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Tests, tests, more test...where's the answers?

Feb 22, 2015 10:38 AM

I've not felt good or like myself since Thursday, although I've read everyone's msgs.

I saw the Neurologist Friday and the neuropsychologist didn't send him my psych test results, so still waiting on that. Now they're setting me up for a lumbar puncture to check for MS or other issues. He said even if its negative he may still refer me to an MS specialist north of us (2-3 he's). He said I have many symptoms of MS, more than I do lupus.

Also saw the rheumatologist, and she is running more blood tests. She also wants my dentist to do a biopsy of oral tissue because a rash inside my cheeks won't clear up and stay clear.

I'll be so glad if we can get answers of what it all is, instead of what it isn't!

Feb 22, 2015 10:59 AM

Could the rash inside your mouth be from medication?

Feb 22, 2015 11:37 AM

I first thought it was thrush and treated for that. But dentist suspect a fungus while the PCP suspects another issue. The rheumatologist said it should have been biopsied already because it showed up around December.

Feb 22, 2015 12:25 PM

Wow, sounds like each one is on a different page. Biopsy then?

Feb 22, 2015 1:01 PM

I'm headed to the neurologist on Wednesday and expecting extensive testing for MS. Brain MRI is Tuesday. I am hoping for answers too. Ms would be easier to accept than "I don't know."
Hope you get some answers soon too!

Feb 22, 2015 1:13 PM

@ Oregonhomestead, my thoughts too.

@ Aliya, I would rather know what I'm fighting than not, no matter what it is. At least by knowing you're no longer struggling with the unknown, and you can finally accept & move forward.

Feb 22, 2015 1:27 PM

Completely understand. The not knowing gets me crazy.

Feb 22, 2015 11:24 PM

FlappsyLady, I'm so sorry for your frustration and ongoing issues with no answers. I've had tests done throughout this journey through hellish pain and consistently told that I'm "normal" although, there always comes the extremely high inflammation readings in my blood work. I've also heard him say to me that my sed rate is off, I'm anemic and my potassium level is low... I've made certain to include things in my diet to rectify what I can, however, I understand the frustration of what you are dealing with. I'm praying for you, my friend. I'm with you, sending gentle hugs and holding your hand to support you through this.. Best wishes!! 💕

Feb 23, 2015 7:52 AM

Thanks AlwayZ. I needed the hugs!

Feb 23, 2015 8:04 AM

Good luck with the tests Flappy .... I can't get my GP (based in UK) to send me for any further test now that a Rheumy has diagnosed fibro. It's so frustrating. I hope that your issues are soon resolved and a proper diagnosis and a positive prognosis is given. Thinking of you x

Feb 24, 2015 5:32 AM

Thanks deena26. My rheumatologist ran more blood work and it show + for Sjogrens SSB, points toward mouth & eyes. She's sending me for a lip biopsy.

The neurologist is still waiting for the evaluation by the neuropsychologist. But he's also scheduling me for a lumbar puncture for MS or other possibilities. Not looking forward to that!

Feb 24, 2015 10:18 AM

Wow, FlappsyLady, you sure have been through the mill. I hope it doesn't come to that. You are in my prayers {{{{{{Hugz}}}}}} 💕

Feb 24, 2015 11:25 AM

Thanks AlwayZ. As bad as MS could be, there's always something worse. I'm hoping its not, but at least if it is then I know what exactly has been at the root of the past 5+ years of my life & what I'm fighting against. I get so tired & frustrated of not getting one thing dealt with before I get hit with something else. Sometimes I think "Enough! Just let me drop from a stroke or heart attack!", but then I remember... It'd be my luck neither one would kill me. Lol

Feb 24, 2015 12:10 PM

Understand! The not knowing and the many crazy odd symptoms one gets is so unnerving. Although we don't want to be diagnosed with anything, having an actual diagnosis that explains one's symptoms is better in my opinion.

Feb 24, 2015 2:52 PM

Yes and when there's a diagnosis we can look at those who judged us as hypochondriac or just complainers and (so in their face) go, "see it wasn't in my head!"

