Questions about how to figure out what is happening inside me

[Lara4228]

Diagnosed in Hamilton Ontario 3 years through a biopsy as having discoid lupus. All is good, given Olux foam and sent on my way. Moved to Edmonton Alberta. Explained to GP (with letter in hand) what I was recently diagnosed with.

Prelude before I continue...2012, diagnosed with Major depression, adult ADHD, panic attack disorder, social anxiety and OCD...quit my job. 2013, diagnosed with Cyclothymia. Ok...mental health crap is done lol. August 2013 also diagnosed with Degenerative Disc Disease.

2013-2015:

DDD now Osteoarthritis

Random and short term colds (they will last anywhere from 5 minutes to 3 hours, all types of environments, no known trigger)

Consist low white blood cell

Random pain in my knees sometimes with and without radiating and shooting pains from my hip or knee down to my feet.

Toe fungus that won't go away

Sneezing when I get stressed

Shooting pains from my ears (dr addressed it as middle ear, waiting for ENT to follow-up as different dr says inner ear)

Diarrhea for 6 months solid. Blood work, stool test, IBS meds, no weight loss rather weight gain. No diagnosis. Stopped since I've moved back to Ontario a month ago.

Yeast infection that won't go away, week 3, going back to dr this week.

Gum infection that lasts 4 months at a time (had 4 of them in 3 years).

Been assessed for fibromyalgia... Internal specialist says nay.

Waiting for a colposcopy for "abnormal bacteria" both HPV and non-HPV found.

I have severe brain fog in mornings. Severe short term memory loss (has been depleting since 2011. Fatigued at almost everything I do and my mood swings have grown in frequency and intensity in the past year.

My "terminal alopecia" has grown from 2 spots the size of a thumb nail each to large orange sized spots with 5 merging into one,plus many more budding and developing. Lesions on the side of my face leading down and behind my ears.

A lot of info, I know. I need help, am I just being overly worried? If not, how do I address these and to whom? The DR's here just seem to fluff everything off, I feel left in the dark and helpless. I do not know what to do.

I have been tested 3 times this year alone for SLE, cancer and rhumetoid. No signs.

So now what?

All comments and suggestions welcomed please!

Thanks!

Lara

[Trevamw]

Have they checked your liver enzymes ? If your engines are high you could have lupus in the liver, I have it. It's very rare. Good luck

[Lara4228 in reply to Trevamw]

Honestly, I don't know! I have had so many tests this year, I can't say. I will mention it to my Dr when I see him this week.

Thank you very much!

[Jassy11 in reply to Trevamw]

I have lupas, and recently my enzymes were high so they want me to go back for blood work. What are your symptoms?

[Lara4228 in reply to Jassy11]

Jassy11,

Essentially what I have posted initially are my symptoms. They are very erratic and not enough to really be a major problem, just enough for me to feel constant wrong bodily feelings and low day to day aches, pains, low grade depression.

[jacclaire]

I am exactly like u and all I have is a phycologist but I'm going to keep demanding to see all the relevant consultants until they are sick to death of me. I know at the dr you can get an m o t check every year but it's not good enough so each consultant will have to do one and see. Then if it brings back nothing u need to speek to your dr about putting a name on it n trying new tablets there is a person for that ur dr will know and tell your dr you would like a second opinion that always works and makes them sit up and listen. Complain about dr in writing as they have to send that off too.

[Paul_Howard Partner LUPUS UK]

Hi Lara4228 ,

Have you contacted Lupus Canada to see if they can recommend any lupus specialist doctors in your area who you could get referred to? lupuscanada.org/

[Lara4228 in reply to Paul_Howard]

Hi Paul,

I have not...yet. because I have been transient almost since I as diagnosed, I haven't got that far yet (nor really needed to until the past 14 months).

My mother has SLE, I am 99.99999% I will develop (if not already) that aspect of this.

Initially when diagnosed by my GP, I was sent immediately to an auto immune specialist at McMaster university here I'm Hamilton. He referred me to the immunologist-dermatoligist. "Apparently" and I say that without any being biased or negative, they are one of the best in the country here..

My wait time to see my dermatologist is 8 months. I don't have a GP yet, I keep seeing a walk in Dr for everything so far.

