New here not dx yet

General
1

Hi I'm new here. I haven't been diagnosised yet and and really getting to the point of giving up thinking this is just going to be my life. I know Doctor's I've worked with many in my short time as a medical assistant which i had to give up due to not being able to pump up a blood pressure cuff any longer. If I can't do my job and help earn money what good am I. My family doctor sent me to rheumatologist who pointed at my Fibromyalgia I've had this diagnosis for years and it's nothing like what i am feeling now it wouldn't just hit me like this. So family sent me to Neurologist again to rule out MS (my sister has MS) that doctor even said no my syptoms point to Lupus. So I went back to family doctor and told him both you and neuro think it's Lupus but I'm not getting that from rheum. He than asked who i was seeing since where he use to be working likes to set his patients up with doctor's he didn't ask his patients to see and i told him he even told me to my face he doesn't like that doctor and he would now send me to another if i felt i needed it. Grant it the guy has no bed side manor and I don't like him or his office they don't send letters or even blood work results out to other doctor's even when i called and asked them to be sent. Anyway I have a follow up appointment at the end of the month to get the results and I'm just not feeling like this is the right doctor for me. I have a feeling he's going to tell me it's all in my head. But since i saw him in April many more symptoms have come out and i'm hoping my list will help get me answers. All I want at this point is a diagnosis. It will be my 16th wedding anniversary this week and my husband asked me what i wanted i said a diagnosis. But he can't give me that!

I would like to hear your thoughts i will include some of the symptoms i've been having and if you could tell me what you think is it worth going to see another doctor if he doesn't want to talk to me about something other than fibromyalgia.

Forgetfulness Is getting worse twice in 3 days I left stove on after cooking Son found it before he went to bed.

Forgetfulness is feeling much worse I can’t remember what I did from one day to the next if I don’t put appointments in my phone and check it a few times a day I don’t remember them.

For some time now I’ve been seeing things that aren’t there. Bugs crawling on walls big dirt spots on ceiling words all over the ceiling

Red rash over nose and cheeks

Feeling of electrical shocks in my hands and feet at times.

Black and blues from no where

Eyes itch more with discharge in corners by the nose.

Choking on food to the point of almost passing out.

Fatigue is horrible I sleep most of the day and night

Headaches daily

Really bad foot pain unable to walk on left foot without support but still even with hurts

Burning pain also in foot

Swelling in feet and hands

Tremors worse including legs now

Fingers numb

Sob most of time

Itch all over oh my itch is unbearable anything that can help with this would help i've tried allergy pills it doesn't work...

Right side of face tingles

Rash at back of neck is back.

Memory loss forgetting stuff from past

Can’t concentrate

Lymph node in neck swollen size of pea pinch away from rash

*went to knoebles grove 7-25-12 extreamly shakey, heart racing, sob, numbness on right side of face between eye and mouth, felt like I should go to hospital Grad. Slowly got better didn’t go to hospital.

Numbness and drained feeling in right arm

Woke up with heart burn from sleep

Fell off lawn tractor

Did have hair loss years ago where the back of my hair would fall out and wouldn’t grow back for a long while

Going to the bathroom more often

thanks for the help if you are still reading thank you for reading my long note.

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I wish you all the best with you diagnosis. I have many of you symptoms and I hope you can get some medication soon, as I will help you cope better. Everyone is worth something to someone, so please don’t give up hope. I’m lucky I have family support, so I hope with everything I have that you do as wel.

Take care and thinking of you.

Aussie Karen

3

Hello Diannagarr,

I'm just surprised your gp and neuro have'nt reacted with medication as they say that's lupus because it's not always down to a rheumo to submit drugs other specialists can.

I have a rheumo like yourself...where yours is being stubborn in diagnosis, mine was opposite but was stubborn with helping me with stronger meds so my dermo took it on his hands to help and now i'm going to see another rheumo through the perforamnce i have with him...if you don't get no benefit from your next visit, go for another rheumo as we're all entitled to 2nd opinions.

Regarding your symptoms...memory loss is one on the list and it's called foggyness and i also get that which causes very bad concentration on what your doing.

Red rash over nose and cheeks...sounds like the malar rash (Butterfly rash)

Alot of some of your symptoms sound like you have Raynauds.

That lymph node you have, you should be asked to be sent to ENT as i have them and had one removed from by my ear and throat..started off as pea in the throat and soon growed into a lump.

I hope your taking photo's of your face rash to show the rheumo and also list these symptoms for when you go...i'm not a doctor just a patient like yourself and you've got enough symptoms showing there for a proper diagnosis.

All my love Terri xxx

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Thanks everyone, I see my gp on the 20th and I will be asking him for meds for the itch at least i can't handle it much longer. Thou today i'm not as itchy but i'm knocked down very tired can't much lift my arms as i'm so tired. back hurts, and seems like i'm coming down with a sinus infection but not sure. I didn't think about taken pictures of my rash i do have seen a eye doctor when my gp suggested i see them for the eye itch and he suggested dry eye and rash so it has been documented by a doctor just not sure if that will be enough. my gp also gave me more meds for the depression but it made me more tired and i stopped taken them. which i will say something to him on the 20th about that also. the lymph node was only swollen when i had the rash on my neck so not sure if it was related to that or not. it's not there any longer i just write my symptoms down when they happen if i don't i would forget everything that has happen so far. I hate when doctors ask me to tell them after i gave them the list i can't remember everything. I've learned to make two copies. Thanks for the help Diana

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Hello Diana,

Yes see your gp about the itching because he can apply something to ease that at least for you.

Diana although you've not been properly diagnosed...if you are lupus related not all your problems are put down to sinus issues especially when it comes to your back...i have the lupus play madness with my back and make my lungs swell....anything else Diana that kicks off in a rash form take several phot's and make sure they're clear enough for him to see them.

Well if it's been noted about dry eye and itching which i have with my sjogrens Disease...that's the main one that causes it...my eyes are dried out through it now but read this link and this alone will tell you about sjogrens and the body in general.

http://www.medfriendly.com/sjogrenssyndrome.html

Oh so you suffer with depression also, that's another symptom Lupus causes besides it coming on anyone natural but if you are depressed Lupus loves depression and thrieves off it and makes your symptoms feel double what they are.

Diana it would help you, if you had someone to take with you at your oppointment as back up to help you along the way with the doctor.

Your welcome for the help from us all but please read the sjogrens because besides it affecting your eyes, it affects your joints etc.

Love Terri xxxx

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I was put on depression meds for the fibromyaglia that my gp at the time diagnosised me with. Thou he didn't run any test at the time just went off the fact that my sister also has it. Than prob. 10 years later was tested for lyme and found out i had that for a number of years and it was in the advanced stage so the gp i had before and dx me with fibromyaglia without any test could have missed that it was lyme or i could have it. It's hard to say. I did check out the sjogrens due to someone else suggesting it to me due to the chocking also i know my eyes are dry alot now and i'm having to use drops they feel like marbles in the sockets sometimes. with the rash on the face does anyone else's burn. Mine has been burning the last two days.

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Diana,

It sounds like you have a rheumo who's just playing guessing games instead of looking at his patients properly.

I don't get chocking with sjogren's disease and it's very high in my blood and is just over riding the lupus, as they've told me it's like they're fighting one another for control of my body but i use eye drops and put them in alot through the day.

Well i've been looking at what you've said and Lyme, Lupus and fibro carry alot of similar health issues and you may find this link very interesting on all 3 issues.

http://lymediseaseguide.org/lyme-disease-lupus