Diagnosis

When I look back on my childhood it feels like I was always sick for some reason. I either had a cough or a cold or I was sneezing or I felt nauseous (I would say it was in my chest and now I’ve learned that’s acid reflux) or something. There were also times I didn’t understand what was going on with me but I knew I wasn’t feeling well. I felt “weird” as I would say and I still say sometimes now.

My first memory of “not feeling good” is probably when I was six years old. My mother says she remembers me having sick times before that but I think that’s when I started really noticing how I was feeling and how much it was affecting me. I believe I had something like 23 times of “feeling sick” in first grade. I know I missed a lot of school. I feel very fortunate that my school didn’t hold me back a grade for missing so much of it. I couldn’t help it. I would get a cold (probably more allergies than anything but we didn’t know it at the time) and then it would ALWAYS travel to my lungs and I’d start the coughing and once that started I was in for it. The cough was like a “bark cough” and I still call it that now when it happens (much more rare thanks to knowledge and medication). Lots of times there was wheezing and feeling like I just couldn’t get enough air. It really felt like there was a monster in there trying to come out. I’d wake up in the middle of the night with horrible coughs and a lot of times I couldn’t breathe through my nose which made it even worse. I was miserable.

Numerous times my parents would get me up in the middle of the night and we’d go to the Emergency Room because my cough was so bad. Numerous times we were sent home by doctors who told us there was nothing they could do. Not once did they mention that I might have asthma. Not once did anyone say that I had a sinus infection. Not once did they say there was anything they could for me except maybe give me cough medicine to knock me out…I think. I couldn’t breathe without coughing. I know they heard my wheezing. I know they heard my coughing. There was no way to miss it. I’d be in school and in public coughing like crazy and the looks I would get. Everyone thought they would catch something and that I was infectious. I couldn’t be quiet. They would say to leave a drink by my bed. They would say to give me a warm drink, that might help. They would say to give me whiskey (probably why I don’t like alcohol much at all) and I’m sure it was just to knock me out. I don’t think anyone mentioned an inhaler to at least give me some relief until I was 16. It was awful for all of us. I know my parents did the best they could for me. They tried really hard to get answers so I could have some relief. So I just kept blowing my nose and sneezing and coughing and suffering and it felt like a really vicious cycle of sickness.

It wasn’t until I was 16 (and now that I’m thinking about it probably a few years before that) when I was playing field hockey that a doctor said that perhaps I might have exercise-induced asthma. I can remember never feeling like I had enough air to do anything. So imagine running around and trying to play and starting to wheeze and run out of air. For the longest time I thought that was normal. No doctor that I could remember up until then had paid much attention and would send me away as if it was just the way it was. I just didn’t understand how the other kids/players could handle doing anything. It really was a struggle at times. I somehow just kept pushing through it. I had to deal right?

I can distinctly remember asking this doctor at 16 if me being short of breath was normal. He sat back in his chair and looked at me in deep thought. It really was monumental to be paid attention to at all about my breathing at this point. He didn’t discount what I was saying and he said he thought I might have exercise-induced asthma and to try to take a certain inhaler. I don’t even remember what it was anymore. I was blown away. I think that started my journey of being blown away about having any answers. You mean, there really is something wrong. I’m not totally out of my mind. (Well, about this anyway.). It was scary and such a relief at the same time.

So back in field hockey I’d take my inhaler when needed. My coach knew and understood and you know what? Life got a little bit easier. I wasn’t a good player really but at least I could participate and I wasn’t suffering as much. Maybe this doctor had something. I mean, my grandmother had asthma. Why wouldn’t I? But you see I only had exercise-induced asthma I thought. Using my inhaler when I exercised didn’t stop me from getting sick and coughing and blowing my nose and still wheezing.

When I was 18 I met a doctor who listened intently to what was going on with me. She pulled out a pamphlet on asthma and had my mother and I read it. I was in awe. It was describing me. It talked about the coughing and the wheezing and the sneezing and the full sinuses. I couldn’t believe it. There was an answer. That’s when I started my medical journey thinking I had asthma and starting an inhaler regimen. Not long after that I saw an allergist (hmm, wondering how much of one he really was because he didn’t address my allergies but anyway) who listened even more to me and did a breathing test that I barely passed. I forget what it was called. Turns out I was only breathing at 30% lung capacity. He couldn’t understand how I was breathing at all and functioning. He also looked in my nose (first doctor to do that I believe) and wondered how on earth I was breathing through my nose at all. So he started me on a major regimen of nasal sprays and more inhalers. I felt so much more relief. It was unbelievable.

