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nesne1
05-16-2009, 12:47 AM
Hi All,

I'm just new here. I am still awaiting official diagnosis from the rheumatologist but have tested positive for ANA and they have told me that they think I have lupus but they said it could also be rheumatoid arthritis. I'm only 25 and I am having lots of crazy and scary symptoms which are freaking me out a little. I've been on 25mg of panafcortelone which they have reduced for further testing which has made me quite unwell. I have been reading these forums and found them quite useful and reassuring in that I am not alone. It's also good because I can't really join a support group since I don't know what is wrong with me but it will help to be able to discuss things here. Wishing you all well xxx

Hazel
05-16-2009, 01:29 AM
One thing for sure is that you certainly are not alone! Im 17 and found this site a couple of months ago and it has been very helpful. Everyone here is very suppor5tive and often have great advice.
For your sake i certainly hope you diagnosis goes well and that you dont have Lupus. I also tested posititve for ANA so i know how scared you must be. Its great to know there are poeople here willing to listen to your problems and help you through the tough times!

xx take care and keep us all updated about you diagnosis!

Rastagirl
05-16-2009, 01:30 AM
Hello nesnes1...

Welcome to the forum. I'm so glad you decided to join in. Now you are most definitely not alone. :veryhappy: I'm Lori and I was diagnosed at age 18. I've lived many years with Lupus. I truly understand just how frustrating and scary it is to have an illness like this at a young age...right when you're starting out your adult life. So sorry you're going through all this...the terrible symptoms you're suffering with and the waiting for a diagnosis. That's such an awful wait. There are plenty of people here who understand exactly what you're going through. Quite a few who are right where you are, awaiting a diagnosis.

I'm not familiar with the medication you mention. What is it for, Lupus or Rheumatoid Arthritis? Feel free to share your symptoms that are scary, and I know there will be some great members here to reassure you or provide information you may need.

You'll find a great group of supportive, caring people in this forum that are always willing to jump in and answer your questions, or provide reassurance and support. And to support you while you await an exact diagnosis. Hopefully that diagnosis will come quickly so you can begin the right treatment to help you feel better.

Sending you caring hugs :hug: ...

Make sure you ask if you have any questions about navigating through the site...someone will always help.

Fondly,

Lori :heart:

Hazel
05-16-2009, 01:34 AM
Rastagirl, i thought i would just let you nkow that panafcortelone is just the same as prednisone. I remember that because i recieved some information sheets about it and asked the nurse how to pronounce it! She just told me it was exactly the same as prednisone and laughed at me a little :)

mountaindreamer
05-16-2009, 06:15 AM
hazel, thanks for explaining the drug. my suspicion was that it was the same as prednisone, but i was not sure.

nesne1, first, welcome to our family...i hope we can help you as much as everyone has helped me. I too was so frightened, but now i am learning how to manage and live a new life.

you say your dr. lowered the dosage and that you do not feel well. I am not on prednisone, but from what i have read here among other members, it is very important the dosage be reduced at very small increments. Quick reduction in dosage often causes symptoms to return and to get really bad. So, since you are feeling so badly, you may want to call dr. and report this to him/her. You may need to go back up on the prednisone.

Also, read some of the threads here that address the various symptoms, and write them all down (even if the symptoms are not presently bothering you), and tak list with you to the dr. This will help the dr. determine how many of the criteria you meet.

Let me give you some advice. If you have not been diagnosed, make sure that you have all of the life insurance and medical insurance that you need. Once a person is diagnosed with lupus, we can't get any more insurance....so get your "ducks in a row" as we country gals say.

nesne1
05-16-2009, 07:22 PM
Hi All,

Thanks for your replies and advice. It's so reassuring to know that I'm not alone. Sorry for the confusion re. medication I'm not quite up with what is what and it's all a bit new and foreign to me. I am seeing the rheumatologist again on Wednesday after doing a blood test off the medication on Tuesday so hopefully that will provide me with some answers. My joints are all being attacked which I have seen mentioned here before but I am curious if anyone else experiences night sweats and also a "jumping" sensation almost like a shock randomly in various parts of their body (particularly lower extremities) at night in bed??
Thanks for your help!! xxx
Have a good day
Also if anyone is facebook and is happy to talk and discuss stuff with me can you please pm me so I can add you as a friend??

