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A long update


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#1 gemjar

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Posted 12 March 2008 - 12:48 PM

I have been wanting to update you, but have been too overwhelmed to know where to start. Well I had my first appointment with the Rhuematologist and it didn't go as well as I'd hoped. In actual fact it felt like I was having a councelling session!! I feel like I need to share some personal things for you to get a clear picture on how this happened. So here goes........

I am 38yrs old and have 2 children. My 12yr old daughter has Asperger Syndrome(autism spectrum disorder)and ad/hd. My 6yr old son has Autism. I have Bipolar Disorder which is controlled through medications and councelling. 13yrs ago we lost our first son when I was 6 1/2 mths pregnant...also at the same time as my hubby was having major surgery for a malignant melanoma.

While I accept the hurdles we've had to face, I won't deny life with 2 special needs children, while trying to look after my own mental health, is quite stressful and exhausting. What I hate though is that as soon as the rheumatologist started to find out these things(and I understand they have to get a picture of our lives) but I felt like it became a black cloud hanging over me, hindering the true reason why I was there. He asked me many questions and sme he wanted specific answers to, which I was unable to give him eg: which part of my foot is sore in the morning and which fingers had pins and needles in them during the night. I gave him my list which he looked at breifly at the end of my appointment. He believes I have oesteoarthritis and not RA which is what I was referred for. He said that my fingers were flexible when he bent them during the examination. I asked if the swelling was a symptom of OA which he didn't answer. He said that I was under extreme stress and that stress works it's way out in the body in many ways. I asked him if he thought this was all in my head and he said no he believed I felt this pain, but once again the "stress" word was used. I ended up sitting there crying like a baby and left without asking him the many things I wanted to. He is sending me for xrays of the hands and feet, as well as blood tests. I go back to see him in April and this time I want to be more prepared than before.

So I have a few questions again. Do I just come straight out and ask him about scleroderma, or will this get his back up? Also even though my fingers do not straighten on their own, I can make then straight if I lay them on a table or if I use my other hand to bend them. Is this something you couldn't do with sclero? my arms and fingers go numb and have pins/needles in them at night which constantly wakes me up, no matter what position I lay. The pinky and ring fingers are the ones which I notice the p&n in most (even during the day) My fingers are mostly swollen from the middle knuckle down to the nail, and by night are all wrinked unless I have been cleaning etc during the day they are really bad. I didn't get a chance to tell him how my face is tight in the morning until I get the muscles working, my smile is tight and comletely different. Also in this last week my muscles are aching much more, that it takes so much energy to lift my arms to fold clothes and to get out of a chair if I've been sitting a while.

I'm sure I could keep going, but think I have rambled on enough. I would really appreciate some thoughts and advice on how to go about this next appointment if all tests/xrays show nothing. Also your thought on the symptoms I have mentioned...do they ring a bell?

Look forward to your replies, I'm feeling at quite a loss at the moment :(

Warmly,
Karen

#2 janey

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Posted 12 March 2008 - 04:52 PM

Karen,
The whole process of diagnosis, regardless of the disease, can be quite frustrating. With scleroderma it's even worse since it's so very hard to diagnose. Your frustration is certainly justified. We've all been there.

Just some thoughts on your symptoms that I can relate to - The pin/needles in your fingers could be carpal tunnel. That's how my carpal felt. Eventually, fingers and forearms would get numb. Carpal can be tested for.
I can force my fingers straight with my other hand, but as soon as I let go, the knuckle bends again. My knuckles have a permanent bend so I can't lay them flat on the table. Thank goodness it's a slight bend and doesn't effect my hand function.
Your symptoms that I relate to the most are your difficulty in getting up out of a chair and lifting your arms up. Polymyositis is another connective tissue disease like scleroderma and can cause such symptoms. (I have both poly and sclero). Poly affects the muscles causing weakness and fatigue. Poly is usually diagnosed with a simple blood test (CPK or CK) and then a muscle biopsy. You might just ask you doctor about connective tissue diseases and work from there.

It's encouraging that you have a doctor that understands the difference between your emotionally and physical pain. That's a good sign for any doctor. Please let us know how your next appointment goes and what you find out.

