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#1 annie b

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Posted 08 December 2009 - 03:16 PM

I am waiting on a diagnosis conformation after having had blood drawn, again, and another biopsy, 17 doctors since last May. The pain, three types, is so disabling. It is in my legs from the knee to the foot arch. No itching, it is burning like a sunburn constantly and then electrical shocks to the leg bone especially at night and then surface area sore/pain that moves around on the legs.

Do others have this going on? I have looked and can't find what to do to relieve the pain so I can sleep. I average 2-4 hours a night. My legs feel constricted like I have wide tape binding them, it is very hard to walk up stairs or stretch.

Annie B

#2 Shelley Ensz

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Posted 08 December 2009 - 03:41 PM

Hi Annie,

Welcome to Sclero Forums! I'm sorry it is due to concern about possible scleroderma, though.

Do you have any other symptoms, besides the pain?
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.

#3 nhguy

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Posted 09 December 2009 - 08:08 AM

Hi Annie,

You've got a friend here.

I was diagnosed with scleroderma in October, have pains in my legs as well as both arms.
Hope you feel better soon. :flowers:

#4 annie b

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Posted 11 December 2009 - 05:53 AM

Yes ,my legs have been cooking and peeling for 8 months. I feel like I have a sunburn or hot oil on them all the time (from below the knee to the toes)My feet are swollen. I blister on the legs like I have poison ivy and then the blisters weep. If I am bumped, even gently, I bleed. The pain shoots to the bone too and jumps around. There seem to be three types of pain. The places on my legs are now scabbing over and I seem to have flaky scales. My legs are so constricted I can hardly walk but keep going for I don't want to end up in a wheel chair. Does any of this sound familiar? I was told it could be systemic sclerosis (progressive) or Morphea (generalized) all before any blood work. Other tests show all organs doing well... all this waiting and now 18 doctors. later (am in a small town) so am driving 75 miles to see a specialist next. Am very scared. Thanks for answering me and being welcoming. Annie B

#5 annie b

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Posted 11 December 2009 - 05:59 AM

Thanks for your support. I am only allowed this last post so I wish to thank all of those that sent me friendly messages of welcome. I did answer the first message which I hope you will read since I am restricted until I have met the requirements for being on the forum. It is truly comforting to have a place to compare notes and share joys and concerns. Thank you for being there for me. I will be there for you too. Peace and love to all, Annie B

#6 annie b

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Posted 11 December 2009 - 12:11 PM

My new doctor called to tell me that the blood work looked okay,but the biopsy isn't normal. He is calling it morphea....but what and how to treat? He seems stumped. I am to go next week to see him and many other doctors at the medical school to see if anyone has seen this before. He can't tell me if it can be stopped or how much more damage will be done. He said it was critical or serious... I was too stressed to hear which. I hope I will be able to walk by then it seems to be progressing so fast. Any suggestions for coping or for knowing about this? Thanks for caring and the help. Annie B.

#7 Shelley Ensz

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Posted 11 December 2009 - 02:06 PM

Hi Annie B,

Welcome to Sclero Forums!

I'm not a doctor, in fact I have no medical training at all, but your description sounds very unusual to me, for any form of scleroderma. If they are suspecting scleroderma you really should be seen by a scleroderma expert right away. There's a chance this could be something else, only because I've never heard of this exact description for either systemic or localized (morphea) scleroderma before.

I don't know, for sure, where to move your thread right now. It's a quandary because the symptoms you describe are so unusual for scleroderma, so there's a chance it might turn out to be something else. Just to be on the safe side, I think we'll have you graduate from the Welcome forum into the Undiagnosed forum, to give your doctors some more time to sort things out. So, for your next post, you can continue with this thread or start any new topic in the Undiagnosed forum.

But don't worry, we all hang around the Undiagnosed forum as well, since many of us spent years in diagnostic limbo, or went through a series of diagnosis/undiagnosis/diagnosis and so forth, or experience new symptoms that are unaccounted for as yet. Many of us have found that doctors can mention a lot of diagnostic ideas in the initial phases, before landing on something that actually sticks.

I hope you get some answers and hopefully even a treatment, as well. Hang in there!
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.

#8 Jeannie McClelland

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Posted 12 December 2009 - 05:23 AM

Hi AnnieB,

Welcome to the Forum. It sounds like you are having a really rough time.

I'd second what Shelley said in her last post about doctors mentioning diagnostic possibilities during the initial phases. They go through a process called differential diagnosis, which is comparing a patient's test results and clinical presentation against lists of diseases and their symptoms. It's a fairly systematic process of elimination. Sometimes doctors think out loud and the patient gets to hear all sorts of disease names that might really be well down on the list of possibles.

