I can'at remember if I mentioned I got a lupus dx. I tested positive again for double stranded DNA test again last week. I'm a real mess.
They said I had a UTI: WBC 6-8. Ketones positive, protein positive, bacteria positive. They told me I had a low grade UTI about 3 mos ago and it would go away on it's own. It didn't...it only got worse. No wonder I feel badly.
I'm stumbling ...can't stay balanced. Tried to do the drunk test tandem walk....failed.(Romberg test) I feel a little foggy and like I might fall. Saw my neuro on Thursday and he says the Sjogren's is causing all this.
Woke up Sat and 4th and 5th fingers were numb again and that is still present but getting better.
So neuro calls today and wants to repeat EMG on arms and legs. I'm having peripheral neuropathy pain....just 3 second bursts of fire on my arms and legs....this is new.
I mainly eat mash potatoes cause I get nauseated with most food. Swell up to 5 mos pregnancy state. So, neuro wants me to see GI guy. He mentioned gastroparesis and had I ever had it. Yes, right after chemotherapy. So, I don't get that since I'm gaining weight like crazy.
My ankles look like tree trunks with all the swelling. I can't even see my ankle bones on the left , especially. Kidney, lymphydema,?
I can't help but wonder with protein in my urine if I have a kidney involvement with the lupus.
I know I'm a total mess.
I've lost my way and I'm thinking of going to a Lupus specialization clinic like John Hopkins. I'd like a little more consistency outta my rheummy about my dx. They aren't sure, they are sure, they don't know, they do know. I'd like a definative dx and treatment plan.
BTW, I'm forgetting things, too. If anyone has any info on kidney problems , lupus, sjogren's, I'd be appreciative of any info you care to share. Thanks
Tinker,
Sounds like you need another opinion...sometimes, even the best doctors and hospitals aren't that great either? I went to johns Hopkins and was not impressed. Thank god I have a rheumy here who also has SS, and knows about everything...
You sound like me..the Sjogrens and Lupus really hard to control. I have gastroparesis, its a nightmare. All the sudden in the last
few months, im gaining weight too, without changing my diet..it was nice before, I could eat what I wanted and not worry. Now, im very
cautious. My hormones are messed up from hysterectomy, so im guessing that has something to do with it. I also have some severe
yeast issues, and I always gained weight with yeast..they say my thyroid is fine, but I don't think so.
Since the spring and allergies are here..my migraines started big time...Im so dizzy and my neuropathy is super bad. All winter I was good..now I feel so darn ill. ughhhhh.
anyways, hope you can find some answers..come see my doc in Michigan..she is great at diagnosing.
Gursie
I hope you can find some answers.
Tinker.. sorry you are going through this.
Falling over and tilted, bouncing off the hallway walls to the bathroom. like I was drunk, Numbness, extreme muscle weakness, etc. is when the start Dr. where considering MS.
First Dx was Lupus/ Sjs... with the neasea all I eat was cold things especially yogurt. Just to cool my mouth, when I wasn't crashed. Looking back I think the carb load was not low glycimic carb load was not a good thing.. but, that was all I could manage at the time. Sum calories was less.
Thought I was turning into the 'Pillsbury Dough Girl" .. not really fat... more a puff ball. In my face.. and did not look like me.
Later.. different Rheum dropped Lupus, thyroid anti-bodies present.
So a road of monitoring.
A Dr. talking about another serious medical condition referred to the 'unkowns' as the 'black box'
Same with autoimmune. Symptoms can be managed to varying degrees... and sometimes they resolve or go into a remission on their own.. and we feel some semblance of normalcy... so we can catch our breath.
For some reason I have lost the weight, inches and now look like me again.
I did not change anything?
Something shifted.
Wish I knew what and could help.
Have bloodwork to do in the next few days.. maybe some change will show?
Dearest Tinker,
You have the 'perfect storm' of conditions all hitting at once. It is a nightmare.
Everything is probably Immune Mediated (related to dysfunction/malfunction of your immune system) except the UTIs.
The UTIs are opportunistic infections probably because you are so worn down and possibly because you also have Interstitial Cystitis (an inflammation of the lining of the bladder) which allows UTIs to make a home and set up housekeeping. D-Mannose STOPPED my chronic UTIs two years ago. It is cheap , it is OTC, and the NIH finds it is as effective as the standard antibiotics at keeping UTIs from developing.
I don't see a list of your meds, so I don't know if you're on something for nerve pain, which could help with that.
