I had an appointment with my GP yesterday and was quite proud of how strong I was in the meeting. I went in there with the voice of a Facebook friend who had said to remember that the Doctor works for ME and that I had to be strong. I told him I would "try" and he said "Not try, do it, you have this".
I thought to myself as I sat in the waiting room "you know what? I DO have this". My whole attitude shifted, I felt myself grow calm but strong. This is my life and my health, I have to be my own advocate.
As I sat there waiting to be called in by the Doctor I listened to the conversation between two elderly women who were also waiting. I tried so hard not to laugh out loud (yes, actually LOL) when one said to the other "you better come in with me in case the Doctor tries to touch me somewhere he shouldn't". Bless her, I wonder if she realised how loud she was talking? I looked around the room and could see other people's mouths twitching as they tried (like me) to not chuckle.
I went in and told the Doctor that I was there to get the results from my blood work, in particular the ANA test, which looks for the Rheumatoid Factor (and is one of the screenings for Lupus). He looked at the screen and said it was negative. I asked him for the actual number because I told him that the surgery had called me to tell me that the RF came back elevated. He pulled up the screen and said it came back at a level of 21. I looked at the screen myself, which clearly said that a negative result was less than 20.
I asked him what that means and he said that mine was a "weak positive" which apparently is the same as a negative. Huh??? Isn't that like getting a faint blue line on a pregnancy test and only being a "little bit pregnant"?I explained to him that I am concerned about some of my symptoms being Lupus-like and with a result of 21 can I rule that out? He couldn't answer me, he just said to speak to my cardiologist and neurologist. So, I guess I just have to wait this one out some more but at least I have the number (for what good it is!!).
I have many symptoms that sound like Lupus (fatigue, aches & pains, Raynauds Syndrome, abdominal pain with nausea, a dodgy right kidney, palpitations, chest pains with shortness of breath as well as just feeling unwell) BUT I have the other symptoms that have led to my original MS diagnosis (via my brain MRI) such as numb limbs, a numb face, dizziness and vertigo, visual disturbances, black floaters in my eyes, ice cold sensations in my head, tingles and electrical storms in my entire body (as well at the fatigue, aches & pains that applies to both MS and Lupus). Confused? Yeah, me too!
The good thing is that at least this Doctor did say that if after seeing the specialists I don't get any definitive answers (I told him that I am not happy with my diagnosis being changed from MS back to Probable MS) that I could come back to him and we could decide where to go from there.
So if any of you have an knowledge or advice with that "weak positive = negative" thing please let me know so I can either scratch Lupus off my list or keep it in my top pocket as another avenue to explore if my Neurologist won't validate my original diagnosis and keeps me at Probable. I am not a "probable" type of chick, I am "yes" or "no" kind of girl. You would think that in this day and age of modern medicine it wouldn't be so bloody hard to get an answer.
So enough about me, how are YOU?
Good for you Karen, you stay strong & positive even though you probably feel so frustrated @ the moment. I have only just discovered your blog, & find it so interesting. I am now 63 yrs of age & have been on a similar journey for the last 20 yrs and was kept in the dark for many years because that was the way " they " used to operate. About 15 yrs ago I was finally given an MRI scan, staying with the same Neurologist who told me about 6mths before I had the scan that I had MS after initially being told I had trigeminal neuralgia, which caused me many years of pain.......medication, alternative therapies, which I had to pay for (which was a struggle) & other things had to be put on hold to pay for accupuncture to be given a go. Life has been a real struggle, yet I continued to hold down a part time job & raise two children ( one autistic ) who after time went into residential care. My children are now 39 & 36 yrs of age. I stayed in work until 4 yrs ago, when I retired on medical grounds ( looking back, should have left earlier, but for my mental state I wanted to continue to work for as long as possible) in the last 3 yrs I have had two very bad relapses, as I write I am three weeks into a bad one, where I am struggling to keep my balance & my mental state is getting very low. The only thing the MS nurse can suggest is steroids ......high dose for 3 days. I do not tolerate drugs that well at all, so am reluctant to expose my body to side effects of drugs as well as trying to cope with this wretched relapse !!! I have tried Rebif, but side effects were intolerable for me.....constant flu like symptoms. What next......I wonder. I am told to stay positive.......Good luck to you, me I have ranted enough Sheila xx
ReplyDeleteDear Sheila,
DeleteThank you for taking the time to share your story. I dont always get time to reply but I do read all of the comments left.
