Aa
Undiagnosed
Hello,
I need a little help figuring out some really strange symptoms that have bothered me for several months now. I started with hand tingling, which has now spread to my arms, legs, tongue and head. At this point I have full body head to toe tingles continuously, with varying degrees of sensations. Along with the tingles, I have had bugs or worms crawling on me sensations that literally kept me awake at night.
In March, I completely lost my appetite for three weeks, and at the same time had a golfball sized lump feeling in my throat. It was a little hard to swallow. After losing 15 pounds in three weeks (Bonus!), my appetite came back, the lump went away, and then I noticed when I swallowed I could only feel one side of my throat muscles.
Then I had an electric shock I described as an intense and forceful, buzzing electrical shock that ran from the crown of my head down to my tailbone. I noticed my ears were ringing more often, I kept looking for new reading glasses, and had a few new muscle jerks in my arms and legs.
Several weeks ago, I nearly passed out three times at home and once at yoga class within a 2 week period. At that yoga class I noticed when we were lying flat on our mats on the floor, I was leaning far to the left and could't use the top of my left leg muscles to push myself back to centered. It was an eerie feeling and I thought stroke ? And of ignored it and moved on (life is so busy).
The muscle jerking is uncomfortable and inconvient at this point and seems to happen when I am about to do something. If I am working and about to move my mouse, my arm may jerk uncontrollably.
Everything seemed to escalate to a point in June. My left leg seemed to be weaker and my left foot didnt want to pick up like usual. I actually tripped and fell flat on my stomach while running. Then, my left knee didnt want to lock. My lightheadedness went from occasionally to continuously and the ringing in my ears is conituous as well. I am asking my kids to look at me when they talk to me. I kept having to hold onto things around my home because of dizziness and lightheadedness when I turned too quickly, and had to keep side-stepping to keep from falling over while I was bumping into doorways.
For seveal months I felt as though I were standing on a buzzing wire that was so uncomfortable that I dropped between 15-20 lbs int he month of May without trying. And yes I know that's not healthy weight loss. Now, however, it is either going away or I'm getting used to it.
And finally, after a hot shower several weeks ago, I literally could not walk for about 30 mintues until my left leg would work again and my right leg cramps went away. This was the culmination of several months of all of these symptoms which have all but completely subsided at this point. Now I have that constant ear ringing, prickly tingling, episodes of lightheadedness and a light buzzing on my insides. Still no appetite and still down an easy 20 lbs from May.
My PCP ordered an MRI of the head which was negative. Now I am waiting to see the Neurologist but still don't have an appoinment scheduled as they are supposed to call me.
Thanks,
Marell
I need a little help figuring out some really strange symptoms that have bothered me for several months now. I started with hand tingling, which has now spread to my arms, legs, tongue and head. At this point I have full body head to toe tingles continuously, with varying degrees of sensations. Along with the tingles, I have had bugs or worms crawling on me sensations that literally kept me awake at night.
In March, I completely lost my appetite for three weeks, and at the same time had a golfball sized lump feeling in my throat. It was a little hard to swallow. After losing 15 pounds in three weeks (Bonus!), my appetite came back, the lump went away, and then I noticed when I swallowed I could only feel one side of my throat muscles.
Then I had an electric shock I described as an intense and forceful, buzzing electrical shock that ran from the crown of my head down to my tailbone. I noticed my ears were ringing more often, I kept looking for new reading glasses, and had a few new muscle jerks in my arms and legs.
Several weeks ago, I nearly passed out three times at home and once at yoga class within a 2 week period. At that yoga class I noticed when we were lying flat on our mats on the floor, I was leaning far to the left and could't use the top of my left leg muscles to push myself back to centered. It was an eerie feeling and I thought stroke ? And of ignored it and moved on (life is so busy).
The muscle jerking is uncomfortable and inconvient at this point and seems to happen when I am about to do something. If I am working and about to move my mouse, my arm may jerk uncontrollably.
Everything seemed to escalate to a point in June. My left leg seemed to be weaker and my left foot didnt want to pick up like usual. I actually tripped and fell flat on my stomach while running. Then, my left knee didnt want to lock. My lightheadedness went from occasionally to continuously and the ringing in my ears is conituous as well. I am asking my kids to look at me when they talk to me. I kept having to hold onto things around my home because of dizziness and lightheadedness when I turned too quickly, and had to keep side-stepping to keep from falling over while I was bumping into doorways.
For seveal months I felt as though I were standing on a buzzing wire that was so uncomfortable that I dropped between 15-20 lbs int he month of May without trying. And yes I know that's not healthy weight loss. Now, however, it is either going away or I'm getting used to it.
And finally, after a hot shower several weeks ago, I literally could not walk for about 30 mintues until my left leg would work again and my right leg cramps went away. This was the culmination of several months of all of these symptoms which have all but completely subsided at this point. Now I have that constant ear ringing, prickly tingling, episodes of lightheadedness and a light buzzing on my insides. Still no appetite and still down an easy 20 lbs from May.
My PCP ordered an MRI of the head which was negative. Now I am waiting to see the Neurologist but still don't have an appoinment scheduled as they are supposed to call me.
Thanks,
Marell
I don't know for sure, but I would think that altering a prescription is not okay legally, whether it's adding something or changing it.