As I've said often, I take Cymbalta which helps a great deal with all of my pain.
But when the perfect storm hits, mostly there's not a lot to do but wait it out.
The thing is Tinker, the list of treatments for Lupus is the same as for Sjogren's, RA, and a host of other Autoimmune/Immune Mediated conditions.
If there is kidney involvement, then a kidney specialist may need to monitor you, the same with other organs (gastro, pulmonary, urological) and systems. But the treatment modalities are often the same for all autoimmune conditions:
Plaquenil
Chemo
Prednisone for flares
Biologicals like:
Actemra
Cimzia
Enbrel
Humira
Kineret
Orencia
Remicade
Rituxan
Simponi
Wikipedia also discusses these medications:
http://en.wikipedia.org/wiki/Biologic_medical_product
Through all of this rest, meditation and relaxation, and regular breathing can help still the mind, which is frantically trying to 'solve the problems'.
This is understandable, Tinker. The world is piling on right now. I wish you relief and rest.
Hugs, Elaine
Tinker,
I have nothing to say but that we read these posts which remind ME (and likely most of us) our health conditions are nothing compared to the litany of problems you are experiencing. I have never had a day I wanted to stay in bed. The fact you are up and typing your message means you are a stronger person than I. Our thoughts, prayers, and well wishes are there---enveloping you and creating an aura of comfort for you and your body.
ccc
Tinker, your idea of going to John Hopkins, or any major hospital, isn't a bad one. Stay strong while you wait to get your answers. So sorry you are going through this. My prayers are with you.
Hugs,
Maria
I am so sorry to hear of all the things that you are going through. I think, if it were me, I would make an appt and have a good talk with the doc and tell them your concerns. It bothers me that they let you go 3 months with a "possible low grade UTI" as any doctor should be aware that with one autoimmune disease there is always the chance of getting another one. Lupus is always high on the list as a tag a long AID or a primary one.
It would be good to have a Lupus workup and also I would think they would have you see nephrology or kidney specialist. You need attention ASAP and the fact that your double stranded test is positive plus the symptoms you describe make me think this could also be seen in ER and be classified as an emergency with faster treatment.
It sounds like you need immune suppressants ASAP also. The swelling is of great concern as are all the symptoms you mention. Please let us know how you come out. I will be praying for you. Irish
Hey, gang!
I had to go back and re-read what I had written as I just don't remember much these days.
Thanks to all of you for your input and kind words. It really means a lot to know that others are out there who identify to some entent of what each of us is going through. Thanks again...I can't say it enough.
So, Here's the update: I was able to see my neuro the next day after I saw the PA at rheummies. I absolutely forgot about my appt and had been waiting to see him for a long time.....I saw the dentist that am and it through me all outta sync. I cried that I missed thatrheummie appt. It's just another thing to make me feel nuts. Anyhow, the PA saw me the next day and scared me to death. He was talking about admitting me, or doing at stat brain mri. He called the rheummie and he said to see my neuro asap since all those sx's were neurological.
Neuro said I was having migraines. I've never had them before and have since become aware that if you are having late onset migranes, you need a brain MRI to rule out other issues. He repeated the EMG's a few days later and said my nerves are super good. Okay. He still wants me to see a GI guy which is coming at the end of the month. The neuro said the migraines are causing the balance issues. In hindsight, I should have disagreed since I've had the balance issues long before the headaches started.
UTI: I had to make an appt with my PCP and she repeated the test. This time no ketones, no protein, but the infection now is 5-10 WBC, moderate bacteria, WBC esterase 100ul, many epi cells seen,and mucous.
They were shocked that no antibiotics were given 3 mos ago, but I was told I'd be on Cipro, but the script at the Rx was Macrobid from the rheummie. Nobody knows what the heck the other one is doing.
Irish, you are right.....I'm having a sit down talk with my rheummie and I want a treatment plan. I want to know how often blood work is to be done, and if I need to see a nephrologist.
Got a headache med from the PCP: fioricet. We'll see how that works. Opps, forgot to mention in previous post that I had a 4 day headache at pain level 7. I had given up that it would go away, called the neuro nurse, and she said to go to the ER. And , then the headache disappeared. But returned the next day but at a level 2 or 3. I can handle that. It's been back everyday since.
