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Scleroderma? Vasculitis? Thrombophilia?


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#1 Stella48

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Posted 26 February 2010 - 04:54 PM

Hi--

I'm so glad for the internet! I'm a nurse and think about all we used to have to do to research a disease for a paper when I was in college. Index Medicus no more! Thanks so much for being there! Anyway, I have had a 15-year history of ulcers on my ankles which was initially diagnosed as lipodermatosclerosis due to venous disease. This was treated with compression stockings, but I continued to periodically get ulcers and ultimately had saphenous vein ablations bilaterally in 2007.

This didn't correct my ulcer problem though, and last spring they started to get much worse--I ended up with ulcers on my toes in Sept. accompanied by mottling of my feet, pain, numbness and started noticing that my hands/feet were cold at times. My vascular surgeon didn't think the ulcers were due to venous disease and referred me to a hematologist. She did much testing and I found out that I am not only ANA positive, I am also SCL-70 positive. She then referred me to a rheumatologist who looked at my hands and said no to scleroderma and referred me to a dermatologist. The dermatologist did a biopsy of an ankle ulcer and found livedoid vasculitis, then did more testing and found Factor V Leiden. They concluded that the ulcers were occuring because of a thrombophilia and referred me back to the hematologist who has prescribed coumadin. This has resulted in complete resolution of my ulcers :-)

Unfortunately, in the interim I have developed some other symptoms. Not only do my hands and feet alternate between cold and warm throughout the day (I sleep with wool socks), I'm having problems with periodic hand swelling--in the morning I wake up and my knuckles hurt and they feel puffy. At other times my hands look like raisins--this happens throughout the day. Moving them seems to decrease the swelling and get rid of the pain. Additionally, I have periodic bouts of very severe abdominal cramping with vomiting and diarrhea. One time I had a severe vaso vagal reaction after vomiting and fainted. Another symptom is fatigue and exercise intolerance. I used to ride my bike 75-80 miles on a weekend with shorter rides during the week. I'd be surprised if I could do 5-10 miles now. I don't get winded, I just get really really tired. A final symptom is recent onset of hypertension and increased heart rate. My doctor is treating that with 2 meds--a calcium channel blocker and a beta blocker.

I've had lots of labwork--all is normal except ana, scl-70, eosinophils and von willebrand's factor antigen are elevated. A CT scan showed some kidney stones.

My primary care physician is thinking that I might have a systemic immune problem vs vasculitis (all testing related to vasculitis has been negative). I'm hesitant to go back to the rheumatologist and keep pushing without all the symptoms of one or another of the immune diseases. I had an appointment with my primary care physician today and we left it that I would return to see him in 4 months and would email him in the interim if I had additional problems. I figure that I can still work (it has only caused me to miss 2 days because of fatigue, and one morning meeting because of the nausea/abdominal cramping) and I'm gaining (not losing) weight, so I can take the time to see if it'll either get better or get worse. If it gets worse, then I'll follow up. I wonder, though. Is there any harm in waiting?

I would appreciate your perspective given I have had that SCL-70 result. Thanks very much.

#2 Stella48

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Posted 19 March 2010 - 08:48 PM

So the plot continues to thicken. I have continued to feel very tired, nauseated, RUQ pain, now have tinnitus and my hands/feet alternate between being cold and then swollen throughout the day. On Monday I was at work and feeling nauseated, threw up in the bathroom, then my boss's office (not good...) and felt very very faint with RUQ pain. My husband came to take me home but I got really faint on the way home and ended up in the emergency room. Found that I had an itchy rash all over my body when I got there. Abdominal ultrasound was negative for gallstones. Bloodwork -- WBC mildly elevated, lymphocytes low, neutrophils high. Blood sugar 171 (I don't have diabetes). They gave me benadryl and solumedrol for the rash, toradol, an antiemetic and zantac IV for the nausea and abdominal pain and sent me on my way. My primary care physician is trying to get some guidance about what to do next from the rheumatologist and hematologist and also has referred me to a GI doctor. Whatever this is is miserable. I'm just trying to slog along, continuing to work every day but just not feeling good at all.

#3 Sheryl

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Posted 20 March 2010 - 12:43 AM

Stella48, welcome to ISN Forums.
Sorry to hear that you have been so ill. Sometimes the medical community pay more attention to issues when you are brought through the emergency room and have certain tests ordered to try and search for a solution. Hopefully, some of your issues will be dealt with quickly. I didn't have prior diabetes either but now I do. That is what caused my tremendous weight gain. When your system loses control of itself all sorts of strange things start happening. One diagnosis after another starts the list of systemic problems. Your new GI doctor will help you with the abdominal pain and nausea that comes along with that. There are so many treatments as you are already aware of. Once they come to a conclusion you should be on your way to feeling better. Keep us informed on how you are doing.
Strength and Warmth,
Sheryl

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#4 Shelley Ensz

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Posted 20 March 2010 - 06:33 AM

Hi Stella,

I'm sorry for all you are going through. I'm sending some warm hugs your way, in hopes they make you feel a little bit better.