But see that didn’t explain everything. It always felt like there was always something missing. What about the rest of the reasons I didn’t feel well? What about those times I still felt “weird” as I talked about in the beginning. I can’t explain them. I didn’t (and sometimes still don’t but think it’s connected with the lupus–diagnosed in August 2010 so how many years later?) understand them or know how to describe them or that it was abnormal. It was just the way it was. I could feel better? I also had those weird nauseous feelings in my chest as I talked about too and that didn’t help anything. I didn’t know that’s what acid reflux felt like. AND my cough and sinus issues were still not really resolved. To really confuse the story, there is still a big discrepancy between all of my doctors past and present (and heck probably future) about whether I have had asthma, if I have the kind that comes and goes (apparently it can do that–I had no idea), if I have it now (no inhaler since I think December 2010) or if it was JUST sinus issues with post nasal drip being the major culprit all of these years (for a much later Blog…) or what it is.

This is how I lived until I was 25 and the MS symptoms started. I’m still convinced I was feeling lupus at that point too but it hadn’t been clearly detected yet. I believe I have been feeling some sort of lupus or connective tissue disorder/disease symptoms since I was at least 6 years old.

Writing all of this really helps me see how far back my resentments go about not feeling well. It helps me understand that my body needs lots of love and it will take as long as it needs to to get better now that so many of the puzzle pieces are falling into place. I can also see how much trust I lost in any medical professionals way before trying to get an MS diagnosis or whatever it was going to be in 2002. I knew that I had to ask questions and that blowing me off didn’t help anything. The past experience told me to keep on it, that something wasn’t right. Tingling on the bottom of my feet wasn’t normal. Really. Plus, I didn’t have an awful childhood and wasn’t completely miserable. I was still a kid who did fun things. It was just really hard physically quite a bit. Now I know why I’m so tired of being sick and tired.

OK. I feel like I can get on with the rest of the Diagnosis story. I just had to relive all of that a bit first.

Looks like I’m finally feeling up to writing the next part of my Diagnosis story. I kept thinking I didn’t want to write about it today but my mind keeps going there so I guess I had better get it out.

After experiencing what I felt was complete ignorance from the first two Neurologists, I wasn’t sure what to do. A lot of that summer of 2002 is a blur. I realize now I probably wasn’t feeling that well. Summers are my worst time of year for symptoms. I feel heat fatigue from multiple sclerosis and that is my worst symptom. It doesn’t take me long to feel hot. Once I feel hot the heat acts as a conductor to my nerves and the messages get all mixed up (even more) and my body gets really confused, magnifying all physical symptoms I may be already feeling, and tells my brain that I’m feeling crappy. Crappy is whole lots of bunches of types of fatigue. It’s various types of pain. It’s tingling. It’s stiffness. You name the MS symptom and I feel it. Suddenly…everything…is…in…slow…motion. I feel like a different person. EVERYTHING feels like a major effort. The body can go through pseudo-exacerbations (exacerbations are when the MS freaks out in the body–more on that in a future Blog) and yet no damage is done. It’s REAL though. It’s not all in our minds. We with MS are not imagining it.

And then there’s lupus and heat. Heat doesn’t directly affect lupus but if our bodies don’t like heat in general it will affect it in a roundabout way. What does happen, though, is that lupus and the sun don’t get along. It is as if our bodies are allergic to the sun. We with lupus (STILL CAN’T BELIEVE I HAVE BOTH DISEASES) can get really itchy. We can start feeling tons of BLAH, we can feel lots of types of achy, tons of various fatigue issues (heaviness is a big one), our joints can hurt a lot, we get sensitive to light and the list goes on. As someone with lupus, it is best for me to stay as out of the sun and the UV rays AS MUCH AS POSSIBLE. My current Rheumatologist couldn’t stress that enough when I was first diagnosed with lupus in August of 2010. STAY OUT OF THE SUN is what she told me over and over. I now have to wear high quality sunscreen all over, try to wear longer sleeves (hard to do when my arms get hot with MS and symptoms react), wear pants and no shorts (I compromise with capri pants a lot) and hats. It’s all about hats. Sun sensitivity otherwise known as photosensitivity are pretty dangerous for those of us with lupus. We just gotta be really careful. So if you add up MS and lupus together in the summer then that is a really BAD combination. We are talking about the sun setting off the lupus and making me EXTRA HOT and sensitive and when I’m hot the MS acts up and I am in for it.

So really, how did I feel during that summer of 2002? I don’t remember. Why? I’m guessing it’s because my multiple sclerosis was acting up in the heat (and I didn’t know I had it) and I have a big theory that I had lupus then too. Actually, I think I’ve had lupus or something like lupus (as in another sort of connective tissue disease) since I was six-years-old. I can think back to instances when I felt really strange symptoms and wondered what was wrong with me and thought it “mustbe normal” because I couldn’t explain it (there are not enough words to describe physical symptoms and sensations. I struggle with that all of the time.) and this happened all the way until almost two years ago. That summer had to have been a real struggle for me because I didn’t know about my health but did I notice? Of course not. Not enough for me to do anything about it. I was twenty-five. I had the world to conquer. This was it. I pushed so hard and was a go go go type of person (I still am. I work really hard at slowing that down.) and there was no time to stop.

