|"Never be afraid to trust an unknown future to a known God." - Corrie Ten Boom|
I have no diagnosis yet.
Well, according to my doctor, I am a medical mystery.
As you already know, my lab work came back "normal", which ruled out things like Lupus, RA, and some other things like that. They also were able to show that I had no evidence of muscle degeneration, so that's good. It leaves us with more questions than answers, but at least it's some progress.
My MRI results came back essentially normal, though we did see signs of old injuries to my lower back, evidence of my having broken my nose several times as a child (I had an astigmatism that took some time to find that resulted in me being a very clumsy child!), some results of aging or normal wear and tear on my back or possible early signs of degenerative disc disease, and evidence of issues that I've had with my back and neck for years (i.e. everything we already knew was wrong with my back and neck). They found no evidence of tumors or blood clots or pinched nerves or demyelination or anything else that could explain my symptoms, hence the reason I was labeled a medical mystery for now.
In a nutshell, we've been able to prove no brain damage, nerve damage, tumors, blood clots or lesions, but not much else.
That all sounds great, so what's the fuss?
I am still having symptoms, and a "normal" MRI doesn't necessarily rule out things like Multiple Sclerosis, Myasthenia Gravis, Hashimoto's Encephalopathy or even a rare form of migraine (or something else entirely that we've yet to consider). We've ruled out some things, but we've also not ruled *in* anything. We've entered into "rare" and "unknown" or "non-typical presentation" or "early stages of ____" territory - depending on what we find next. It doesn't mean I have something "serious", just that more testing is required.
So what are the next steps?
I am going to be seeing a neurologist whenever we can set up the appointment. That could take a few months. My doctor told me to expect more blood work, probably lumbar puncture and who knows what other types of tests once I see the neurologist.
In the mean time, he wants me to try Meloxicam and a cup of coffee when I have the weakness in my limbs (my main "scary" symptom) to see if it helps. If it does, that gives me something to tell the neurologist as that is what I do to treat my migraines. We'll see how that goes.
What are your symptoms, anyway?
I guess it would be best to give a list. I've had most of these symptoms for the last 6 or 7 months.
- Weakness in all limbs. I've had weakness in both arms and both legs. I've not had weakness in all limbs at once, generally it is just one, but I have had it in both legs at once or in my right arm and left leg, left arm and left leg, just one hand, etc. This symptom normally last for 24 hours. It had averaged about once a month, but I've had 3 bouts of weakness in the last 2 weeks in my left leg. There is no pain with the weakness. I can still bend the limb and have feeling in it, I just feel like it's useless or can't support me. If it's in my leg, I have to pretty much drag my leg. If it's in my arm, I may not be able to lift anything with that arm or grip anything well. Sometimes I have half the strength of normal, sometimes less. It varies.
- Numbness and/or tingling. This has happened in various places ranging from my limbs to my face, and generally occurs in my face. It can last for a few minutes to a few weeks. Just depends. It's normally mild.
- Changes in taste and smell. This is my newest symptom. I have smelled things that smell like cigarette smoke, burning poptarts or electric fire smell when there are none of those things around. Sometimes I taste something coppery or acidic or even something akin to pineapple. I also have had a lack of taste or smell. This has only been going on for a few weeks.
- Changes in hearing. Sometimes I feel like it is harder to hear things or make them out clearly. On Thursday, January 21st, I lost the hearing in my right ear for about 30 seconds, and now I feel like I have cotton in that ear. It kinda feels numb. I can still hear out of it, but it is slightly less than my left ear. I had the doctor check my ear when I saw him on Friday, and he told me that I had no fluid on my ear, no wax build up, no sign of infection, etc. There is no explanation for my hearing issue.
- IBS issues. I've dealt with this off and on and normally attribute it to diet, but it definitely has gotten worse recently. I have to be very careful with what I eat, as you all know, and it seems my system is more and more picky lately.
- Restless Leg Syndrome, night sweats, and/or other trouble sleeping. These things are probably some of the more obnoxious symptoms for me. It is frustrating to be exhausted and not be able to sleep due to twitching legs, feeling too hot or just can't sleep for whatever reason. It is definitely not something I'd wish on anyone!
- Minor vision issues. Every now and then, I'll have a moment when I have trouble reading something or seeing something clearly. It normally doesn't last long, and I never lose all my ability to see. I have had a few very brief periods of tunnel vision, but as I said, none of this has lasted more than a few moments at this point.
- Minor swallowing, chewing and/or talking issues. Sometimes I have trouble swallowing larger bites or pills. I always get them down, but sometimes it takes more time or effort. I've had TMJ for years, but my jaws been popping more and I've had to be more careful with what I eat (i.e. not too chewy or tough). I've also gotten laryngitis a few times not related to illness that can last anywhere from a few minutes to most of the day.
- Dizziness/lightheadedness. This normally only last moments to a few minutes, but it is out of the blue. It isn't related to standing up too fast or bending over or even eating too much sugar or anything like that. It is just random. This symptom has been happening more often in the last few weeks.
- Lack of focus. I have had this off and on for years, but it seems to be more pronounced in the last 6 months. It is very hard to concentrate at times, and sometimes I can't understand things that have made perfect sense before. I have to ask for things to be repeated or read the same things over and over again for them to click or I forget things unless I write them down right away. I can forget how to spell simple words or even how to do simple math problems. I can also lose my train of thought mid-sentence. It can be a real frustration!
- Migraine or other types of pain, specifically in my joints. I've had these for years, too, but I'll add them here as they have gotten worse in this time period. I average a migraine about once every 6 weeks or so, sometimes more often, sometimes less. I've had more joint pain in my left hand than anywhere else. This is my "least often" symptom, I'd say. The migraines are normally linked to hormone levels, but not always.
- Moodiness. Sometimes I'll find myself upset or elated for no apparent reason. I am always glad that I'm aware that my mood doesn't fit the situation and can normally get myself out of it, but not always. I also find that I cry when I normally wouldn't. I've never been an emotional person, so to feel emotional like that is uncomfortable for me. This was normally attributed to my Hashimoto's, but not always.
That's the gist of it. I am more putting this list here for my own benefit than anything else. I am very aware that there could be more than a few things going on with me and that some of things could be attributed to Fibromyalgia. We'll see what the neurologist says.
- Please pray wisdom as I see the neurologist and we decide next steps. I'm not looking forward to more doctors and more tests, but I know it is necessary. Pray that we know all the right questions to ask and get all the information we need to weigh all the options thoroughly.
- Please pray for my kiddos that they will not be scared. Seeing Mommy deal with these things, especially the weakness, can be quite scary. My 5 year old is having the hardest time with it all.
- Please pray for an accurate diagnosis and peace of mind. It's hard to have your body fight against you like mine has been doing, and it is easy to get upset and angry. I don't want to be that person. I want to trust that God knows, and find a way to live my life in a way that is pleasing to Him. I want to enjoy every day - even if it is a bad one physically. I don't want to lose my smile, as it were. I also would love for the doctors to be able to figure this out so that we can know how to proceed. If we don't get any answers, well - pray that I'll learn to live with that. :)
Thank you for all the thoughts and prayers! We appreciate them more than you know! I'll post an update when I know when I'll see the neurologist and as I know more.