Hazel
05-17-2009, 01:02 AM
I get night sweats only during the really bad flares. Theses are absolutley horrible i remeber the first time i got it it was so uncomfortable. Its been a while since i have had them thank-goodness and i hope they go away for you as well very soon.

xx Take good care of yourself!
Im not on facebook :( Im pretty lazy with all that kind of stuff...

Pearl
05-17-2009, 01:09 AM
I know it is frightening and a little overwhelming going through the diagnosis process. You are among friends here. While we certainly hope you do not have lupus, you are welcome here anytime. There are many friendly, warm, supportive people on this forum.

Just wanted to say hello.

maguadalupe
05-17-2009, 05:48 AM
Welcome , my name is maria here you will find a lot of people that understand you

take care

maria

magistramarla
05-17-2009, 06:44 AM
Hi All,

Thanks for your replies and advice. It's so reassuring to know that I'm not alone. Sorry for the confusion re. medication I'm not quite up with what is what and it's all a bit new and foreign to me. I am seeing the rheumatologist again on Wednesday after doing a blood test off the medication on Tuesday so hopefully that will provide me with some answers. My joints are all being attacked which I have seen mentioned here before but I am curious if anyone else experiences night sweats and also a "jumping" sensation almost like a shock randomly in various parts of their body (particularly lower extremities) at night in bed??

Hi from Marla,
I've had that "jumping" sensation in my legs for a long time. I've also been dealing with the night sweats for over a year. At first, I thought that the night sweats were menopause coming on, since I'm 51, but that doesn't seem to be the case. I often disturb my hubby's sleep when my legs jerk and I'm restless for an hour or so at night. Those leg jerks get kind of funny when I'm sitting on the couch with my laptop and a cat snuggled on my lap! When my leg jerks, the laptop moves suddenly and the cat jumps even higher - funny sight!
I've been dealing with the diagnosis dilemma for two years. My new rheumy says that I'm mildly positive for Lupus, Psoriatic Arthritis, RA and Sjrogren's syndrome. She called this a Mixed Connective Tissue Disorder, and has me on Planquenil. As soon as I'm off of the antibiotics from my oral surgery, she's putting me on Methotrexate, too.
I also have osteonecrosis, Meniere's syndrome and Spasmodic Dysphonia, so I keep the docs busy.
You are definitely not alone. I hope that this helps you. Just research and learn as much as you can, and maintain a good sense of humor. We laugh when I scare the cats, and we keep doing the things that we love to do. We love to travel, so we rented wheelchairs wherever we went last summer and Jeff pushed me everywhere. I teach, and I often fall down in front of my students. When it happens, they pick me up, point me toward the whiteboard, we laugh, and we go on with the lesson. I refuse to let this thing stop me from my normal life!
Cheers,
Marla

nesne1
05-18-2009, 12:07 AM
Thankyou so much for these replies and sharing your experiences with me! I was not sure if my night sweats and leg jumping were part and parcel of this or something else altogether. I am taking all of your sound advice on bored! I have been falling over also - tripping but also my left knee literally falls out from underneath me. I have been finding it quite embarrassing. I think also because people presume that I have injured myself playing sport and that's why I'm limpng they are shocked when I answer them as to why I am limping and then they seem to get awkward?? Or maybe it's just me?? I am laughing at a lot of stuff but I think I need to learn to laugh at more. It will definitely help. I haven't freaked my cat out yet but I have got frights from car horns in the street which has made my leg collapse underneath me... it made me feel a bit silly... :unsure: Take care everyone I have sorted out my insurance stuff thanks to the advice and I think it's a bit different system to yours because I am in Australia but now that has been taken care of thanks guys!! Also this in not lupus related but just venting because I am having a run of bad luck. I have wanted a dog for a long time do my partner thought now is the time to cheer me up and get me a dog because I haven't been well and he thinks I could do with the extra company and I chose a little puppy and the people at the shelter let me meet and bond with the puppy then when I was about to adopt her they said we couldn't have her because we were not suitable owners because we worked too many hours... :-( They told me I could choose a different dog but not that one??!! How awful??
Also one mroe question can you test positive for ANA but negative for lupus but still have lupus?? Thanks for all your help!

