule things out and to ease your mind. If you are dealing with any type of autoimmune disease, the rheumatologist should be able to recognize it and address it.

I find what happens in the shower very interesting. If you have a hand that turns white, then there is the possibility of Raynaud's (but I am certainly not a doctor!) With Raynaud's, it's not all the fingers or nothing. My fingers are all at different stages - a couple turn completely white, most of them turn purple and the remaining - bright red. It all depends on the blood vessels within those fingers and the condition that they are in. So this is definitely something you should mention to your doctor.

I do hope you get in to see a rheumatologist or if nothing else - get a second opinion from another doctor. I can't tell you how many times I've change doctors! Let us what you decide and please, keep us informed on how you are doing.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 Sarah

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Posted 07 March 2007 - 11:54 AM

HI I must chime in on this one. I am not a dr. but upon reading your entry you speak of quite a few nutritional defincienies, including iron and B 12. These are very common deficiencies in celiac disease, an autoimmune disease of the intestines. Another side effect of celiac disease is neuropathies with no explanation. You may suggest having a celiac panel blood test run if you have not already. I am not a dr. but I do have celiac sprue and I know form personal experience and from speaking with many people that it can present in many ways, with many rheumatological symptoms. It is often overlooked, but it is not uncommon. Anyway some food for thought. I hope you get to the bottom of it soon, it can take so long with autoimmune at times. Don't lose hope, with the help of a good rheumatologist you will get to the bootom of it. Oh btw- you don't need a rheumatologist to run the celiac panel blood test, your primary care physician can order it easily. Sincerely, Sarah.

#8 Sweet

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Posted 08 March 2007 - 05:18 PM

Hi Dee,

Welcome to the board! Looks like you've received a lot of information already so for now I will just give you a big warm welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)