[connie mitten]

Hello Again,
Last march My fingers started going white and limp, No circulation at all. That is what actually finally convinced me and the doc that I had more symptoms of Lupus, long story short, now this is the second time that I have had to deal with my fingers doing this. I don't actually understand much about the disease, the only symptom so far is the numb and white fingers. The rumy said it was Raynauds, I am just wondering what else to look for as far as Raynauds. Today was the first day this season that it happened again, I was watering my flowers when my fingers got wet, and cold, and my pinky's started going white, and numb. I know that I will need to wear gloves, and use hand warmers. I am just really scared about what it next???? This is why I went out of work last March due to the same symptoms. The doc is actually thinking that I have MCTD....really scary, but I guess I should just take one symptom at a time.....Thanks for all your help here on this site.....it has actually been a life savor. I think I only come here at my most desperate times., then there is noone to turn too...
Connie

 

[cad]

Hi Connie,
sorry to hear that you are so concerned.
I think you really are doing all you can in terms raynauds by keeping your hands warm etc.
I have had raynauds for many years now and i've just learned that to except that it there and try to follow the medical advice.
I have MCTD and yes raynauds is associated with this along woth other ctd's
It's good that your rheumy is looking into this. Sometimes raynauds can occur many years before other symptoms of ctd appear, this happened in my case. And sometimes raynauds can be a primary disease which is not associated with a ctd.
Do you have any other symptoms? Has your rheumy done blood tests? Do you know the results?

Good luck with things and try not to worry yourself too much

Take Care

Cassie


Self

 

[Clare.T]

Hello Connie

I am sorry to hear you are so distressed again, and apparently no further forward than you were several months ago. You are not alone in thinking for some strange reason that a diagnosis of MCTD is somehow worse than an SLE diagnosis. MCTD is the name given to a particular set of symptoms, that's all.

It says nothing about how the disease will progress if it does at all. It is as variable as SLE as regards how people are affected and how severely. In fact people with an MCTD diagnosis tend to have a better prognosis than those with an SLE diagnosis.

You really need to start taking care of yourself. What's all this about not taking your medicines yet?
An essential part of Raynaud's treatment is self management. You can get lots of tips here on practical tips for dealing with it. Plenty of people with an SLE diagnosis have Raynaud's too. Stress reduction is very important as it is universally agreed that it is worsened by high stress levels. Stress is hard to avoid of course, impossible in fact, but there are many proven ways of lessening its very harmful impact on our bodies ranging from simple breathing exercises to quite intense programmes.

I am familiar with that horrible paralysed feeling that high anxiety levels produce, going round and round in circles of dismal thoughts. Anxiety is linked with depression so consider if you would be helped by an antidepressant to tide you over and encourage a more positive frame of mind. Many of us take anti depressants as depression can be a symptom of disease as well of course reactive to the problems being unwell causes in everyday life. Anxiety seems also to be associated with lupus.

Here's to happier days very soon

Hugs
Clare

 

[connie mitten]

Raynauds

Thankyou Cad and Clare for your support. I have not been to the doc yet because it just happened. That is why I came here, too find out what too do. Should I call the MD OR the Rumy. I have never been medicated for Raynauds, I did read that certain meds lower your bp and I already have a normal bp of around 90/40. I am going to make an appointment for this symptom, any advice on which medicine concidering my low B/P. As far as the diagnoses I have not been officially diagnosed with anything. The Rumy is still investigating all my blood work. So far this what they found. + ANA, titer is 640, sed rate is 125, pattern is Centromere. Symptoms are, joint pain from back of neck to toes, elbows ache, and ankles, and knees.....no rumatoid arthritis found. Leukaderma on face, red chest, sometimes purple, red streak down the side of my neck that is like sun burn, severe sun poison in the summer. All over chest and arms and back. Now this raynauds, I am wondering what will it take too diagnose me. I feel so sick with no answers. He just keeps saying possible MCTD, which I thought was different diseases not symptoms, he said my pattern says centromere which makes him think scleraderma, and the ana and all the symptoms are making him think Lupus. Isn't MCTD a few diseases, which would mean that I have lupus, and scleraderma??? He said the Raynauds is secondary to whatever is wrong with me. Anyway, my last appt. my sed rate was 125 he just ordered another test to be done, I am already on an antidepressant, I have been dealing with Pysch issues all my life.....This just makes it all the more worse....I just wish I knew what was wrong with me, am I dying??????

 

[cad]

Hi Connie,
I am so sorry that you are going through all of this. The thing thats sticks out to me is why has your doc not put on some medication, with and esr taht high and with all your other symptoms. I am not a doc but I think you need to contact the rheumies office and request some appropriate meds, see if you can get your gp on side with this.
In terms of the centromere antibody it is more common in crest syndrome or systemic sclerosois than in scleroderma, well systemic sclerorsis/ CREST is actually the systemic form of scleroderma. Very complicated sorry.
I have found a link that gives more info. You can follow these pages thnrough as there is quite alot of info over a few pages.

http://www.mayoclinic.com/health/crest-syndrome/DS00580

MCTD can only be diagnosed with the presence of the anti Rnp antibody and a speckled pattern ANA, these are very specific criteria.
The really important thing is try not to worry. I know its easier said than done and actually i think the worry is compounded by not a diagnosis, i think that atleast if you know whats going on and have a plan for your treatment it can make things easier to put straight in your head.
My gp had to demand a diagnosis and a treatment plan from my rheumy as i had been left dangling too.
I think if you can find the strength you should start with the gp tell him what you have found out on your own and see how he responds, i think you should definately be on some kind of disease modifying drug.

I really hope things work out and i hope i haven't given you too much info.

:there: :hugbetter:

Take Good Care of yourself
Cassie

 

[connie mitten]

Thank you so much....Cad !!!

Thank you for responding, I look for it all day, sorry for the high anxiety. Yes I agree, I need to get a better mD though. She always just says and I will quote her "Deal with it". The rumy see's me every 3 months and just shakes head saying " I think it is MCTD, he was saying Lupus, like I said he saw that my sed rate was 125, I tell him that I am so sick, I told him about what happened to me last march, and he really did not say much. It has only happened once to me. Last March when I said that the raynauds started, I was also in bed for 3 weeks, my bone in the back of my neck was aching, let's say Throbbing, all the way down to my toes, my elbow, my shoulders, my hip, and knees, even my ankles were throbbing. I really think it was what this site calls a Flare up. I know that you can not diagnose me, but what is your opinion? + ana, titer 640, centromere pattern, sed rate so high, and the thing that happened in march, which I think was a flare. Now my fingers are going numb. So you are saying get a good md, to make sure that the rumy I am seeing is taking care of me? And also should I go too the Md or a rumy for my fingers turning white, and going dead. No one has even diagnosed me with Raynauds yet. I am out of work now again, I am an LPN, and know that I am a long way off from disability, but I am having financial difficulty also from not helping my husband work.....I just feel so sick, and don't know what too do next. Thank you for your support, I used to be the Rock in my family, I can help you also, I am just so weak right now, and confused, I usually give support, don't normally need it. I do hope that you are feeling ok, as I am learing that emotionally this I think can kill you.....thanks again, I look forward to hearing from you again....
Connie