Take care everyone X

Saysusie
05-18-2009, 08:17 AM
Hi Nesne1;
I am Saysusie, moderator/administrator of this forum. I'm glad to see that you have already been helped by some of our members here and that you've been assured that you are not alone.
You asked if you can have a positive ANA but other tests for Lupus are negative and if you can still have Lupus?
The ANA test is ordered to help screen for autoimmune disorders. While it is most often used as one of the tests to diagnose Lupus, there are several other auto-immune disorders that will have a positive ANA.
Depending on the symptoms that you are presenting, the ANA may be ordered along with one or more other autoantibody tests. Also, other laboratory tests associated with presence of inflammation will be ordered: such as erythrocyte sedimentation rate (ESR) and/or C-reactive protein (CRP) may also be ordered. Also, the ANA test may be followed by additional tests that are considered subsets of the general ANA test and that are used in conjunction with your symptoms and medical history to help rule out a diagnosis of other autoimmune disorders.
Other conditions in which a positive ANA test result may be seen include:
* Sjögren’s syndrome: Between 40% and 70% of patients with this condition have a positive ANA test result. While this finding supports the diagnosis, a negative result does not rule it out. The doctor may want to test for two subsets of ANA: Anti-SS-A (Ro) and Anti-SS-B (La). The frequency of autoantibodies to SSA in patients with Sjögren’s can be 90% or greater.
* Scleroderma: About 60% to 90% of patients with scleroderma have a positive ANA finding. In patients who may have this condition, ANA subset tests can help distinguished two forms of the disease, limited versus diffuse. The diffuse form is more severe. Limited disease is most closely associated with the anticentromere pattern of ANA staining (and the anticentromere test), while the diffuse form is associated with autoantibodies to the anti–Scl-70.
* Raynaud’s disease,
*rheumatoid arthritis,
*dermatomyositis,
*mixed connective tissue disease
A positive ANA test result may suggest an autoimmune disease, but further specific testing is required to assist in making a final diagnosis. ANA test results can be positive in people without any known autoimmune disease. Most positive ANA results don't have significance by themselves, so doctors should vigilant to treat and/or to look for development of signs and symptoms that might suggest an autoimmune disease.
About 95% of SLE patients have a positive ANA test result. If a patient also has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia, then the patient probably has SLE. In cases such as these, a positive ANA result can be useful to support SLE diagnosis. Two subset tests for specific types of autoantibodies, such as anti-dsDNA and anti-SM, may be ordered to help confirm that the condition is SLE.
A doctor must rely on test results, clinical symptoms, and the patient’s history for diagnosis. Because symptoms of auto-immune diseases (especially Lupus) may come and go, it may take months or years to show a pattern that might suggest Lupus or any of the other autoimmune diseases. In the meantime, a dilligent and caring doctor will continue to treat the patient's symptoms.

I hope that I've answered your questions. Please let us know if you need anything further.

Peace and Blessings
Namaste
Saysusie

nesne1
05-18-2009, 10:31 PM
Thanks for the detailed response all of that seems to make sense and I did some additional tests including some of those you mentioned for which I will get results tomorrow. This forum is so good ... no one has explained any of this stuff to me!! Cheers everyone for the help! It's much appreciated!

nesne1
05-20-2009, 02:57 AM
I went to the rheumatologist today but I don't really seem to be getting anywhere. I am unwell and have positive ANA but she has ruled out Lupus and Rheumatoid Arthritis because apparently my blood results do not show enough inflammation? She has just said I have a connective tissue disease and is putting me a combination of Plaquenil, Tramal and Prednisolone. I also am having an MRI to try and out MS? I think this is going to be a long slow process and I don't think a clear cut diagnosis is getting any closer let alone information on when I can expect to get better or whatever. How frustrating! I guess many of you have already been through all this... All the best to others in the same situation!

mountaindreamer
05-20-2009, 03:48 AM
hi nesne1,

yes, this is such a frustrating phase of diagnosis that you are in. Drs. do tests, tell us something is going on, but they do not know exactly what it is....it will drive you crazy.

Did your dr. check you for fibromyalgia?

