Discussions By Condition: I cannot get a diagnosis.

Need Help

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: trayota07
  • November 8, 2006
  • 04:07 PM

Hi, I am a 28 year old female with two children. Approx. 2 yrs ago I began having numbness and tingling in my toes, at the time I thought it was because of my shoes. Then it began spreading. I have always felt fatigued but thought I was lazy. Close to a year ago now I started having problems swallowing, sometimes I couldnt remember how to then other times it would be very painfull. At this time my muscles began feeling very weak. somedays Its hard to hold the phone to my ear without my arm hurting and there are days I literally drag myself up steps. I had also started having these horrible pains behind my eyes and also blurry vision- all of these things come and go. About a week ago I went to the Doctor and my bp was 80/48, since that day I my legs have been very wobbly like my knees shake esp. when I walk up or down steps. Well Monday I went for an MRI, my nurse practioner was thinking MS, I was and still am, but today whoever read it said it was normal.

Is it possible for these results to normal and still have MS could they have been misread has anyone else had these symptoms and it was something else I dont have insurance and I really could use some ideas on where and what to do next

Very frustrated thank you all

Tracy

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6 Replies:

  • Hi Tracy, I've been in that boat too. I've been trying to get a diagnosis for almost 4 years, and the first thing the doctors suspected was MS. The first MRI came back negative, but my doctors did a follow up MRI 3 years later (this past February), which also came back negative. I've been told by all my doctors that MS often doesn't show up on an MRI within the first few months that you have symptoms, but that after 2 or 3 years, something should be seen on an MRI, and/or I should have developed additional symptoms that would point towards MS (loss of feeling or movement in a limb, loss of balance, loss of bladder control, etc). So MS has been ruled out for me, unless I develop new symptoms. Coming back from the "we think it might be MS... ok, maybe not" rollercoaster was pretty ******n me, and I've been fighting for a diagnosis ever since. So I think it's natural if you want to hold on to the idea that it's MS long past the point that the doctors rule it out. If you had gotten the MS diagnosis, that would give a name to all the weird symptoms you've been having, which is a relief in itself. Also, MS is something that a lot of people know about, which makes it easier to say than just "I don't know what I have, but yes I feel crappy all the time, and no I'm not a hypochondriac." So I understand wanting to hold on to the "possible MS" diagnosis, but IMO -- having been there -- you should let go of that as quickly and gracefully as possible, so that you can move on to getting the real diagnosis. After 2 years of symptoms, the chances are high that you would have something show up on your MRI, if it was MS. Most doctors will probably consider MS completely and totally ruled out. If you move on from the MS idea, the worse case scenario is that you work with doctors for a year or two to try to get a diagnosis, and then come back around to the MS idea, which you can have them re-check for then. Best case scenario is that by moving on from the MS idea, you'll help your doctors find your real diagnosis, which they can then start treating. If you do have MS, more symptoms will show up in time, but if it isn't, you'll be prolonging the time until you can get your real diagnosis. I hope none of that came out too harshly. I'm really only trying to help, and I know how hard it is. Going through the rollercoaster of not knowing what's wrong, to a medical professional saying "possible MS" (I sat in my car and cried after that particular doctor visit), then the MRI, then waiting for the MRI results (almost a month for me), then having those same medical professionals come back and say "not MS" and still not knowing what's wrong with you... I've been there, and in retrospect, I spent way too much time fixated on the idea of MS, rather than trying to track down my real diagnosis. From your symptoms, I would say ask them to check your thyroid levels. Fatigue, muscle weakness, low blood pressure, mental confusion, and painful swallowing are all symptoms of hypothyroid. Something to look into, anyway. ~Ryot
    Anonymous 42789 Replies
    • November 9, 2006
    • 02:10 AM
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  • Hey Ryot, Not harsh at all glad to hear I am not the only one. My life is really starting to fall apart because of it, at least my goals in life are. Im almost finished with my degree and because of my abscences my professor is suggesting I withdrawl. Its funny really she is a occupational therapist, ya know someone who should have some sort of compassion and I just dont feel she understands. So what types of Dr's have you been to? Have they ever made you feel it's all in your head? May I ask how old you are and things of that nature? Do you feel it has interupted your life, job, relationships and such? Thank You so Much for your reply!!Hope to hear from you again soon, Tracy
    trayota07 2 Replies
    • November 9, 2006
