Still no answers, just more questions

[flutterbee]

I had my follow up rheumy appointment Wednesday. At the initial appointment he ordered tons of bloodwork (9 vials total) and xrays of my back and right hip.

X-rays look good. You could have knocked me over with a feather as I have so much pain and burning in my hip, I wouldn't have been surprised if we started talking about hip replacement. Basic lupus test came back positive (had been negative in the past), but further testing showed no lupus. Vitamin D is extremely low - almost non-existent. Level should be at 30; I'm at 4. So, after pushing he ordered more testing for celiac sprue and put me on very high doses of Vitamin D supplement. I had some elevated protein which prompted more testing for multiple myeloma. I don't have those results yet.

I've really been struggling the last few days. We've uncovered more of the puzzle, but we still don't have the answer. Everyone was putting all of their money on connective tissue disorder so I feel like we're back at square one. Vitamin D deficiency can cause bone and muscle pain, but it doesn't seem to cause the nerve involvement I have which is getting worse nor the swelling and I don't think it can cause the other neurological impairment. on the other hand, Vitamin D deficiency is linked to my coronary artery disease so we may finally have an answer as to my heart disease. Plus, we need to determine the cause of the severe deficiency.

As another thought, a former friend of mine had abnormal results that were indicative of (I think) myeloma and after being tested further at the cancer center was determined it was lupus. Since I had the negative then the positive, it's making me wonder. Lupus is also the only autoimmune disorder linked to premature arteriosclerosis. I don't know. I feel like I'm grasping at straws anymore.

I really, honestly do not care anymore what the diagnosis is. I just want my life back and I want off this roller coaster. I just don't think I can take much more of this. When I left the rheumy office on Wednesday, I envisioned throwing myself in front of a truck. It should have bothered me, having that thought, but it didn't. I used to have those thoughts all the time when my depression wasn't under control. I haven't had those thoughts in years. It's amazing how easily that can all come back. (For the record, I'm not actively suicidal. It was just an indication of my limitations right now.)

I have an appointment with my GP on Monday to talk to her about all of this. I need someone to talk this through with and to help me make sense of it and to plan our next step. Still have more testing with the neurologist, too.

 

[daralex]

My heart goes out to you! I'm so sorry the news wasn't better today, it must be so incredibly frustrating. Obviously there's not a heck of a lot I can say except my thoughts are with you and I wish for you a speedy diagnosis so you can get your life back. ((hugs))
-Dara

 

[nvts]

I wish I had some funny remark to make. I just feel bad for you. My littlest sister is just about at the same point as you. One doctor to another to another and to another. All of them shrugging their shoulders, adding another pill and on to the next guy.

The worst part is no one believes that she's got a problem. "It's all in her head". No sh!t Sherlock...she's going to a NEUROLOGIST! they don't find my remark funny, but she does so that 's all that matters.

Take some time to smell the roses, listen to this really horrible band that I heard some woman in your neighborhood allows to practice in her living room (can't remember her name!) and breathe.

We/I'm here for you!

Beth

 

[Big Bad Kitty]

Oh sweetie. I've been thinking about you a lot (have not seen you on the board much).

My mom has MS and has to take Vitamin D supplements, but they bother her stomach. Do you find that to be an issue? Has MS been explored for you? She also has fibromyalgia, she ALSO has CFS, she ALSO has Kiari malformation. I just see many similarities in your symptoms and hers, and it breaks my heart to hear the pain you are in, both physical and emotional.
Wrapping you (gently) in a hug.

 

[susiestar]

Heather,

I am so sorry. It is hard when you get a piece or 2 of the puzzle, but no real answers. I am also very low on Vit D and I just cannot keep it in me. It makes me very ill. We are now switching to Zofran from phenergan to try to help me get some.

The blood work is NOT the only diagnosis criteria for lupus. and the back and forth results are something I have heard of from others who have lupus. We have a strong lupus and chronic pain support group here, and I have known the women for 25 years or more). If you want to email someone with lupus and years of experience with the wierdness it can produce, I will put you in touch with my mom.

Xrays OFTEN do not show problems unless the bones are visibly damaged. That leaves a lot of room for damage that is not visible. A bone scan (Not bone density, but bone scan) will show areas where there is arthritis and inflammatory activitiy. I did not find the bone scan uncomfortable or scary.