Feb 25, 2015 12:25 AM

FlappsyLady, I understand. There's many times I've though that something should just take me. It's true, though, the way my luck goes... A heart attack or stroke may not kill me and then I'd be stuck... LOL!!!! Sending you a hug {{{{{{FlappsyLady}}}}}}. 😊💕

Feb 25, 2015 8:09 AM

FlappysLady, you know I just thought about that. I wanted so bad to tell my ortho as well as my PCP "I told you soo! I told you there was a problem, but did you listen to me?" Nope, you didn't.

Feb 25, 2015 9:29 AM

You ladies are great! ☺ Well I get to see my PCP tomorrow, and my GI doctor. My weight has gone up 12-14 pounds since last year at this time. To prove I'm not a couch potato I bought a fitbit counter to track my steps daily. I eat less than 1500 calories a day. But my PCP says its me & not my (already proven damaged by 3 radiology tests) thyroid that's to blame for my weight. If he blows me off again tomorrow then i think its going to be bye-bye...and get a new PCP.

Feb 25, 2015 11:49 AM

Tell him to sit on it and spin!!! I don't have a thyroid any more, am menopausal and have all this other crap!! I've had the doc say it's me, also. Well, last time he made a remark about my weight I told him I was built for comfort, not speed... LOL!!! 😜💕

Feb 26, 2015 1:02 PM


Feb 26, 2015 10:03 PM

So I spent 2 1/2 hours at the PCP (mostly waiting because they forget me).

He disagrees...(all below)
1) with 3 other docs that I (or anyone) needs a pneumonia shot, or a shingles shot,

2) that anything is wrong with my thyroid because "the TSH blood test doesn't lie, and its the one that's important. Those radiology tests are just showing a scarred thyroid from a previous acute issue."

3) that my weight gain is anything other than normal; its an age-related step of life,

4) that I could possibly have MS, because if i did the the brain MRI would have shown it. He doesn't think I need any further tests,

5) that "oh yes, you do have Sjogrens after all. And that's good because now we know what's been causing your digestive issues, bladder issues, inflammation, and all."

The one good thing accomplished was he signed the papers for my DMV Handicap parking tag. I was shocked he checked "permanently disabled."

Feb 26, 2015 10:11 PM

FlappsyLady, I have to say two things
1) change your PCP
2) take that paperwork for dmv to the lawyer to add to your case to win your disability since he marked the paperwork permanently disabled.
As always, you're in my prayers. I hope it all works out.

Feb 26, 2015 11:22 PM

What an aweful apointment. Ugh. My neurosurgeons physician assistant told me that ms doesn't always show in MRI. I wish she were the neurologist because I know she would keep looking. I still think I have MS. I think my relapse ended on Friday after 5 grueling months and I think I'm stuck waiting for another relapse before I can get another doctor to run other tests.
Glad you at least get your tag!

Feb 27, 2015 10:39 AM

I didn't think about keeping a copy for the lawyer AlwayZ. Thanks!

Aliya, I'm praying you'll get a good doctor who will go the extra mile too. The upside is you're getting a little relief now. That's always a good thing.

Feb 27, 2015 12:36 PM

Definitely a good thing. My chiropractor yesterday commented how much better I look overall. And my pain was down to like a 2-3 most of the day. He's another dr. I wish could be my PCP because he sees me in all different conditions and he is very in tune with patients bodies.

Mar 02, 2015 10:47 AM

Just left my psych follow up. I told psych doc what the PCP doc said at my last appt (ref above). The whole time he was shaking his head "no." He said there's no one guaranteed test to prove/disprove any illness, and he's baffled by the PCPs comments. He added something must be going on with him because that didn't sound like him. Then he asked me if I'd like him to refer me to an endocrinologist... Praise God, someone's listening to me & treating me like an individual patient!!!

Mar 02, 2015 7:28 PM

It's an exhausting battle.

Mar 02, 2015 7:56 PM

That's so true Aliya, these Dr's. Can be such jerks. Not listening to us not at us. I'm having trouble with my pimary I asked him to do something for my shoulders pain that it has gradually gotten worse last month we I saw him he said oh its probably referee pain from your neck. My nuro tole me it felt like they were bone on bone. I don't know what to do I'm almost at my wits end something is has got to give I've about stood all that I can. I'm seriously thinking on calling the nuro surgeon who did my anteriordiskectomy myself to see him.