    • 06:17 PM
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  • Ryot, One more thing, the Rad Tech that did my MRI told me he knew one lady that had been close to 4 yrs, finally she went out of state to a better dr and received her diagnosis!! So hang in there! Many prayers Tracy
    trayota07 2 Replies
    • November 9, 2006
    • 06:21 PM
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  • Hi Tracy, I'm 25, married but no children -- I've actually had more than a couple of doctors tell me that I "must not attempt an unsupervised pregnancy" because I would need to go off several of my medications first, and have the dosage changed on others (the meds for hypothyroid, actually) if I were to get pregnant. I get sick of hearing that particular speech from doctors. :P Oh, and I'm 5'2" and about 115 lbs, which I only mention because I once had a doctor try to imply that my problems are because I'm depressed and overweight. Yeah, she was fired real quick. As far as doctors, I've been to endocrinologists, neurologists, rheumatologists, and pain specialists primarily, along with my regular family doctor and the specialists for all the tests. My husband and I have moved three times in the four years since this started (though we just bought our first place, so hopefully we're done with that for awhile), so I've changed doctors fairly frequently. I get copies of everything from my doctors, and just haul it all around with me. I've had three really great primary care doctors, and a run of bad neurologists, with the others falling mostly in the middle somewhere. Other than the one primary care doc that tried to tell me I was in pain because I was depressed and overweight, I haven't had any doctors tell me it's all in my head. The second of my three really great primary care docs told me that because so many of my health issues are tied to my hormones, I need to stay away from drugs for depression, as they'll mask my symptoms and perhaps mess with my body's chemistry. I've certainly gone through bouts of depression with this, but I think it's more a valid situational depression than a chemical imbalance in my brain. Last winter was pretty rough health wise, I was more or less bedridden for two months which made me feel absolutely useless, had just passed the three year mark, and was tired of fighting for a diagnosis. But my husband was very supportive, and I learned how to knit so I could make hats for chemo charities while lying down, and somehow summoned up the will to get back into the diagnosis fight (a will I seem to be once again lacking lately). I guess I haven't told you much about my symptoms -- joint pain in my knees and hips primarily, along with other joints off and on, and my feet can get so cold that I'll be wearing three pairs of socks when it's 75 degrees inside. I have a handful of other small symptoms, but those are the big ones. Sitting for too long or walking/exercising for too long can make my hips and knees hurt a lot worse, so this past spring I broke down and bought a cane. I don't need it all the time, but when I do I'm glad I have it. My health is usually best in the summer, and if I catch a cold or flu I'll have a bad flare of my symptoms for at least three months (which is what had me bedridden last winter). Whatever this disease is goes through relapses and remittances, which is one of the reasons my doctors tend to think it's an autoimmune disease of some sort. I have two other autoimmune diseases (Alopecia Areata, and Hashimoto's Thyroiditis, which causes the hypothyroid issues I mentioned in my last post) and four of my five siblings have at least one autoimmune disease, so between that and my symptoms, my docs are pretty sure this is autoimmune. Because of that they won't give me a flu shot, since they aren't sure how my immune system would react. We've ruled out just about everything we can think of (MS, Lupus, Rheumatoid Arthritis, Ankylosing Spondylitis, etc). At this point, I'm researching other things to check for and the doctors are trying to manage my symptoms, while we wait for another symptom to present. As far as how this has affected the rest of my life, on the one hand it's had a huge effect, and on the other it really hasn't. I had been working for my dad's company for about a year when the symptoms first started out, and my husband and I moved out of state about five months after the symptoms started, so I've been telecommuting ever since. I have a flexible contract with my dad now, so I telecommute from home and work as many hours as I am able. I would almost certainly be telecommuting for my dad even if I wasn't ill, so it's really only the amount of work I'm able to get done that has been affected. I'm fairly certain that I couldn't hold down a regular 40 hour a week office job right now, but on the upside I'm able to take on additional consulting jobs during the summer when I'm feeling my best, and then drop back to just working for my dad during the fall and winter. It's apples to oranges, but I think my career is actually going better now than it would be if I had been working full time in an office this whole time. It has had some impact on my social life, but I'm really fine with that. There are months when I don't feel up to going out with our friends, and other times that I feel up to going out but will