I know I went to other doctor appointments and had other tests done. I had an HMO at the time so it was slow-going with getting anything done due to all the approvals and referrals needed and trying to find my way through the maze of red tape. I was starting to become an expert at having blood tests done and trying not to get too worried about the outcome EVERY time there was a new test. I think it is important to note that it was NEVER brought up to me during that time to do an MRI until October of 2002 but I will get to that in another Blog I think. It took the doctors six months to finally get the idea that PERHAPS it was time to have an MRI done. Plus I think I went to a Dermatologist at the time (not sure how I found my way there now) who reminded me of a robot with glasses. Makes you feel all warm and fuzzy inside doesn’t it? He looked at some weird spots on my back and thought it might be skin cancer (What the heck?!!!–was all I kept thinking) and didn’t want to do any biopsies of it because it probably wasn’t (Hmm. HMO influence again? Wouldn’t want to try to have another test done and spend the money…) anything serious and he sent me on my way. Scary!! It took a therapist I was seeing then to convince me that it was BETTER TO KNOW THAN NOT TO KNOW. True words of wisdom I still use to this day. If I didn’t know then I’d always wonder and I couldn’t take any chances. Skin cancer is not something to just brush aside. Imagine. Ugh. So I did have the biopsy done (freaking out the whole time) and found out I didn’t have skin cancer but that I had a hair follicle issue. OH. Well. That’s a bit different than cancer. And boy it sure was nice to have that answer.

I vaguely remember sometime during that summer, going to see an Infectious Disease Specialist (have seen two on my health journey and am no impressed) because where I come from, New Hampshire (and in Los Angeles, CA at this doctor), there are lots of yucky ticks who will bite and spread lyme disease and that maybe the tingling was coming from that. In fact, I think I had a generic blood test done to check for that with another doctor and it came back as positive. OK. So I had lyme disease (inside I know I was freaking out but at least I had an answer I thought). I went through the HMO rigamarole yet again and finally got in to see this no personality doctor. The doctor took one glance at me (sure was thorough I tell ya) and decided that I didn’t have it. I insisted that he take a real look at me. He asked me if I ever had the red ring around the bite or anything and I said no, that I didn’t remember being bitten anyway. He shook his head at all of this and said that the generic blood tests for lyme disease usually have a false positive so not to believe that. WHAT THE? What does that mean? Why is the test done then? Why put us through that? He still seemed to brush me off but with some pushing from me (yes, thank goodness I was assertive and stubborn) he did a more intricate blood test to find out more that he trusted would be accurate and it came back negative. Just as he thought right? Well good for him. Gold star for proving he’s right but now what? So why do I have tingling on the bottom of my feet again? CAN SOMEONE PLEASE TELL ME THAT? These were all thoughts I was having. No wonder the summer was a blur. There was a lot of struggle (or crap) like that going on. Very frustrating.

I think it was sometime in the late summer of 2002 that I first met the Heroine Doctor of my story, the first Rheumatologist I ever met. She was this really nice older lady who took me seriously. She listened, she tested me, she looked at my hands and joints. She scrutinized me and really stared at my physical features to see if she saw anything weird like any rashes or irritated joints. I HAD NO IDEA WHAT SHE WAS DOING OR WHAT SHE WAS UP TO. It was pretty scary but she was really nice and compassionate and told me not to worry and she’d help me figure this out since no one else would. I believe she herself had been going through some really serious health problems and understood what it’s like to go through the process of not finding out and all of the fear that it generated.

Some of those blood test results did come back as positives of certain elements (I’ve learned that it’s all about elements of the blood that come together a lot of times for diagnoses but I had no idea what on earth she meant) but she really checked me out and just couldn’t diagnose me with lupus at the time. I remember she apologized profusely for that. She said I should get ready to look for it and think of it for the future. That there are something like eleven things that indicate lupus and you have to have seven of them or something for it to be a positive clinical lupus diagnosis and I only had four or something. I can’t remember the exact details. What I do remember is that she tried really really hard to get me answers and do for me what she could. She was up front with me and she listened. That’s a big thing. She was a true listener. I wish more doctors LISTENED. I try to remember when I think back on that experience that this was almost ten years ago. That is a long time ago when it comes to medical science. They have made great advances and are now able to find out more information and they have so much more knowledge now than they did back then. So she asked me about my symptoms and I didn’t know what the heck she was talking about and told her at this point that the tingling that I had been feeling on the bottom of my feet since April of 2002 was not constant and would come and go (Hmm. A sign of relapsing-remitting multiple sclerosis maybe?) and that I didn’t think I was feeling anymore symptoms. (I’m sure I was actually. I was in denial. Don’t stop me. There is nothing wrong. I was tired. Aren’t we all? I had some pains. Wasn’t I getting old? I was twenty-five after all. I was clearly already showing signs “old” wasn’t I? OM…the NOW Me says probably not…). So she told me to try to take care of myself and come back if anything else came up. We’d figure this out together.

I did end up making an appointment to see her again in October of 2002. More to come in the next Diagnosis Blog…

Thank you all for reading. Writing about this brings up a lot of feelings and memories that are hard to process but since I’ve been doing this writing it has really helped…