Maybe you can write the doc a short note saying as long as you are having tests done, would he also send you test orders for X, Y and Z, because you've been reading and think it would be good just to push those possibilities off the table rather than drag things out, given how lousy you feel. He has seen you very recently, it sounds like, and he's trying to be cooperative, so I would think he might send you an additional test order slip without seeing you again.
I find that writing something like that TO the doc works better than calling and leaving a message with staff at the doc's office, because too many of the staff don't pay attention or give a rat's behind. There are exceptions, but it happens way too often for my taste, and they never get nailed for it.
If you're too wiped out to write it yourself, maybe you can dictate it to somebody and sign it, or type it and sign it. If you think the doc would need convincing, you could also remind him in the note how long you have been so ill and waiting till later to do more testing is just lost time and misery if this one comes back negative. The more rationale you can give, maybe the more likely he is to cooperate.
Maybe you can write the doc a short note saying as long as you are having tests done, would he also send you test orders for X, Y and Z, because you've been reading and think it would be good just to push those possibilities off the table rather than drag things out, given how lousy you feel. He has seen you very recently, it sounds like, and he's trying to be cooperative, so I would think he might send you an additional test order slip without seeing you again.
I find that writing something like that TO the doc works better than calling and leaving a message with staff at the doc's office, because too many of the staff don't pay attention or give a rat's behind. There are exceptions, but it happens way too often for my taste, and they never get nailed for it.
If you're too wiped out to write it yourself, maybe you can dictate it to somebody and sign it, or type it and sign it. If you think the doc would need convincing, you could also remind him in the note how long you have been so ill and waiting till later to do more testing is just lost time and misery if this one comes back negative. The more rationale you can give, maybe the more likely he is to cooperate.
No I wasn't thinking about changing my doctor's orders. Because he ordered a Lyme Test and marked it as Other. I was just going to add tests to it underneath. I know you are not supposed to change your doctor's order. I guess it would be bad to do that too. I will have to talk to my doctor then about getting him to add the specific test to the order. Hopefully, he will not have to see me again to do that. If he does I cannot afford it (I already owe the doctor almost $100 because I have an $800 deductible that has not been met). If he cannot change it without me being seen I will just have to wait a few months. It is just depressing to not be able to do anything and to not have money and being in pain and fatigue and misery on top of it. It ***** us having to get this done ourselves. Thanks for the input.
I didn't realize (shows how well my thinking process is working) that you, proudmommy, were talking about changing the actual test orders (even though reading back I see that's what you are considering). I was referring about your plan as it pertains to sending to the lab when you can afford it and then taking the results to an LLMD. No, don't change the doctor's actual order. If your insurance will cover the test as written, maybe go ahead and see what results you get and when your doctor explains the results, go from there as to your next steps. At least this doctor is considering Lyme and ordered a test. I am planning on talking to my pain management doctor yet look for a LLMD in the meantime. I'm so sorry for the miscommunication, my head and neck were (and are) killing me.
Hugs and more prayers to you,
Minnie
Hugs and more prayers to you,
Minnie
I don't know if you can get in trouble for falsifying a doctor's order, but it's possible. Think what happens to people who steal a doc's pad and write their own prescriptions. In any event, I'd think twice about doing it, bec. the doc will get the results and have a pretty good idea how it happened. Then you've lost your doc's faith in you, besides maybe committing insurance fraud?
Putting all that aside, Lyme testing and diagnosis is not a do-it-yourself thing. I would do the research on what tests you want done, and ask your doc to order those tests. If he does not, then a new doc is in order.
Sorry to be a downer, but those tests are going to be pretty expensive, and if your insurance company refuses to pay, you're stuck paying for tests that may or may not tell you anything useful and ticking your doc off on top of it.
I would see what the tests the doc orders have to say, and then take it the next step with him, tell him what you've been reading and ask that certain additional tests be ordered and why. He may or may not listen to you, but you need to be careful here, imho.
Putting all that aside, Lyme testing and diagnosis is not a do-it-yourself thing. I would do the research on what tests you want done, and ask your doc to order those tests. If he does not, then a new doc is in order.
Sorry to be a downer, but those tests are going to be pretty expensive, and if your insurance company refuses to pay, you're stuck paying for tests that may or may not tell you anything useful and ticking your doc off on top of it.
I would see what the tests the doc orders have to say, and then take it the next step with him, tell him what you've been reading and ask that certain additional tests be ordered and why. He may or may not listen to you, but you need to be careful here, imho.
Hi, I am new here and just starting my journey too. I don't really know what they should test for, but I do think your plan sounds like a good one and very similar to what I will have to do. We don't have any money either. It takes everything we have right now just to make it.
Keeping you in my thoughts and prayers,
Minnie
Keeping you in my thoughts and prayers,
Minnie
Well, I went to my primary care doctor and mentioned it to him. He went ahead and gave me an order to have a Lyme test done but the order is not specific. It just says that I have a diagnosis of Tick Bite. He asked them to just order a Lyme Disease test. There is room on there for me to add information though if I want to. They asked if I wanted them to do the test in their office and I said no. I told them I would have to check with my insurance to see if they cover it or not. I was thinking about adding on the order exactly what tests need to be done (I am not sure yet what I need done---I have heard they are not doing a culture for the bacteria) and when I have the money to pay for it out of pocket, sending them off to a lab (that knows exactly how to read the Lyme tests) whenever I have the money to pay out of pocket. And then when I have the results I will see about getting an appointment with an LLMD. I just do not have the money yet to do that.
What do you think???
What do you think???
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