Hopefully you will get some relief from the prednisone and plaquenil....however, it can take up to 6 months for plaquenil to work. What dosage of prednisone did your dr. start you on? Hope you start feeling better.....remember each drug can cause stomach issues, and these can last for a few weeks.

stay with us, we will help you sort out all of these questions.

nesne1
05-20-2009, 05:21 AM
Thanks for the reply. I am not sure if I have been tested for fibromyalgia. I will have to ask my doctor tomorrow. I'm not sure about MS because my symptoms are more pain (back, neck, shoulders, arms) and not really numbness. Also trouble walking and my legs are shaking going down stairs and one knee giving way completely and that kind of thing. Also had restless legs, night sweating, fevers, fatigue etc. I tested ANA positive but all my other blood tests seem normal?? I don't know what is wrong with me and what my body is doing?? :no:

nesne1
05-20-2009, 05:28 AM
Also some problems with my elbows and trouble sleeping at night. I cannot find a comfortable position in bed and I end up swapping sides with my partner several times a night. This only started with all the other stuff. Has anyone had this??

mountaindreamer
05-20-2009, 06:03 AM
hi nesne1,

the fibromyalgia test is very simple. Your rheumy can basically press on specific pressure points on your body. You will feel the pain when pressure is applied. I have had fibromyalgia for so many years, i forget where all of the pressure points are, and how many of them there are. You can find specific information on the web. Fibroymalgia affects specific soft tissues and is incredibly painful. However, there are some meds that some people have success taking.

I just posted some info on sleeping aids, you can find them in Lauri's Lounge. Also, several years ago, i had to purchase a really soft mattress, and i have tons of pillows that i put under different parts of my body. This seems to help the most with sleeping discomfort....i will put them under areas that are especially painful that night.

hope you are having a better day.

nesne1
05-20-2009, 01:44 PM
Thanks for the tips re. sleeping. The fibro test is something she did I'm pretty sure and I didn't seem to have it?? If I knew what I had I think it would be easier to come to peace with the fact that I have very limited control over my body and my body thinks bed time means time to start break dancing and stuff. :wacko: I'm so over it!

dsunshine
05-20-2009, 02:16 PM
Hello nesne1
Sorry you have no official diagnosis as of yet. Hang in there...one is coming. I know it is scary to have these symptons and be young as it is/was scary for us all. One minute your doing great and the next you can barely move or function. You have come to the right place to vent/question or just say whatever is on your mind.
Welcome!

monkeyfeet0702
05-20-2009, 03:57 PM
Hello NESNE1, I'm so sorry that you're stll waiting for your offical results. We all know how frustrating it is, we've all been there. But stay strong, think positive, thats what will keep you going. It took a set of doctors 4 yrs before I was diagnoised with Lupus (SLE). Those 4 yrs not knowing was the worse part of this whole thing. But once I found out what was wrong and started my med's, everything turned around. Now that I knew what was wrong with me, I could start making the necessary changes in my life. So stay strong, keep the faith.

nesne1
05-20-2009, 05:53 PM
Thanks for your reply guys. Just wondering why the diagnosis took so long in each case. Is it because the test results didn't show things up or other reasons???
I have a new symptom to throw out there
50 kilo legs that don't feel like they match what they are doing... ?? Like they don't feel like your legs?? Anyone??

mountaindreamer
05-20-2009, 06:21 PM
hi nesne1,

i suspect there are several reasons that would cause a diagnosis to take a long time. First, understand that lab work can be false/positive, can go from positive one time to negative the next time, and can differ between labs. Also, symptoms are intermittent, so hard to pinpoint a specific disease with the patients' list of symptoms.

Finally, some drs. are idiots, and can't make a diagnosis.

whatever the reason, i understand why drs. are so cautious about diagnosing lupus...you see, everything changes. after a diagnosis, you can no longer get life insurance or new medical insurance. Plus, they use really strong meds to fight lupus....why put someone through this if they don't have the disease.