As it happens, we had a good newsarticle recently. It's Towards the Early Diagnosis of Scleroderma and is a good guide for both patients and practitioners. I thought it was especially worth reading. One of the points to be aware of is the odds of having scleroderma: 20 cases per 1,000,000 people = 2 cases per 100,000 people = 0.002% chance!

I'm also no doctor, but I have to wonder if your doctors have investigated the possibility of some kind of toxic chemical exposure. The blistering and bleeding certainly sound like that.

I hope you get a good diagnosis soon and some relief from your symptoms.

Best wishes,
Jeannie McClelland
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#9 annie b

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Posted 12 December 2009 - 07:34 AM

I tried to add a reply, but can't find it posted anywhere - I am having quite a time finding my way around the site. Did a reply come? I used the reply in the box with the comments made by someone that replied to me. I can't find that response to me now. I do so welcome your thoughts and am wondering even more if I am misdiagnosed. I thought it was a B6 overdose back in May. The symptoms matched, but then they matched for an allergic reaction to a banana and mango smoothie - my mouth blistered and my throat closed down. The doctors have not been interested in either event. They weren't interested in me finding I am gluten intolerant. I have so many allergies that it seems you are on the right track saying it is likely not morphea. I have had the hives for about five years. too - seems the symptoms all must relate, but for what?
Thanks to all for your support and help.
Annie B

#10 annie b

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Posted 18 December 2009 - 10:52 AM

Yesterday I drove nearly 100 miles to be seen by at least 40 dermatology students and doctors. of all ages, male and females at a medical school. They concluded, as the doctor the previous week had, that I have Generalized Scleroderma that is advancing very quickly. I am to have MRI of my arms this week. I will see a lymphaderma therapist next Wednesday.

I can't find what that is for; I thought it would be therapy for movement; I am becoming very disabled and walking is painful, but I plan to push myself and not give in... is that okay? I had more biopsies and have been put on methotrexate, prednisone and folic acid.

As you can imagine I am feeling very depressed. I did agree to be in a study going on by the medical school and signed up for it; I will begin working with them next week. It is suggested that my skin is too thick or the problem too deep (already, maybe I misunderstood) for the light treatments at this time. They are concerned that this has moved so quickly (since May) that they must move quickly so I don't lose any more mobility. Do any of you have suggestions as to what I need to do... for myself? I am cleaning out my cupboards.

Thank for your help and advice, it is so appreciated.

Annie B

#11 Shelley Ensz

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Posted 18 December 2009 - 11:31 AM

Hi Annie,

I'm sorry you have Generalized Morphea and send my best wishes to you.

I have moved this thread from the Undiagnosed Forum to the Main Forum.

Rather than sink into depression at this point, you might want to consider getting excited, because at least now they know what you are dealing with, you are able to start treatments that might make it better, and your care is, finally, in more capable hands.

Plus, you have all of us to meet now! Surely that is a bit of a day brightener, isn't it?

As for cleaning out the cupboards, that is always a good thing to do. They say even cleaning a closet raises our spirits more than watching TV. It's a way to take out frustrations while also achieving something that will make you even happier each time you open the cupboards. So, I'd say you are doing exactly the right thing, by sharing your situation with us, expressing how you are feeling, and cleaning out the cupboards, as well. Altogether, that's a better plan than most of us had when we were first diagnosed, so I think you should stick with it.

Here are some "Sorry but Congratulations" flowers for your diagnosis (at long last): :flowers:
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.

#12 Peggy

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Posted 18 December 2009 - 12:17 PM

I just wanted to let you know that you are not alone with the pain in the legs. I have horrific pain in my legs and arms. My disease started out with peripheral neuorpathy of my hands and feet, where they first tingled and then went numb. The numbness continued up to my knees and I have permanent muscle damage. This has now also turned into constant pain in my legs and arms. It first started out as stabbing pain in random spots of my arms or legs like being stabbed with a knife from the inside/out. Now the pain is constant. I just had additional blood work done last week and unfortunately the muscle numbers aren't elevated so my rheumatologist just doesn't know what to do to help with this other than the pain patch that I wear and the oral pain meds. I have tried IVIG and that didn't do anything for the pain. I can't take prednisone and I have already done the cyclophosphamide and can't do that either. I am currently on Methotrexate and that doesn't seem to be doing anything either. I've also done the neurotin and lyrica which neither helped. In addition to the Methotrexate I am also on Cellcept which has helped with the skin issues and hopefully is helping with my lungs.

I have also been diagnosed with Polymyositis so I have no idea if it's the poly or the sclero that is causing this pain. I really don't care and just wish there was something out there that would help. Today is a good day and I really try to recognize the "good" days. I know my family is so frustrated watching my suffer and feel so helpless. I am fortunate to have a doctor who hails from John Hopkins so I know I'm in very good hands. Unfortunately what this disease is doing to me there just isn't much out there to help.