I would urge you to consult a listed scleroderma expert, not a 'normal' rheumatologist, because scleroderma can affect any part of the body, not just/only/always our hands. Please don't even bother going back to the rheumatologist who only looked at your hands! An Scl-70 can be very telling, when combined with many of the symptoms that you have. And if it might be this, that or the other thing, it particularly requires an expert in scleroderma to sort it all out, to give an idea of which direction your treatment should be focused on.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 debonair susie

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Posted 20 March 2010 - 08:08 AM

Hi Stella,

Having read each of your posts, it sounds as though the doctors you have seen, to date, are diligent and resolute about your symptom causes...as you are.

Having been the "scenic route"...four years, on the search for answers, time only seemed to complicate things, as more symptoms appeared, making (my goal) seem even more unreachable.
In MY case, finally came the diagnoses, yet somehow, linking together. Unfortunately since, I've received a few more answers to new symptoms that have "cropped up".

As your own advocate, I believe you will be able to see this through more quickly, having the insight you do.doctors are diagnosticians, just as mechanics, so they are quite dependent on testing via equipment, lab work, but also listen to our input as well.

As Shelley already mentioned, should you have access to a Scleroderma Expert, it would behoove you to get set up with that specialist. Their vast knowledge extends beyond, which would be of great benefit to you, given the information you have already gathered, to this point.

Please keep us posted? I feel for your present issues, and will keep you in my thoughts, Stella.
Wishing you expeditious results!
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#6 enjoytheride

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Posted 20 March 2010 - 05:38 PM

I'm not sure what some of the terms you used meant but I do identify with many that you did list. In fact just today, I was freezing with the thermostat set at 73 and had a quilt over my shoulders and mittens on. One of the oddities is that when this happens, my finger nails are painful.
I also recognise the fatique you mentioned- like having no fuel to my muscles. I feel that I can't take one more step without resting. There is another kind of fatique too- one where I feel sleepy the minute I sit down. I thought they were the same combined symptom but actually they happen seperately.
What was really surprising was when I stated taking hydroxychloroquin, I noticed relief from things that I hadn't really been directly aware of being a problem such as the limited amount I could expand my chest to take a deep breath. Also my digestion started working better (I was throwing up too) and I stopped having pain in my eyes when out in the sun.
I'm not sure that giving you a list of similar symptoms is helpful for I've not resolved things that well either. I can tell you that I also think a specialist is the way to go too. I need to make myself do that but it's a long trip to the big city and I'm such a rural person now. I should take my own advice.
I hope you find an answer soon. (((hugs)))

#7 Stella48

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Posted 22 March 2010 - 10:13 PM

My primary care doctor is working with the hematologist and rheumatologist to get their feedback and also has set up an appointment with a GI doctor for 3/30. In the mean time, I am finding that I am not tolerating larger meals. Smoothies and soups go down OK. I've lost 5-6 pounds in the past couple of weeks. I'm nauseated most of the time now with that dull right upper quadrant pain. I haven't had another one of those acute vomiting/dizziness 'episodes' (thank god.) probably because I am being careful about eating and also am taking Zofran.

Other symptoms continue--cold hands and feet, tinnitus, fatigue (missed the first outdoor bike ride of the season this weekend). I'm trying to cope by staying focused on other things--sewing, work and family.

#8 enjoytheride

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Posted 23 March 2010 - 05:53 AM

Please post here anything that you find out as my symptoms seem so similar, including pain on the right just at the bottom of the ribcage and not tolerating large meals, etc. In fact I walked kind of hunched due to discomfort there for about a year.

For what it's worth, I have found that my energy is very low after I eat for several hours so I have developed a lifestyle where I do not eat until about 2pm. I find that I can then use the morning for doing chores with enough energy. If I wake feeling the need for fuel, I drink some grape juice.

Then when I do eat, I plan on being sort of lazy throughout the rest of the day. My last meal is about an hour before going to bed- which would have been a no-no due to GERD but that seems to not bother me so much. Anyway, the amount of time overnight seems to allow me to process food.

Hoping to here good news from your visits.

Cindy

#9 Stella48

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Posted 28 March 2010 - 12:15 AM

Glad to know that I'm not alone with these wacky symptoms. With one exception, I've had a good week--have been very careful about what I eat. Blending up a banana and some yogurt in a smoothie for breakfast, eating an orange mid-morning, a light lunch a bit after noon (something like 1/2 cup noodles or soup) and some cottage cheese/fruit, another snack at 4 and a light dinner--usually portioned at about a half of what I used to eat. An hour or so before bed my treat is one of those fruit popsicles. So far so good. No more vomiting in my boss's office, less nausea and the RUQ pain is milder. I am noticing that, even with all this fruit, I am constipated. I've lost 2 more pounds, which means 9 pounds in 3 weeks. I'm 20# overweight, so can afford to do this for a while, but it's not a good long term plan. The one exception was when I didn't follow my plan and tried to eat a chicken schwarma sandwich, which caused crampy abdominal pain. I won't be trying that for a while.