Saysusie
05-20-2009, 06:51 PM
Another reason that diagnosis takes so long is that Lupus is an auto-immune disease. There are about 80 different auto-immune diseases and they all have symptoms that overlap and/or mimic one another. Also, symptoms develop slowly and they can change. As Mountaindreamer stated, lab results can be positive at one drawing and negative at another.
In order to get a definitive diagnoses, doctors generally go through a process of elimination; meaning they run tests to eliminate (one by one) disorders that could be causing your symptoms. They do this until they finally get to the root of the problem. However, there are some members here who still have not received a positive diagnosis and are told that they have mixed connective tissue disease or undifferentiated connective tissue disease. These are terms for illnesses that have not defined themselves yet, but are in the auto-immune family!
I know that it is all very frustrating and we truly understand your frustration. I hope that you get some answers soon, in the meantime, we are here to help you!

Peace and Blessings
Namaste
Saysusie

nesne1
05-21-2009, 07:04 PM
These responses make a lot of sense. It's amazing that I have paid a lot of money to Osteos, Gps, physio, specialist but I've got most of the useful information on this forum.
I am having a lot of problems with twitching. And I cannot take my medication (prednisolone) as I'm told it could eliminate any "evidence" from my MRI... :-( But I couldn't get an appt for my MRI for two and a half weeks and I need to go back to work?? :unsure:
I hope this gets better...

scubagramplit
05-21-2009, 10:58 PM
welcome, just read youre thread, sorry about the diagnosis delay. most all of these started with this flair; yes, night sweats & that jumping sensation in hands & arms, sweating at night to the point the bed is wet(which is pretty much gone now since starting on 40mg a day of prednisone), shakyness, achy joints, trouble sleeping, start perking up in the evening when I should be going to sleep. good luck and keep your chin up. sincerely, Jim.

nesne1
05-24-2009, 09:54 PM
I am too sick to be at work at the moment. Not able to have a shower without a chair and can't get to the shops. :unsure: And I cannot up predisonone before my MRI .... June 11th. I also have vertigo causing me nausea and vomiting and lots of pain. I saw the docotr today and he gave me some stemitil to stop the nausea which is good and said I could take some more tramadol. I felt so dumb because I failed his test to follow his pen with my eyes without moving my head plus it almost made me throw up. I am 25 years old and fit... how does this happen?? I hope all of you start to feel better soon too coz this sucks and bad enough this happens to one person let alone a whole bunch of us!! :hissyfit:

scubagramplit
05-25-2009, 05:50 AM
with this last flair i hav't been to work for three weeks, been just over two weeks since my rheumy appt. put me on 40mg prednisone a day, it has taken the two weeks for me to really start to feel any diference but still up and down mood swings, i really have to try to pay attention so i don't get to irritable, especially toward my wife and little girl, i appologize alot and still try to show them lots of love. this terrible disease is hard on everybody. anyway I sincerely hope all settles down. let us know how the mri goes(is this on the head for the mri?) am waiting for scheduling myself for one of those. !! I am learning also but i stress do not ever feel dump about what this diseas does to or causes you to do, we have no controle over that!!! we can however keep our chins up and be possitive and don't let it take controle over our lives. I truly hope you find some relief soon. we are all in this together, keep us posted. God bless, Jim.

mountaindreamer
05-25-2009, 06:16 AM
hi nesne1,

so sorry that you are still feeling so bad. The MRI will only show problems if the inflammation is present....so many times, we schedule these tests, and by the time we get in, the inflammation has reduced and the MRI shows nothing. This may be why the dr. can't up your prednisone. So sorry you have to wait this out, but i do hope that you can get some rest and that you feel better very soon.

Jim, i know how you feel about the way you treat your wife and daughter....irritability is one of my first signs that a flare is coming on, plus, after hurting for so long, it is difficult not to just get a pissed off attitude....it is good that you realize what is happening, and that you let your family know that you are sorry. you are obviously a very caring man, and your wife and daughter are lucky ladies to have you in their lives.

nesne1
05-25-2009, 06:54 PM
Thanks for your responses Jim and Phyllis. My MRI is of my brain, spinal cord and left knee because that keeps collapsing... I have spoken again to the specialist and am able to increase the prednisolone and then taper it off before the MRI so with any luck I will be healthy again in a day or two for a short period only. Still, better than nothing. Have schedulled a bbq to see everyone for when I know I will be able to be well so that's quite exciting. Will keep you posted on MRI results though I won't get them until June 17th... that seems like a really long way away...
Jim I hope you start feeling better soon. In some ways I think I'm lucky I'm quite small and it only takes me 25mg to be feeling a lot better.
Be well everyone...

