To begin I will give you some background information about myself. I am a 21yo female living in Idaho, I have one child, work in health care, don't smoke and rarely drink, and have been having health problems since age 11. When I was 11 I started to have severe hip pain to the point where it was difficult to walk, my parents thought I was attention seeking and told me everyday that I was making it all up and I would get in trouble for asking for help so I stopped asking and this went untreated. Then when I was around 14 both my knees started to hurt, especially if they were bent for a long period of time. I began to have a lot of falls and fell down stairs quite often which I'm sure didn't help anything. Then around 16 my upper back gradually began to the point of being so severe the only relief I got was by laying on the floor (not so easy to do in high school). Also around this time I began to have vision problems accompanied by dizziness and vertigo which I was told was caused by being orthostatic but it didn't only happen when I went from a sitting to standing position so that can't be the reason. So I lived with these symptoms and coped the best I could until about a year or so ago when everything got more severe and was having more symptoms. Now I am having a headache on the left side of my head which has not gone away for 6mos, decreased sensation in my left leg, reynaud's syndrome in my fingers, urinary incontinence at times, bowel problems, severe muscle tremors, severe weakness in all extremities, "breakaway" strength in arms and legs, decreased ROM in almost every joint, I am unable to balance just standing let alone to do the neurological tests they ask me to do, I can not walk long distances or even stand for long periods, I can not stand on one foot, or stand on my toes, I can not walk on my toes, or my heels, I have a positive slump test, negative ANA, borderline high sed rate, neg for all hepatitis, severe vitamin D deficiency, xrays showed 12 degree scoliosis as well as spinal OA, OA of patellofemoral joints, spine MRI found bone spurs, mild bulging disks, disk desiccation, OA on all levels, partially sacralized L5 vertebrae, mild kyphosis of neck, SI joint injections helped but only for a month when it should have lasted 4mos, branch nerve block of lower spine/sacrum was unsuccessful, diagnosed with fibromyalgia, asthma, cardiac PVC's and lots of tachycardia. My physical therapist thinks I have some form of neurological disorder because of all of my neuro symptoms which I am sure I am missing some on here. She is also concerned because I have a family history of lupus, MS, and Neuromyelitis Optica aka Devic's disease. I am currently seeing a primary MD, a pain and spine doc, a rhuematologist, cardiologist, pulmonologist, medical psychologist, neuropsychologist, gastroenterologist, as well as my physical therapist. I feel like my doctors don't listen to me, they rarely even do a physical exam just throw pills at me and tell me to see a psychologist. Now I am at the point where I don't even tell doctors about my depression and difficulty coping ( which seeing as how I've gotten 17 diagnosis' in the last 5 months I don't think that that should be any suprise) because I feel like as soon as they hear that they put all their focus on that cause calling someone crazy is easier than finding out what's really wrong with them. I guess I am just looking for any suggestions on what anyone thinks this might be? Tests I should ask my dr's to do? How to get them to really listen to me? My physical therapist is doing some research also and encouraged me to do my own which makes me feel better, most dr's hate hearing the words "I read about this disease on the internet" so I've been trying to avoid doing that but I feel like my dr's are plateauing and not getting to the bottom of my neurological problems. Any suggestions on anything even if I didn't ask it would be greatly appreciated.
Well, Lady Clark, I think I might have a couple things for you. First, I am so sorry that as a child you had to live with this awful pain, and then falling down, when I think of myself at your various ages when this stuff was going on, I just want to pick you up and rock you until all your tears are gone.
Two things are going on, and unfortunately there are a lot of the usual sorts of solutions, a pill here, a shot there. Nevertheless, there are also some things that can be done that can significantly improve your quality of life. What you have are arthritis (which you already know) and Vitamin D deficiency (which you also know). And lady, that's really all you got. But this will blow your mind about Vitamin D deficiency. Not only does it goof up bone density, but it also can cause urinary incontinence, soft bones (like rickets), and asthma. Yes, I kid you not, a lot of those sort of odd bits and pieces of your symptom list come from that problem with Vit D.
Now, I have two very good websites on your arthritis. The first one is because you first noticed your hip joints being painful when you were a child, and this suggests juvenile arthritis, which is NOT the same as juvenile rheumatoid arthritis. You can read the first link and understand it very well. This kind of arthritis will often go into adulthood, which happened to you. The second link is more about the arthritis that you have specifically in your spine. See, you have joint arthritis and you have spine arthritis, which act just a little differently. So, it's good to read about how arthritis will affect the spine. Plus, BOTH websites tell you what all can be done to make you feel better.
I had said they would have the usual treatment options that you've been thru so many, and this is because arthritis is rather hard to treat. Sometimes a good rheumatologist or orthopedist can distinguish which type of arthritis you have, and this will improve what treatment to give you, which while rheumatoid arthritis does not really fit you, ARTHRITIS does, and there are many kinds of that, too. In any case, what I want to tell you is just a quick summary of some things the docs CAN do to sort of settle down this whole routine for you, and forgive me if you've already looked into what I say.
I have to assume you are now taking Vitamin D. And you probably know as much about how it should be taken with some other vits and minerals, like calcium, so that it will be absorbed by the body better. And there's diff Vit D, like D3. But what I think you should do is have a hematologist (blood pathologist) look at what is the situation with your absorption or malabsorption of Vitamin D. Some people for complex reasons in their blood (and sometimes genetics or gastro problems) simply cannot absorb some nutrients. And I'll add the simple knowledge that the sources I know about to get Vit D is eggs, milk, and sunshine. If you're lactose-intolerant, you can look up other things that have it, like fish. Which is a perfect example of people not being able to absorb certain things because of allergy or whatever, the milk thing.
And the other thing I wanted to mention is the so-called treatment you have received so far OBVIOUSLY is not helping you one bit. The number of them, however, is typical since stuff that would REALLY make a difference involve big decisions. For example, I think you could certainly stand to be wearing braces or velcro splints, anything to stabilize parts of your body that move a lot. I also think a good orthopedic surgeon could decide if perhaps internally putting in a few rods and pins to stabilize some of your bones and joints would make you feel better. And medicine, gosh, for both arthritis and bone pain, there's PLENTY of good drugs you should be taking so you can at least walk around in the yard with your children! Lyrica is great for nerve pain and any doc can prescribe that for you.
I hope some of all this will help you. And I may be wrong or I may not be telling you anything new. But I think you could pick a couple docs out of all the ones you go to, that you think are the very best, and let them work this problem in an orderly way. Best regards, GG
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