Mar 11, 2015 4:20 PM

I was headed to the pulmonary doctor and my PCP called, but I was driving so I let it go to voice mail. I listened to msg and he called in Rx for levothyroxine.

The pulmonary doc said my lung function was very good. He asked how I'd been doing since he changed me to Qvar. Told him I can now go through big stores, and although I get very tired I don't get short of breath. Told him I'm having thrush real bad, so he wrote Rx for spacer for inhaler.

When I got home I called and left msg for PCP about the new med and blood work. He called back and said my TSH is still elevated (not bad though, but consistently) so he was giving me the Rx to treat hypothyroidism. "But it's a low dose and you probably won't notice any changes. And I really don't think you have it, but I'm starting you on the rx." He's such a idiot! Why would you start a patient on drugs 1) if you don't believe anything is wrong, 2) on a drug they can't come off of? Idiiiiiiot!

Mar 11, 2015 4:23 PM

Oh, the pulmonary doc asked about new meds and I told him the PCP called in Rx for thyroid. He said that's important because my shortness of breath could be affected by my thyroid.

Mar 11, 2015 8:16 PM

You can come off levothyroxine. Everything says most patients will always be on it because most people's thyroids don't heal-- they always need hormone replacement. That being said, 10 years ago my TSH tested at 85 (not a typo) and I was put on levothyroxine. I took it a year or two before I stopped needing it. I haven't taken any thyroid meds since my first pregnancy. Have always tested normal.
You do to mess around with thyroids. And it's absolutely logical for him to prescribe that right away. It can be a root CAUSE a lot of the issues you may be having.

Mar 11, 2015 9:20 PM

Thanks Aliya, that makes me feel better about the med. But this doctor, he's another story. My husband and I are both his patients. We've both had multiple issues under him for 3 years. He blows off all suggestions and questions. Then he makes snarky comments like, "we'll run this test for kicks & giggles." I didn't hear that, my husband did. Thanks though for your med input.

Mar 11, 2015 11:13 PM

I agree that it sounds like you need a new pcp! It makes me so angry when Dr's are rude, don't listen and won't take us seriously when we are trying to explain our daily struggles. All we want is someone to try to help us live a more comfortable and productive life!

Mar 12, 2015 6:13 AM

Yes, you do need a new PCP. Wish it were so easy.

Mar 12, 2015 6:57 AM

I agree with everyone Flappsy you need a new PCP. My husband and I used the same Dr for yrs., when he didn't have insurance after he had to retire he sent him a letter stating he would no longer be his Dr. So I had to take him to our local health clinic and they said he made to much money month @ 929.00 a monthly, so I car r is him to an adjoin town to a federally run health clinic and he qualified only had to pay $40.00 a visit. It's rediculious. But in the long run I found him a better Dr., he is young and sets and listen to what our concerns and talks to us, he acts like he really is concerned with his patients.I've been thinking about switching the only thing stopping me is he doesn't take my insurance.

Mar 12, 2015 3:12 PM

Flappys, I so understand the Docyor thing and it is such a personal thing to get through. I wrote on here a while back about my pcp appointment and I have yet to make that jump. I will not go back to him but it seems like a huge task to establish with someone new. I am so with you on this!

Mar 12, 2015 3:49 PM

Flappy,a loong time ago,i had rash on cheeks inside the mouth.I didn't know what it is.It past after a few days.

Mar 12, 2015 3:54 PM

I can say,for sure!If you doctor is nice,kind and other stuff.IT ISN'T MEANING HE IS GOOD DOCTOR.
My doctor isn't very polite,kind or something like that,though he isn't rough,evil or something)but i like him!He is good at his job!

Mar 12, 2015 10:26 PM

MichaelR, our PCP won't even do a PSA test for my husband because he doesn't believe in them. We've both noticed changes in him over the past 3 years and we were some of his first patients, over 25 years ago. I think its time he hangs up his stethoscope or else we move on. Some of the other doctors and nurses I see have said we need to change. I just hate the process! But on the upside maybe I can see someone closer to my house instead of an hour away (traffic wise, 30 as the crow flies).

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