want to leave earlier than anyone else. My family is very supportive, though I only see them a couple of times a year. I think I freaked them out a bit with the cane this past summer, and my mom has freaked out a couple of times about how much worse I look than the last time she saw me (always great to hear). But even if I wasn't sick, I think my husband and I would pretty much be home bodies anyway, so I don't think I would be doing anything all that much differently. As for my goals... I've had one active autoimmune disease or another solidly since I was 12 years old, so I've gotten fairly used to adjusting my goals around whatever my current health issues are. I'm quite happy with my career goals and my progression towards them, to the point that I don't think I would take a lucrative full-time offer even if I could manage the hours. My husband and I have realized that it's unlikely that we'll ever have children, but with our first niece or nephew on the way, we're trying to adjust to the idea of being "the cool aunt and uncle". Because of that, I've made a couple of deals with my husband as it relates to family: We will always spend Christmas with one of our two families. Our next house will have a guest bedroom so family can come and stay with us (we live in a pretty prime southern California vacation area anyway). We will go to every one of my siblings' weddings (one down, four to go). We will always send gifts and call on our relatives' birthdays. And for my 30th birthday, I will require a small puppy dog. ;) And in return, I won't fixate on our lack of children. We'll see how well that works. :P Anyway, I guess what I'm trying to say is that I realize that I have shaped my life and my goals around my health, but other than the stress and depression that comes with being sick, I'm really quite happy. I've been blessed in every other area of my life, and I've been blessed with good doctors. I have a job that I love and can still do while being sick. I have a family who loves and supports me, and a husband who "always walks at my speed", as a friend once put it. I've been extremely blessed, and even though I'm still holding out for the blessing of a diagnosis, I know I don't really have any room to complain. But it's taken me awhile to get to this place. I think going through all the stages of grief -- anger, depression, negotiating, etc -- is natural with a chronic disease, and getting through that is a process. One of the major things for me was giving up on the idea of being "normal". This is what my life is, this is what my body is, and I can either form my life around that and be as happy as I can, or I can focus on everything that I can't do, and be depressed. As long as I have the support of my family, and as long as I can do something useful with myself (the knitting helps immensely), I'll be fine. I hope you are able to finish your degree, and I think you're right, your professor should be more understanding about this. It's only been in this last year that I've started allowing my illness to show in public (up until then on my family and best friend knew that I was ill at all), and I have to say that it's been empowering. You didn't ask for this, and you aren't doing it for attention. You have legitimate health concerns. For me, the key has been asking for what I need when I need it, and not hiding how I'm feeling but not going out of my way to get people to notice either. But your balance point may be different. Well, I seem to have rambled for quite awhile. I hope some of this helps, and hope to hear from you soon. ~Ryot
    Anonymous 42789 Replies
    • November 9, 2006
    • 07:52 PM
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  • Tracy;I have had the same symptoms now for ten years. It started after I had my first child. ( I have four now ) Just some thoughts;MS symptoms can get worse after having a baby or for others better. You could go MANY years with symptoms and not have it show on your MRI. You may want to ask the Drs about getting a spinal tap. My Drs will not confirm MS, but will treat me as though I have it ( when I have surgery, etc.. ) One Dr. said I have Fibromilagia. They have very similar symptoms. The advise I can give you is, Try very hard not to worry, but every two years get re-tested. Remember you have to be your own advocate.Most important, and I have changed my life style. TAKE CARE OF YOURSELF. I have found that excersice daily or every other day, has made a huge difference. If it is MS or Fibromilagia; excersice is very important. Start off slow, and work yourself up. I am so shocked how excersice has changed me. It hurt like ***l at first, but way worth it! I am in so much pain when I do not excersice for a week.Good Luck!~Kate
    Anonymous 42789 Replies
    • November 10, 2006
    • 07:59 PM
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  • Hi Tracy, Lately a number of friends of mine have been diagnosed with MS. I am not sure if you have had a spinal tap, but inquire with your dr. as to whether that is a good method of diagnosis of MS or not. I do know that one of my friends had one or two spinal taps right before he got the official diagnosis. May be worth inquiring about. good luck, Karin
    bigfoot 3 Replies
    • November 10, 2006
    • 11:25 PM
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