I really think if you're able to stay on the prednisone that it should help you. I have a friend who just went on this again (she's been on it before) and within days her pain was gone and her energy levels were up. I so wish I could take it but I was found to be allergic to it.

The best thing you can do now that you have a diagnosis is to make sure you deal with doctors who really know what Scleroderma is and know how to deal with it and treat it. There are so many things that this disease can do and it can change so fast that your medical caretakers really need to stay on top of it for you.

You have come to the right place to come to vent, share, and learn. This is where I first came when I was diagnosed and I was so very fortunate to have some members reach out to me and have helped me immensely.

I look forward to hearing more from you and I so hope you are getting some relief from the pain. I know what you are going through and I know how hard it is.

Warm hugs,
Peggy



#13 annie b

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Posted 19 December 2009 - 12:12 PM

Dear Peggy,

Thank you so much for sharing your story with me; I feel really so bad about how you are suffering; it makes me feel I have it pretty good. As I piece my story together I can look back and now see how it was progressing for the past 10 - 15 years., maybe. It is so scary that when it finally gets going it moves so quickly. Fortunately I am going to a medical school for care in Dallas where research is on going and the doctors moved so quickly. I had medicines in me within six hours after seeing the doctors. I am still waiting for my G.P. to respond to their request for the MRI in my arms ~ Had I known the warning signs what a difference it all would have made, but probably so for so many. It seems unforgivable two other dermatologists missed it in me and a third refused to see me for they only treated external problems!!! There are times when living in a big city, or near, pays off I guess. We are two hours away, but getting the help needed to get this into remission, if that is possible, will be good. And I am so lucky with all my allergies I can take the medications. I can't imagine not being able to be without the pain some hours of the day. I work until 1:00AM some nights so I drop into my chair exhausted enough to sleep a couple to four hours. I have not slept more than four in 30 years so that part isn't as bad as would be for some. Last night I had a dream, I almost never sleep long enough to have them, and in it I was able to FEEL. I have never been aware of feeling, but I was light and not in pain, able to run - I couldn't tell if I was younger or older. Do you dream in feeling? I am a studio artist that works with small metal sculptures (welding and soldering) so maybe my brain produced that surreal story for me~ it was good and I wish that for you too so you can be free at least in a dream.

I was glad to read you have an avocate from Johns Hopkins; that must help a lot. I have four nurse friends, on line, that have been very supportive and helpful too by explaining the medical terms. I am quite amazed with all the research going on.

Thank you so much for sharing with me. I wish you some new answers to your needs and a much easier 2010.

I send you a gentle healing hug and wish you peace,
Annie B

#14 Peggy

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Posted 20 December 2009 - 03:01 PM

I just wanted to thank you for your very kind words. It's terrible when a person as sweet as you gets afflicted with such a terrible disease. I am amazed you are still able to work and I so envy you for that. I couldn't hold down a job now and I am so grateful and thankful that I was able to get disability. I just wanted you to know that your kind words meant so much. Your true compassion was so apparent by your words and meant a great deal to me. Thank you and I wish you Happy Holidays and I hope that the year 2010 will be a year where you get all the medical attention to you need to battle this disease.

Warm hugs,
Peggy

#15 annie b

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Posted 24 December 2009 - 08:03 AM

Dear Peggy,

I am so un computer skilled so finding my way back to this page has been a challenge. You are most welcome for any words of compassion that I shared with you. I just hate knowing all the pain and stress all of us are going through and not being able to help at all - not even ideas as to what would work. I am usually such a good problem solver. I have been in terrible leg pain with the constant burning and peeling and I discovered, last night while waiting for medicines at the drug store, some diabetic cream... it really put the fire out!!! I was amazed. I wonder why my doctor didn't mention it? I pass this on to those that might be green like me and need to try it. I have been using the diabetic socks too and they are wonderful. I tried a moist heating pad on my legs for an hour and that helped. I think the doctors only see the disease, not the person~

We drove 200 miles one way to see the doctors yesterday and to have my first physical therapy treatment, but their computers were down so it didn't happen!!! The doctors are checking to see if there is a therapist in our area for I need to go at least three times a week for the first few weeks. If they can get me more limber then maybe the light treatment will help stop the constriction. I am hopeful, but new symptoms seem to develop every week so this is a rush against time. I am trying to be positive and up beat espcially after seeing folks with missing arms, broken faces and or cut off body parts; I truly am lucky - so much sadness out there. Some one brought me a back pack hiking chair that I can open anywhere and sit, what a great idea. This will give me courage to venture out where otherwise I might not make it back without a place to sit a bit. My medications have been boosted to four pills, will add more every few weeks and then get me off the prednisone so at least I have some medical help taking place. Sorry to go on like this, but it is so nice having someone to talk to - someone that knows the pain and fear. Do you think some moist heat would help you?