nesne1
05-31-2009, 08:56 PM
Just wondering if everyone has moments of wtf is my body doing? I have had pain in my neck for a few days but last night my neck completely locked up and I got this paralysed pain from the bottom of the back of my head down to my upper back. It was so bad I felt like throwing up and I could barely move or breathe. Today I can move my neck but it feels as though it is injured and is still very painful... How does this randomly happen?? :no:

rob
06-01-2009, 06:50 AM
I get that sort of pain in my neck alot. It just shows up. It's painful enough to make me wince, it's pretty intense. Last night, I got a new pain down in my shin. It's like a burning sharp feeling down in the bone, and it radiates up to my shoulder. I know it's a CNS problem. This sort of thing is just so random, it makes no sense. The thing that really makes Lupus a disability for me is not always the pain, it's the damn unpredictability of it all. Makes it hard to plan even the simplest of things.

Saysusie
06-01-2009, 12:09 PM
As Rob mentioned, it does sound as if it is a CNS problem. Some of the more common signs and symptoms of CNS (Central Nervous System) problems in Lupus are: headaches, confusion, difficulty with concentration, fatigue, and
occasional seizures or strokes. However, there is a possibility that you may be dealing with CNS Vasculitis. CNS vasculitis is inflammation of the blood vessels of the brain. It is the most serious form of systemic lupus. CNS vasculitis is characterized by: high fevers, seizures, psychosis, meningitis-like stiffness of the neck. CNS vasculitis occurs in up to 10 percent of all lupus patients.

I would suggest that you contact your doctor ASAP in order to determine if CNA Vasculitis is the cause of your neck problems. If it is, it should be aggressively treated.

I hope that you get this sorted out and that it is nothing too serious. Please let us know what you find out and what you and your doctor decide.

Peace and Blessings
Namaste
Saysusie

nesne1
06-01-2009, 06:46 PM
Does anyone know how this is tested for? I have tested negative to Lupus but still no real explanation of what's happening. Would this show up in an mri as I scheduled for one next week... My dr goes on leave today until after my results come back and my physio too...
The Dr just said I can up my tramdol and suggested a neck brace but it didnt help because the join of the brace is where I need support...:nah:

mountaindreamer
06-01-2009, 08:02 PM
hi nesne1,

it is my understanding that a MRI will only show something if there is activity going on at that particular time. If nothing is happening at the momen of the MRI then nothing will show up.

Have you been tested for fibromyalgia. there are several pressure points that run from the back of the head at the top of the neck, all the way down the back of the neck and into the back. I really suffer with tremendous pain in the back of my head.

nesne1
06-01-2009, 08:37 PM
Ok Thankyou. I don't think I have Fibromyalgia. My neck is not that sore to touch. The pain seems like it's deeper inside if that makes sense. I can withstand full strength massage and all that stuff it's just my neck cannot hold the weight of my head and it feels as though it is injured. Hopefully my MRI next week will shed some light on this then... :unsure:

rob
06-02-2009, 07:26 AM
Ok Thankyou. I don't think I have Fibromyalgia. My neck is not that sore to touch. The pain seems like it's deeper inside if that makes sense. I can withstand full strength massage and all that stuff it's just my neck cannot hold the weight of my head and it feels as though it is injured. Hopefully my MRI next week will shed some light on this then... :unsure:
That's what my pain is like, it's deep down inside, not near the surface.

mountaindreamer
06-02-2009, 08:24 AM
hi nesne1

please be sure and keep us posted. So sorry you are going through this, but hopefully things will turn out ok. You have done an excellent job of identifying exactly what the pain is, and i know this will help your drs. find out what is happening.

nesne1
06-02-2009, 05:49 PM
When you get tested for Fibromyalgia isn't it usually painful to touch? Mine is not. I hope they find out soon. I'm so bored of being @ home. Anyone come up with good ways to keep themselves entertained at home whilst not able to go to work?