Have they discussed neurontin or lyrica for nerve issues? Neurontin is the older medication, lyrica is the newer one and is very effective. I have had great experiences with it. It is worth asking the doctor about.

I understand the bus thing. I sometimes wonder if it wouldn't be a good idea, but also am not actively suicidal.

I hope that you can get answers and help soon.

Sending hugs,

Susie

 

[Hound dog]

(((((hugs))))))

Chronic pain can make you think things you wouldn't believe you'd ever consider. It's awful, but true.

I was hoping docs would have more to go on after the blood results. Maybe if they can figure out what caused the vit D deficiency it will tell them the rest?

Have they checked you for metabolic disorders?

Travis' neuro decided that since no one else had come up with a diagnosis for the symtoms he was having, and since he himself had no clue, to test him for everything. Seriously. Everything A - Z. (including exotic diseases) Anything that had a blood test for it. It's how they found the polycythemia. Which, by the way, explained all of the symptoms he's had for years. Even when the first and second tests indicated he had it, docs told me they didn't think he did because it's extremely rare in someone so young. Bone marrow test confirmed. They couldn't believe it.

You know what's ironic about that? It should've been picked up in just a routine blood count. Yep. But was missed over and over. Why? Because that wasn't what the doctor had ordered the test for at that time. ugh

I certainly hope they can puzzle out what's going on. The not knowing can drive a person batty, and makes it difficult to find treatments that are effective for long periods.

Hugs

 

[flutterbee]

Dara - thanks for the hugs.

Beth - thanks for the understanding words. By the way, that particular band IS practicing in my house tonight, but I told them they were not taking over the living room. However, I seem to hear them spilling into there now. Going to have to kick them out.

BBK - I've only taken the vitamin D supplement once so far (last night) and it didn't seem to upset my stomach. It did seem to cause an intense headache, but that could just be coincidental. I only take it twice a week (50,000 IU twice a week) so I'll keep my eyes open. Thanks for the hugs.

susie - I wondered about lupus back before I had the heart attack. In June I had the first, basic lupus test that was negative. This test was positive and then they tested further. I have researched and do know that they can't diagnose based solely on blood tests and I have enough of the other symptoms (just researched that again tonight via the lupus foundation website) to warrant a conversation about it. I printed out everything relevant to what I'm experiencing from that site and it ended up being about 20 pages. And to date, no one has addressed the nerve issues. I'm going to have an EMG which I *thought* was a nerve conduction study, but actually checks for neuro-muscular disorders. I woke up at least half a dozen times last night with my left hand completely numb. You could drive a stake through it numb. The rest of the day it's just various degrees of tingling and numbness, but I do have spreading numbness with use. Plus, the restless leg thing isn't so much restless leg as it feels like all the nerves in my calves are standing on end and I can't stand for anything to touch me. Then I get that feeling in my spine and then my arms. That had me up the night before. And the pain/burning in my hip? I can't walk for more than a few minutes before being in excruciating pain. That's gone on for a while now. A couple of years ago, I picked difficult child up from a friend's house and they were at the store and their dog got out. Chased that damn dog all over the neighborhood (beagle), finally caught her and had to carry her home because she wasn't wearing a collar. I got halfway there and had to stop and was down on my knees on the sidewalk in the cold (it was late fall/early winter) rain. My car was running in the driveway and I asked difficult child - who was 10 years old at the time - if she thought she could bring the car to me. She looked at me like I had grown another head. I barely made it back to the car. We were only a block away. And if I do anything with my right hand - write, wipe the counters, hold a book - it swells and I can hardly put my fingers together. I ran the vacuum the other night and besides being barely able to walk after, I couldn't turn a doorknob with my right hand.

And this doesn't even talk about the normal aches and shooting pains. Or the fatigue. Or the mental slowness. sigh.

Lisa - I had hoped for more answers, too. Everyone put all their money on the rheumy and when he didn't have any real answers I just fell apart. I feel like we've been spinning our wheels and really aren't any closer to an answer than we were before. In the meantime, my life is in a holding pattern. I live and breathe this everyday and I just can't anymore, yet I keep going back to more research because I feel like I have to do *something*. I don't know how else to deal with it.