I send you warm, gentle hugs and wishes for a very peaceful and happy holidays. May the new year bring us and others better health and days full of play and joy. My four footed friends sure are hanging in there with me - unconditional love is so great.

Annie B

#16 annie b

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Posted 24 December 2009 - 06:08 PM

Hi,

I am trying to learn my way around this site and how to use the computer to be in touch other than by e-mail. Self taught computer/typist and lots to learn.

I have finally had a diagnosis and will begin a type of physical therapy soon for this is progressing quickly. I am very constricted in my lower legs and feet, the ankles hurt a lot. I was told I would be getting massages and exercises to do, seems there is something else but I can't recall. I will have an MRI on the 30th to check my arms for they also show signs of it progressing in them below the elbows (where I had polio as a kid) so I am not surprised that weak area is hit again. I am having pulsating pain in my back (as of this week) sure hope this isn't a new symptom. I can't have the ultra violet lite treatments for the constriction has gone so deep, but with the massage it may break it up enough to try it. The place to go for such treatments is a 2 hour drive in very heavy traffic so I am not sure how or if this will work out. One day at a time. I am on predisone and another drug that I will ease into if the liver doesn't get destroyed in the process and then be weaned off the predisone. What are you doing for your treatments? I guess we learn a lot from each other. I have found a diabetic cream that adds oils back into my very dried out and burned skin on my legs. Do you have any hints or suggestions for how to deal with this? I take pain pills throughout the day, but with the new meds I have been able to cut back. I am into my 9th month of dealing with this, but can tell by looking back it has been in progress for several years and then all of a sudden took off at 100mph last May.

Thank you for writing to me; I so appreciate the support and want to support you and others too, seems like a sisterhood.
I wish you a pain free holiday.

Your new friend Annie B

#17 eah

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Posted 26 December 2009 - 05:25 PM

Annie,

I have burning, numbness, pins/needles feelings. Try a neurologist. My turned out to be small fiber neuropathy that affected not only legs/arms, but my autonomic nervous system. They think it was from sjogrens secondary to scleroderma. It was detected by skin biopsy not an emg. I hope this helps.
ANN

#18 annie b

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Posted 27 December 2009 - 11:51 AM

Thank you for the suggestion. I will ask my dr. I was supposed to see a neurologist and I was canceled.I sit here and my hands go to sleep. The dermatologist thinks I have two things going on - the poison ivy like blistering has to be something else maybe caused by very low blood pressure and it could be the numbing too. I never thought much about that. Getting all the puzzle pieces together sure is going to help. And someone sent me a link to a support group that meets once a mo.and it is only 25 -30 miles away! Joy... I am so sorry that you have to deal with such yourself. I tried some Melatonin last night and had nearly 5 hrs. of sleep (in a chair) in a row :) A first night of sleep in a long time. I bought a computer scrabble game and played until the wee hrs. - lots of new ways to enjoy life~

#19 annie b

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Posted 05 January 2010 - 03:42 PM

I have two questions to you; I don't think it appropriate to post but don't know where to find truth and want it to be~

One, will peanut oil help with my bone dry skin? I have tried so many things and nothing works.

Also, should I not eat from the Night Shade family of foods due to the scleroderma? I love the plants in the Night Shade family and giving the up is very hard, but I would do anything to help my body heal. They are the potatoes, tomatoes,peppers, egg plant etc.

Oh, and I am having such a time finding calcium that doesn't cause nausea with my other drugs such as the prednisone and the methotrexate. Is this a common problem? My dr. is 75 miles away and not very available for routine questions; I will see him on the 12th but that is a long time to wait. If you are comfortable to help me with these questions I thank you now and so appreciate what you can share. I realize you are not a dr. but you have so much experience and knowledge.
In much appreciation for you help.
Annie B

#20 janey

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Posted 05 January 2010 - 04:47 PM

Annie,
Dry, itchy skin is a big problem for many of us. I have tried many things with very few successes. We do have a page on dry skin (xerosis) that offers suggestions. For me I have found that an oatmeal based lotion works best, but others have found it ineffective.

In reference to the nightshade vegetables, again - it is a personal thing. This article from About.com on Rheumatoid Arthritis and nightshade vegetables has some good information. Apparently, there have been no scientific studies to show that any one food or groups of food affect arthritis such as RA or scleroderma. Personally, I feel that one's dietary issues are a personal thing. For example, I have had to greatly reduce my consumption of dairy. For me it causes post nasal drip that stirs up reflex and increases my nagging cough. You might check out our section on Diet and Scleroderma. It discusses good and bad diets, good and bad foods for scleroderma.

I use to take methotrexate and my rheumatologist told me to spread the pills out between meals on the day of the week that I take them. By doing this, it eliminated the nausea problem. You might give that a try.

Hope this helps.
Janey Willis
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