I have only moved back 4.5 weeks ago, lots to do and push for. I am hopeful but equally nervous and lack confidence. It took them 20 years to diagnose my Mother, and I am following her "health foot steps" minus the discoid, her hair thinned at 60.

Anyway, I feel as though I am being a hypochondriac with all my visits to the Dr's, but I still persist.

I just don't know how to approach them?

At any rate, I will look at the lupus Canada link a bit more studiously this time.

Thank you!

[Lara4228 in reply to Paul_Howard]

Dr. Denburg, which is on the lupus Canada, which led me to lupus Ontario, was the one I have seen and the same dr my mother also sees.

Can a walk in clinic refer me to such a specialist? The dr I have been seeing since July 1st is aware of my situation and has only referred me to the ENT and my old dermatologist.

I know I might be sounding 'dense' or skeptical or even repetitive, I just know what my mother and I had to fight through to get her finally diagnosed and the stupid walls I have been hitting along my journey now.

Afterthought question, should and when I do see an immunologist who is knowledgeable with lupus, won't they just turn me away because my blood work only shows low white cell counts and no rhumetoid? Do I continue to keep pushing to see a specialist in each symptomatic area?

Also, my mother and I do not talk often, maybe 3x a year, as I cannot handle her mental ways, she seems to portray many signs of personality disorder. Our conversations seldom end on a good note...which makes me sad, we need each other, but aren't good for each other. Everyone, including family is always wrong, mental and makes her feel inferior, oh woe is pity me. I feel bad for her, but I have to protect myself and my cyclothymia, she is a trigger. And I miss my Mom and what she can offer me through this.

[Paul_Howard Partner LUPUS UK in reply to Lara4228]

Hi Lara4228 , I'm afraid I don't know whether a walk-in clinic can refer you because I am not familiar with the Canadian healthcare system. Perhaps somebody else on here can advise you, or you could ask Lupus Canada?

I couldn't say what may happen when you see an immunologist. If you are suspected of having lupus, then you will not necessarily show rheumatoid factor, but you may show autoantibodies found in lupus. If you want more information about the diagnosis of SLE and the blood tests involved, have a look at our leaflet here - lupusuk.org.uk/wp-content/u...

[shlinde]

Hi Lara4228, I am from Canada I am actually only 6 hrs up north from you and I was diagnosed with SLE 13 years ago but had to go through a very bad and painful year before somebody finally put a name to my suffering.

Now I am at the stage in my illness where Lupus attacks my lungs and all the different specialists are at ropes end. After I made another appointment with my family doctor and told him that reading all kinds of reports and research papers from lupus specialists in the US (they have lupus clinics) my level of illness should be addressed more drastically or I will die of hemoptysis (which I have already) at one point. He told me : ....let me see what I can do I know somebody in the Lupus clinic Montreal Quebec and if you are willing I would try to get you in there.....

Yes of course I would like to go there..... I would basically go wherever as long as they know more about lupus then the standard rheumatologist or as my pulmonary specialist.

So a few days later I got an appointment in the Lupus clinic in Montreal (which I was told is amazing since it usually takes months over months of waiting to get int there). Because it is in Quebec and we are in Ontario they will work "border crossing healthcare-wise". This is no problem . I had to go to a specialist in Quebec before although I am a resident of Ontario and therefore under OHIP .

So long story short ........ demand from your doctor that you can see specialist for SLE in the Lupus Clinic at the Montreal General Hospital .

muhc.ca/clinic/lupus-clinic...

I hope this helps and please keep us posted !!

[Lara4228 in reply to shlinde]

Thank you shlinde. I will do that once I have a regular GP.

[Lara4228]

Here is an update! I have been putting my name on waiting lists to get a GP. While doing so I visited the walk in Dr again, to see how I can transfer my colposcopy transferred to Ontario (different provinces fund their own healthcare) and also asked if he can refer or guide me to a GP who has experience with auto-innmume diseases.

Lo and behold, he asked me if he can take care of me. He stated that he wants me to see him and that he wants to help me and he wants to make sure I get all the help I need!

I was so happy! The only downfall, if you even want to call it that, is that there are no appointments, walk in clinic only...no problem with me!

So now...blood work, pap smear (so he can refer me for my colposcopy) and all the fun stuff begins...again lol.

No complaints here, just smiles and looking at a beautiful blue sky dotted with some white fluffy clouds and birds chirping in the trees behind me while I type this.