 

[totoro]

The biggest softest hugs to you!!! I wish I could heal you... and make you all better!!!

 

[hearts and roses]

Definitely, an autoimmune disorder can wreak all sorts of havoc for a long time before an official diagnosis. I hope that comes soon.

Two of my sister's have celiac and my neice does also - I've seen first hand how awful it can be, the waiting. The had to have the GI testing before they got an actual diagnosis, because the blood work was not conclusive enough to rule it out or be positive. Now that they have been on their gluten free diets, they are all doing great. My niece was 2 when she was diagnosed and the poor little thing went through so much. She's 19 now and wonderful.

Sending hugs and support - I'm so sorry that you're so weak and in pain. I hope that some of this major blood work offers some conclusive results so you can begin to heal.

 

[Wiped Out]

I'm sorry you don't have more answers. I'm more sorry for your pain. Gentle hugs.

 

[meowbunny]

I was really hoping you'd get some definitive answers. Honestly, my vote is for lupus. Has been for awhile.

I have no words. They've all be said by others. So, just many, many hugs and my shoulder when you need it.

((((((((((((((((((HEATHER)))))))))))))))))

 

[DammitJanet]

Heather...all I can say is been there done that. My xrays never showed the arthritis until lately and now its really bad. My osteo doctor was amazed that I had as much damage in my knees until he actually opened me up and then he was apologizing all over the place for not believing it was that bad. Now when I say something hurts, he believes me.

I also cannot walk or stand up very long. I have had the swelling of the hands and the numbness though mine is in my legs.

It can take way too long to figure these things out because they seem to want to rule out everything else first. It gets so depressing that jumping in front of something seems like a positive step. I wanted to drive my car under a tractor trailer. I think that is when they started to believe me that something was really bothering me.

Keep going and believe that eventually something will be figured out. It has to be.

 

[ML]

Heather add my prayers and love to everyone elses. I am thinking bright white healing light as I visualize you. You are a special lady and I hate that you hurt. (((H))) ML

 

[flutterbee]

Thank you all for the hugs and support. I stayed off the computer today because I just needed a break from researching things. You know how it goes...one thing leads to another which leads to another. I should have an honorary medical degree by now.

Susie and BBK - talk to your doctor (BBK, have your mom talk to her doctor) about taking cod liver oil to get the vitamin D - maybe that won't cause the stomach upset. It's high in vitamin D, however I did see a blip about possible Vitamin A toxicity with it which is why I say talk to your doctor before trying it. Vitamin D that is prescribed is D2 and what is in cod liver oil is D3 and is natural. It's supposed to be very effective. I didn't really read that 'blip', but saw the mention of it.

 

[susiestar]

Heather, thanks for the tip on cod liver. My body HATES anything fishy, so that one didn't work well. I do appreciate you thinking of me.

Are you getting the exact lab reports, or just what your doctor tells you from them? Over the years you will have a LOT of bloodwork done. It is important to make sure they give you copies of the lab report - not just the doctor's report.

Then take the lab reports and make graphs for each item. Some things can only be figured out because this test increases and those tests decrease, even though they are all in the normal range.

This is how they diagnosis'd my mom's liver problems. She has had YEARS of lab work and she graphed it all. The trends shown in the tests are much more revealing than the numbers on each test alone.

Just like looking at kid's testing reports, you have to look at more than just the numbers.

The burning you are describing is exactly what Lyrica is supposted to treat. In ads they show feet on a cactus and ask if this is what you are feeling. Several people I know have had good results with burning from lyrica. Each doctor I see wants to know if I am on it because it will treat what I have. If I go off it I really get the burning and numbness, etc.....

I hope that the doctor and you can figure something out. Glad you are doing your own research.

hugs,

Susie

 

[timer lady]

Totally understand your frustration levels. I have to tell you the truth, after a certain point I quit researching. I made the professionals do their jobs. I went in with ideas; more so I went in with the attitude that if this was beyond them I needed a referral to a doctor who could/would handle the situation.

In the end that worked - my sanity (what was left of it) was saved as well.

Keeping good thoughts that you find answers quickly.

 

[Star*]

WyntersG...

What about Sprue?

http://www.emedicine.com/RADIO/topic652.htm