Hello Friends,
It's been a hectic and exhausting two weeks.
Yesterday, I completed the in-person part of my neuropsyche eval. The tester said she would call me with questions after she reviewed all of my medical records. I provided the last 7 years worth of health history including the first hints of AI seven years ago that I now believe was Sjogrens rearing its head but was tested for almost everything except Sjogrens.
I don't really know what to think or what to expect as far as what their recommendation will be for me. It's a little scary and I try not to think too much about everything that is going on right now, ie., chronic visits to doctor and SSDI. I am sure SSA is waiting for all of the info to come in before making a decision on my claim; plus, there is still other testing (MRI) to be done. I am exhausted with appointments, but am patiently waiting because I know everything will help to build my disability case.
Health wise, I've had these heart attack episodes for the last two days. I've had them before and went to ER and they found nothing even after a stress test. The EKG said I had inverted T-waves, but they say probably "normal for me". When I have these episodes, I also have what I call internal tremors, or nerve vibrations inside my body. They wreak havoc and bring pain and weakness to my entire body.
It's scary because how do I know if what I am feeling is Sjogrens or something else.
Just scary!
PP
Powder Puff
You're right, that does sound scary! I don't have any words of wisdom, but just want to let you know I have read your post.
Hugs
Kathyx
Same here PP.
We're all in your corner, hoping for some resolution and calm for you!
Hugs, Elaine
Powderpuff
I experience the same symptoms. Chest pain and shakiness. I have been to the md and ER but nothing is ever found wrong with my heart. Now when it hits I have to remind myself that I am not having a heart attack and that I have to ride it out. One of these days there will really be something wrong with my heart and I will ignore it because of prior history.
I am about to start testing to see if it is myositis. I understand how important it is to have answers. Good luck with the results on the neuro eval.
Thank you all for the replies.
Cassi307, I'm thinking the same with my heart symptoms. My mother had a heart attack 2 months ago, (her fourth), my brother had two and he's only 53.
I still swallow a low dose aspirin everyday, just in case.
PP
Hi powderpuff - sorry to hear about your heart scares, I too have experienced them and they only found PVCs which they say are somewhat "normal" so I am with you - when do you know it is something more than sjogrens? I do not know the answer but I am sending positive thoughts and prayers your way that you get some answers and some relief from your symptoms.
Hugs
Powderpuff, I think you should change your screen name to powerpuff! You have pushed yourself through so much and hung in there. You really deserve the best in life for all you have been through.
Please keep us apprised of how your disability is going, I'm still waiting on mine too, I think I'll call tomorrow
Lolo
Isn't it so frustrating when we have scary symptoms and yet when we go to the doctor we are just fine? My dad went through that for a couple of years, telling his doctor that he kept having these episodes of chest pain and shortness of breath and the doctor would do an EKG and everything was fine. Then one day he had one of those episodes while he was driving and so he drove straight to his doctor's office, walked in and said "I'm having one of these chest pain episodes right now". So they put him right in a room and the doctor and nurses were checking everything and lo and behold he was having a heart attack! They sent him by ambulance to the hospital in town and they in turn sent him to a bigger city with a heart hospital. They did a cardiac cath and found that two of his arteries were completely blocked. A few weeks later he had a double bypass.
Moral to the story: Keep pushing your doctor. Do you have a cardiologist? If not, get one. Never assume that any kind of symptoms are caused by Sjogren's. Even if they are, they still need to be checked out and treated.
Good luck and I hope you get this figured out soon.
Karen R
Quote from: lolokonoki on October 08, 2013, 09:14:10 PM
Powderpuff, I think you should change your screen name to powerpuff! You have pushed yourself through so much and hung in there. You really deserve the best in life for all you have been through.
Please keep us apprised of how your disability is going, I'm still waiting on mine too, I think I'll call tomorrow
Lolo
Social Security sent me a letter yesterday threatening to deny my claim. They said they never received the function report and work history forms supposedly faxed to them on 8/20 by Allsup. So I'm assuming DDS hasn't touched my file in all this time? :-[
My mistake for thinking Allsup would follow-up with DDS after faxing the form, afterall they are supposed to be professionals.
I'm wishing for the best and hoping that I can still get disability without doctors support if it comes to that. At this point, I do not believe any of my doctors will support me. The rheumy seemed very irritated when I stated I filed for disability and he changed the subject quickly. Not a good sign there.
The psychiatrist thinks Cymbalta is the best thing since sliced bread and I will do a 360 degree turn and get back to my life as it was. My psyche is a person who suffers from AI as well (MS). She seemed clueless to be honest with you. Everyone is different. It is not that easy to just pick up and get back to your life after suffering a year and a half in constant pain. I've lost hope many times because of pain, and lack of medical care. The uncertainty is sometimes unbearable. My psyche doesn't get it that this disease has changed me, how I think, react, connect with people, and feel about my life.
Maybe I will feel differently in the future, but I don't know when that will be and I can only live each day as it comes and take only one day at a time. Looking too far beyond the present is overwhelming and stressful.
PP
Did you contact Allsup?
Quote from: Velcro on October 10, 2013, 11:03:23 AM
Did you contact Allsup?
I contacted Allsup as soon as I received the letter. They contacted me this morning to say they faxed the forms to DDS the same day we completed. Not sure what DDS did with them. I have to be more proactive from here on out.
PP,
If you continue to have problems, get an attorney.
Good luck,
Shade :)
Alternatively,you could snail mail the forms registered, return receipt. Interestingly, they tend to get the forms under those circumstances.
You could save yourself thousands of dollars by trying that first before you get an attorney.
Sharon