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)

#3 ez62

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Posted 13 March 2008 - 01:57 AM

Hi karen,
I usually just lurk but your post struck a nerve with me. I have a 3.5 year old son who has been diagnosed with moderate/severe autism, and I myself am kinda in the same boat you are, very strange symptoms that keep evolving but no diagnosis as of yet. My left hand is becoming more swollen and resistant to use with each day.Like you, I feel my smile is very different, at rest my mouth actually looks crooked to me. I've had a burning tingling sensation in that area for a year now.
My son spent 5 days in the hospital last month and it really knocked the wind out of my sails. Very scary when you have a child who can't communicate what is wrong or how badly he was feeling. Its like we are so busy dealing with our special needs children that we put our own health on the back burner. I can really relate and sympathize. I am seeing a new general practitioner in April, hoping I will get some more answers. best of luck to you,Eileen

#4 Peggy

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Posted 13 March 2008 - 06:18 AM

Before I actually got the diagnosis of sclero my disease started with my hands and feet going numb and tingling. They tried for a year to figure out what was going on until I finally got referred to a rheumatologist doctor and she took one look at me and said she knew what I had and did the biopsies and bam= I was diagnosed with sclero/sjogren's/raynauds/and I still have the muscle pain and numbness. I hope this helps somewhat but the best thing is to get the biopsies to see if it's sclero.

Warm hugs.

Peggy

#5 Fictionite

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Posted 14 March 2008 - 06:27 AM

Hey, I have been waiting for your update, and I'm so glad you wrote back to us. I'm so sorry about everything you're experiencing on top of your medical condition. You are obviously an incredibly strong person, and I know that you will get through this.

I know what it's like to have one ongoing "life" crisis after another without any break. I think it's common knowledge that stress can lead to various medical conditions; however, I believe that is beside the point when there are serious physical issues to address/diagnose/treat. And, having a mental health issue does not always mean that your physical symtoms are directly related.

What I tried to do was keep the conversation directed at my physical symptoms. I still answered the "mental health" questions, but I tried to stay calm and kept my answers brief in order to direct the focus onto my physical symptoms instead. We both know that knowing something is wrong, but not knowing what it is only leads to more stress. Something else you might try before your next appointment... Try to avoid stressful situations before seeing the doctor. If that's impossible, then arrive early and sit in your car for a bit. Do whatever kind of "stress management" techniques that work for you - slow, deep breathing or listening to music. Concentrate on the items you want to talk about, or go over your list. Think about how you're going to describe your symptoms. I know this sounds corny, but you have more than your fair share of distractions. This might get your mind focused so that you can express yourself the way you want to.

If you return to this doctor, maybe you could mention something about how you want to discuss the physical symptoms that you weren't able to talk about at the last appointment. If tests or biopsies aren't ordered, then you might consider a new doctor. I know it's not fun to go through this process over and over (boy, do I know that!), but sometimes that's what it takes.

I wish you the best. Please keep us posted. ~LeAnn

#6 gemjar

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Posted 15 March 2008 - 11:44 AM

Thank you for your replies Peggy and Janey......i was at the doctor again this week. The pins and needles were so severe in my left arm during the night, that my whole arm felt like it was on fire. This was 3 nights ago and it has left me with numbness in that arm. My dr was away and the one I seen said something about nerve compression and used the word 'neuropathy'. He also mentioned that in my file, 'fibromyalgia' was referred to. I am going back to see my doctor in 2 days, so hopefully I will get some more answers then. At the moment I feel like cutting off my left arm, it just doesn't feel like my own! Oh... and he doesn't think it's carpal tunnel as my tingling/numbness is in the 2 small fingers, apparently CT is in the thumb and 2 main fingers (different nerves) Thank you for shedding a new light on my rheumatologist, I hadn't really thought of him that way, but I can see what you mean :)

Eileen....thanks for responding. I don't have to tell you how hard life with an autistic child is...you know! This is off topic, but I just want to say that with the right support, education and an abundance of faith, miracles do happen! I hope you get some answers too for your symptoms.

Hi Le-Ann...what an encouraging response you've given me, so uplifting and just what I need:) Your advice on relaxation before the appointment is so spot on. I was not in the right frame of mind to begin with....i'd had issues with my 12yr old that week that had me more stressed than usual and had forgotton my meds more than once that week including the day we travelled (7hrs drive) then I napped on and off in the waiting room for over an hour until my turn. As a result I had quite a 'brain fog' when I went in. Not a great start, but on the positive he got to see the 'real' me! I will take your advice next time and try to be better prepared.

Thanks again everyone, sending you warm hugs.

Karen