mountaindreamer
06-02-2009, 05:54 PM
hi nesne1,

there are many pressure points, and not all fibro patients are sensitive to all points. However, yes, it hurts when pressure is applied to the points that are affected. I have never been able to press them myself and feel the pain, but when my dr. does it, i just about come off the table. Then she can press some points on me that are not affected, and i don't feel any pain. So, you don't have to hurt at each pressure point, and should be thoroughly tested, not just sporadic checks.

nesne1
06-02-2009, 09:44 PM
Thanks I will follow this up.

purple_butterfly
06-03-2009, 02:10 AM
Marla;
Your post made me laugh. I thought I was alone in the leg jerking strange sensation and falling. Do you get the crazy creepy crawly sensations in your legs and arms. The ones that make your legs feel like there are bugs crawling up and down your bones? There are times when I am so exhausted that I just want to sleep, and here comes the "bone bugs" (as my kids call them).
I am supposed to be going on vacation with my husband and three kids in July and am very concerned about walking around and falling. Also, I am signed up to do a Lupus walk in September, but don't know how I am going to walk it feeling the way I do right now.
I have decided to give up floor nursing soon and have returned to school to get my master's in education. I know that I will not be able to work as a bedside nurse much longer. 12 hour shifts are a killer, especially night shift.
Where did you rent a wheelchair from and how did you find out about it?
Your sense of humor is wonderful. Thank you so much for your post. I am so sick of feeling this way and was ready to give up. I was even praying for the disease to take over and let me die, but knowing I am not alone and that people are facing the same things I do is so helpful in keeping me going.

purple_butterfly
06-03-2009, 02:22 AM
I know how you feel. It is hard to be happy and not to yell alot when you feel so lousy. I try to keep my chin up and smile through the pain because it scares the hell out of my kids to see me this way. I have to work through this because I make more money than my husband and without my pay, we would lose everything. I thought about going to the ER yesterday, but I am afraid I will be looked at like I am drug seeking since this has happened before and I was dismissed by the docs & nurses.
A co-worker was trying to help me because she saw how much pain I was in, and I yelled at her to quite treating me like a cripple. I am constantly appologizing for myself.

nesne1
06-04-2009, 04:23 AM
Maria's post was inspirational. How tiring the pain can be. I have just screamed and sworn at times. But humour definitely helps things. It's just hard to laugh when you are prevented from doing things you love. Wishing you all painless nights xo

nesne1
06-04-2009, 10:02 PM
Can anyone please explain to me the difference between Lupus and other connective tissue diseases? Also what are these other connective tissue diseases. If the doctor says you test negative for lupus but you have a connective tissue disease what does that even mean? Anyone? Hope u r all doing ok today.

nesne1
06-10-2009, 02:45 AM
Hi All- Just to update I am having my MRI tomorrow to test for MS. I should get the results on Friday. I have started to see a new rheumatologist who seems more helpful. I have reduced my predisolone for the tests but am doing ok I think the planquenil must have started to work?? I'm not in pain the way I was and my tremors etc seem under control. I'm looking forward to feeling better, going back to work and fingers crossed maybe getting some answers. Hope everyone else is doing ok x

mountaindreamer
06-10-2009, 06:57 AM
wow nesne1, hopefully you will have some questions answered this week. I know you are relieved that this time has come, but i am also sure that you are a little frightened about the results. Please know we are here no matter what you find out....i hope it is good news.

what time on thursday is your mri....one day turn around time is quick, i did not know that they could get the results to you this quickly. glad you don't have to wait over the weekend.

nesne1
06-12-2009, 07:58 PM
I got my MRI results back yesterday. It was just a day turnaround which is good because I had to wait three weeks to have the MRI. It may be quicker in Australia than America I'm not sure. Unfortunately I have a lesion on my brain showing demyelination which indicates I have MS. :-( At least I know I guess... Thanks to everyone on this forum that has answered my questions and thing. I guess I will look for a more appropriate forum for the things I am facing now but I have appreciated the support. Turns out the medication I am on is not really of any use to me with the exception maybe of the steroids... Good luck to everyone else . xoxox