I was reading about gastroparesis and wonder if that is what is going on and plan to ask the GI doctor about this when I see him. Symptoms, particularly the horrible cramping and vomiting and intermittant nature of the episodes are consistent with this. Also the blood sugar variability that seems to have cropped up. Treatment for this is usually diet-related--smaller, more liquidy meals are handled better in the stomach and move through the GI tract faster.

#10 Stella48

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Posted 09 April 2010 - 11:05 AM

So I went to see a GI doctor who did many more blood tests to rule out various causes for the nausea and vomiting. No liver issues (ALT is still mildly elevated, AST is fine), hepatitis, no mastocytosis, no histamine or serotonin issues. All blood tests turned out negative except a quite elevated complement level. Hypercomplementemia is usually associated with acute inflammation. My nausea and vomiting is very episodic and also is associated with swelling so it seems like it might be something called angioedema--but angioedema is associated with low complement levels, not a high level.

He did an upper endoscopy and a colonoscopy. The colonoscopy is normal but he found esophagitis with the upper endoscopy. Biopsies for the colonoscopy are fine and the upper endo are pending. I'm still feeling nauseated, have RUQ pain, feel fatigued and my hands/feet spend the day cycling through being swollen and then being shriveled, white and cold. I'm still slogging through every day at work but feel tired and as though my head is in a cloud.

So none of this is making any sense. It seems to me that with an elevated Von Willebrand's factor, clotting issues, the cold/swollen hands and feet, new hypertension, and the episodic severe nausea/vomiting/diarrhea that something is going on with my vascular system.

So I'll wait for the path results from the esophagus and stomach to come back, hope that I don't get another vomiting episode (the last one was very scary) and then see what comes next.

#11 enjoytheride

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Posted 09 April 2010 - 04:37 PM

I have also seen a GI doctor since I posted. Because (turn away all those easily grossed out) what I vomit is pretty much undigested, she said it is unlikely to be slow motility. Slow motility usually shows up with much more digested returns. She felt that it was reflux. And she felt that I was having bouts of hypoglycemia which was what was making me so tired after eating. So she recommended very small meals (1/2 an apple or a couple of ounces of meat, etc) regularly every two hours.

Which has proven harder that I thought. First the small proved difficult as I had nothing prepared for little meals and juggling to come up with something every two hours so many times a day didn't work when I was tired.

I have since put up "meals" in little half pint canning jars- like a bit of spaghetti with a little sauce on top, or made up a bunch of 1/2 size burgers and froze them.

Next problem is getting something every two hours, even if I am not hungry. Especially bad when I'm busy and don't want to stop.

But I have found that if I do this, my fatigue is much less and I do feel better.

I just need to get some sort of timing device to carry with me. Bing-eat. Bing-eat.

#12 Stella48

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Posted 28 April 2010 - 02:38 PM

I went to see my doctor yesterday. He wants to get the opinion of an immunologist and is emailing the hematologist again to keep her up to date. We still don't know what is causing this. I keep trying to figure out whether it is something I'm doing--eating something that isn't agreeing with me or not taking care of myself well enough, or having too much stress in my life. But nothing is jumping out as a particular stressor. My ears keep ringing, my hands and feet keep swelling and are so very cold much of the time and I keep having problems with diarrhea. I'm not having too much success with keeping symptoms in check.

Anyway, as a coping strategy, I am finding that I just need to keep trying to live my life, giving myself a little slack if I don't feel great. I keep hoping I'll just wake up one day and feel normal again.

#13 judyt

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Posted 28 April 2010 - 05:18 PM

Hi Stella,

I am very sorry to hear that you are not well, and hope you are getting some comfort from other members here.

I have just read your posts for the first time and feel that I can identify with almost all of your symptoms. Since you have a positive ANA and Scl 70 it would seem likely that you do have Scleroderma and if I was in a position to see a Sclero Specialist I would be there as fast as I could.

I am not as well educated in medical matters as you, but I have always had an interest and in my early years I worked in a Haemotology Lab. That has set me up quite well to understand blood other results quite well and I am well aware of being your own advocate. You don't say what age you are, but what I am trying to get around to saying is that I have had Scleroderma like symptoms since I was 22 and I am now 66 so I have had quite a bit of experience of the beast. Almost all of the happenings you mention I have experienced at one time or another, from GI pain to vomiting to being cold, having ulcers and so on and on. I haven't brought up yesterday's dinner undigested for at least 6 months now!! and that's a plus, I live with constant discomfort in what you call RUQ, my fatigue level is really high, I am ready to go back to bed about 30 minutes after getting up in the morning, when I have been sitting for a while and then get up to walk away it feels as if my legs will not support me. I would say this is what we learn to expect and the more help you can get the better.
It took an admission to Emergency in 2003 with a haematemesis for me to get a diagnosis and from there on in I have been improving - I think just knowing that it is not all in your head helps a great deal.

.
Hope to hear soon that you are getting on top of things, or at least learning to live with it.
Warm wishes and comforting hugs from New Zealand.
Judy T