So, in response to one of your comments about being so sick: I don't think of myself as very sick as I know so many of you are much sicker than me. I'm one of the lucky ones! Maybe I'm in denial, but I had a fairly normal day today....ran errands, went shopping and bought new clothes to wear to Miami. I deserve this trip. I'm tired of lying in bed. It's time to have a little fun and look good while doing it. It gave me a boost!!
So, I am listening to what you guys think. I'm going to ask for a brain MRI, make an appt with a urologist or nephrologist. And I want a repeat colony count to make sure this UTI has responded and is gone. I had no pain or symptoms! I am also going to buy some dip sticks so I can check for protein and WBC's on my own. I've had protein before and that's not good. Pcp explained that I could be in ketosis just because I had fasted overnight and hadn't eaten the next day. That makes sense. I must still have gastroparesis cause I get full fast, don't get hungry( but stay fat.)
I'm going to take yall's advice and call the rheummie on Mon. Sorry this is so disjointed but you know....brain fog. My identical twin had a TIA a month ago.. Guess it could happen to me, too. Yikes.
One of you said you liked cold things....ME TOO. I'm so thirsty and the cold seems to temporarily feel nice. I have a small bottle of biotene in every room and in bed with me.
Thanks to my Sjogren Sisters.
I always fail the rhomberg test lol but according to my last mri I dont have MS. I do have nerve damage so probably why I too stumble when I walk. Defiantly get an mri in my opinion esp when you are having so many coordination and balance issues. My doctor is fond of saying...boy do I wish I could see you when this stuff is actively happening lol. Normally by the time I get to get an appointment with her the stuff has gone away or is so mild it could seem like nothing. Although now my fingers are staying permanently swollen to some degree not just in the mornings so theres that.
Tinker, I don't remember all of your problems, but want to add that balance issues can come with sjogrens and with thyroid disease. I learned this the hard way and if I had it to do over again me and a couple of docs would have a "come to Jesus moment".
Remember also that with the Sjogrens there is the proprioceptive disorder that causes your body to lose the ability to discern where it is in relation to the universe---sky, ground, etc. This, in itself, can cause one to be at high risk for falls so watch the ground a lot when you walk and watch those darn curbs. The docs want to do the big testing and scans to check for the really bad stuff and rule it out.
Much of the time our issues are related to the "less severe" symptoms that are present but still change our lifestyle significantly. We sjoggies have a lot of changes in our lives such as. turn your head to the side when you swallow so you don't choke, watch where you walk so you don't fall, never take steps for granted, don't drive at night anymore, have to use a cart to lean on when shopping because of the fatigue, do't forget the water bottle and the eye drops and sunscreen, long sleeved shirt, etc and the list goes on. We become really high maintenance people. Good luck. Irish
Quote from: Tinker on May 09, 2014, 09:29:45 PM
So, in response to one of your comments about being so sick: I don't think of myself as very sick as I know so many of you are much sicker than me. I'm one of the lucky ones! Maybe I'm in denial, but I had a fairly normal day today....ran errands, went shopping and bought new clothes to wear to Miami. I deserve this trip. I'm tired of lying in bed. It's time to have a little fun and look good while doing it. It gave me a boost!!
Tinker,
(Does your nick come from the horse breed? My horse is an Irish Cob, and they're also referred to as Tinkers :) )
I know that feeling. Don't feel "as sick" as the rest here. And when I get one of the better days I'm totally convinced that I'm a hypochondriac! So, if I have problem believing myself that I actually am sick, how can I convince my doctors of it? That's a dilemma. And I'm sure it contributes to all the difficulty we have with the treatment, too. Or the lack of it, rather...
Ha, yes, I'm high maintenance. I have learned what my body can tolerate and when I just can't deal with things.
Eija, I don't believe my name is connected to the horse breed as far as I know. But, I was glad to know about this "attachment" to my name.
As odd as this sounds, I've found that if I deny the drs. concerns and downplay the red flags, they go out of their way to convince me I need treatment. Go figure. They sometimes seem to overcompensate for this. At least i get treatment.
Irish, I've never heard of turning my head to the side to prevent choking??? Maybe you should post a little "tips for survival for Sjoggies" as I consider you a valuable resource here in every way. I tell my friends who ask me for medical advice that the reason I know so much is because I've already experienced most of the medical issues first hand or my relatives and friends have. I've consulted on every case....ha.
So Monday, I'm hitting the rheummie up for a brain MRI. And I they will only ok my Rx refills....it's a big problem. ugh
Thanks again, everyone, for your valuable input. I'm not alone.