I too worry about the side effects of drugs. I dont even take a pill for a headache and only just got serious about my blood pressure tablets after my BP going waaay too high.
Good for you that you are trying to stay positive but I do understand that it isnt always easy to do so.
Good luck to you too, together we can all stay strong, right?
xx
Thanks for taking time to reply Karen, hope you are no worse @ moment. I have had a really bad today with the right leg, barely able to move. I did see my GP this morning & she does respect my decision about not going on the steroids. After all they did nothing to help me before & what is the point of trying to tolerate side effects, whilst trying to cope with the relapse. I have been crying a lot & feeling very sorry for myself, but then I stop & think I am not giving in to this wretched disease, because I do not want " IT " to win. ;-) Good luck to you too. Love & best wishes. Sheila xxx
DeleteI found ur Blogs ystrdy n have thoroughly enjoyed them. They have made me laugh, cry, sympathise and empathise. I got my MS diagnosis in Nov 11 after only 6 months, so feel lucky in that respect, but have been told its Primary Progressive n that there is nothing they can do, no meds or Occupational therapy. Keep up the good work, n I look forward to hearing you get some positive news even if its only a definative YES for MS, at least then you can move on. Fiona x x
ReplyDeleteHello Fiona,
DeleteI am so sorry to hear about your diagnosis. I honestly dont know what is worse, knowing or being in limbo. It is all a struggle. Is there nothing they can give you to slow down the progression or anything at all? :( I am glad you found me. Keep in touch.
Lots of love to you.
xx
Here is my best answer on your "weak positive" = negative issue. I had tons of blood work taken last year and had a few things come out of them that "flagged" but only by a little bit. The most notable one was my Hemoglobin levels (blood iron levels). They came back low and I was told that I was anemic. Now, I had given blood/platelets for the past year as much as I could, and so I know that the cutoff for giving blood was if your HGB levels were below a 12.5g/dL. I also know that my HGB levels vary between 12.5 and 14. Now the doctor report said that normal was at 14. That doesn't make sense though, because if under 14 is anemic then either the doctor or the blood people are wrong. I went with the doctor being more strict on the subject saying, "I'm so unanemic I can donate blood." I guess that's one of those "weak positives" that are just, there and could have meaning but most likely doesn't. I hope I didn't jumble my thoughts beyond comprehension. :/
ReplyDeleteIf I were you, I wouldn't worry too much about that specific result until you had to because it could worry you to the point of developing the symptoms without them really being there. The mind can act in weird ways. I say this with so much respect in the fact that, I'm trying to keep myself from falling back into the what-if game too. I am still waiting to hear when my next neuro appointment is. Whatever happens though, just know that you're not alone. :)
I was wrongly diagnosed with UDCTD suspect lupus a few yrs back...now i am under neurologist at the conquest in hastings as having cold sensations, burning, numbness,tingling and falling backwards when standing still(this is to add to the fatigue and general aches and pains over the last 8yrs. I am only 30 but my body and mind feel alot older. Being sucessful in my job has gone by the by...now i just want to be able to cope with normal day to day tasks.
ReplyDeleteThe best Dr if you think you may have Lupus is based at the louise coutes (???? spelling) department at guys and st thomas in london. Like you just want a firm diagnosis of something but have had neg blood tests for a variety of conditions. Just had a mri and now off to the Princess Royal in Haywards Heath on sat to have EMG and NCS they are a top neurology hospital.
Fingers crossed something....anything has shown up....love reading your blog and wish you answers too...good luck!