SandyR
06-12-2009, 09:08 PM
wow nesne! I am sorry and relieved for you at the same time. Sorry about knowing it's MS and relieved that you at least know now. My aunt has MS and has for 20+ years. If you didn't know her, you wouldn't even realize she was sick at first. Thanks to all the advancements of the MS Society & the new drug therapies she has tried, she is able to lead a full life. The only restriction she has is no driving b/c when she flares, she has a tendancy to lose vision in one eye. She's still walking, she's chasing around her grandchildren and great nephews (she babysits them), she's got her friends and family and she's living life to the fullest. Heck, she's living a fuller life then half the people I know! If she can do all this with 20 years of MS, I know you will do even better. I wish you all the best in your journey towards living well! Keep the faith and hope.
Sandy

nesne1
06-15-2009, 06:28 PM
Hey Sandy, Thanks for sharing that with me. Well I'm back.. literally... to the start. I saw the neurologist yesterday and despite the fact that my MRI shows a lesion of demylination that is suspicious there is not enough evidence to diagnose me with MS at this stage meaning I can't start taking meds. She indicated it was a possiblity some kind of lupus or connective tissue disease could have done this. I'm stuck. I have to have an MRI again in 6 months to check for further deterioration. In the interim she is leaving my treatement to the rheumatologist. What a rollercoaster I am on...

mountaindreamer
06-15-2009, 08:30 PM
oh nesne1,

i can't believe this is happening to you, but i am glad you are back....i was truly sorry when you said you were leaving us. I am sure you have read some of Rob's stories about being diagnosed with lupus and MS, it has to be an incredibly trying process. Just hang in there, get back into your rheumy, and things will start falling into place. You might want to call your rheumy and see if he/she wants you to go ahead and start back on your lupus meds....hopefully you will feel better really soon. It is so very difficult to see all of these drs., and have all of these tests, when you feel so bad from flares.

Hope you get some good sleep tonight...

nesne1
06-15-2009, 09:06 PM
Thanks for that. I am still on my lupus meds as I hadn't seen the neuro to take me off them and my gp couldn't advise me whether I could stop taking them suddenly. :wideeyed:

Saysusie
06-16-2009, 09:55 AM
Nesne1;
I am so sorry to hear that you've been diagnosed with MS. I am even more sorry to hear that you will be leaving us. There are several members here who have both Lupus and MS who might still be of some help to you. Especially given the fact that both disorders are auto-immune disorders and that is what this site is for.
However, whatever you choose to do, please remember that we will still be here for you whenever you need us. I am sending you hugs of understanding!

Peace and Blessings
Namaste
Saysusie

nesne1
06-16-2009, 05:56 PM
I haven't been diagnosed with MS. My MRI test results indicated I could have it but the demylination was not extensive enough to prove it. I have to do more neuro tests and a repeat MRI in 6 months to see what it shows. In the interim my rheumatologist will be prescribing medication for my symptoms. I will be staying on the forum for now.

mountaindreamer
06-16-2009, 07:22 PM
hi again,

so sorry you are in limbo with a diagnosis, but i am very glad that you will remain with us.

SandyR
06-16-2009, 07:34 PM
nesne, I'm glad to hear that you don't have MS but I am sorry to hear that means you are still answerless. I think misdiagnosing MS might be more common then people think. Someone else I know had been diagnosed with MS 10 years ago and took all the meds for that time. They gave her a lot of MS side effects (uncoordinated walking, trouble with eyes, memory issues, etc). She went for her standard check up a few months back and the doc said, you don't have MS. You never did. We think what we were seeing on your xray was some brain trauma from the car accident you had a few months before your first brain scan. Imagine that! She lived 10 years on horrible meds thinking she was suffering from an incurable condition with all these side effects that were caused by the horrible meds! I'm glad your doctor was cautious and wanted to double check for demylinationwith you before starting you on the meds. I hope you get some answers soon! I sure do understand how frustrating that can be.

nesne1
06-17-2009, 10:16 PM
I am glad there is still a small chance I don't have MS and I don't want to start on meds if it's not. I'm actually glad for the first time not to know what's happening because I think it's better for my mental health. I freaked out when I thought the test results were conclusive. Also, I don't have the pressure of convinving the drs there is something wrong with me because my tests are already telling them that. To get a diagnosis I will need to get sicker so who needs a label I say? Happy as I am at the minute? Functioning but slightly puffy...