More medical woes
November 9, 2015 5:02 PM Subscribe
The short version: I have an undiagnosed disorder that is getting worse. I am now at the point where I cannot walk and am in excruciating pain most of the time. I don't know where to turn next.
Several years ago I developed a rash on both ankles that was associated with pain in the same area. I went to various people to get it looked at and the answer was always the same: "Huh. Dunno." Then the pain in my left leg started spreading from the ankle to the calf to the inner thigh. Sometimes the pain was so violent and sudden that I would collapse. I developed issues with proprioception--I thought my feet were doing things that they were not doing. I developed numbness and referred sensation--if you touch one area of my foot I will feel the sensation elsewhere on my body. I had a nerve conduction study done that found significant nerve damage somewhere in my back--I was too traumatized by being shocked with needles in my muscles to pay much attention to which nerves were affected. I now have the sensation of hot nails being driven into my toes most of the time. There is a hot knife that just lives in my left thigh. And this morning I woke up being unable to bend my left knee under my own power--I must use my hands to lift my leg into the car, for example. If I attempt to bend it myself the pain is so intense that I burst into tears, and I am a person with an extremely high pain tolerance.
I went to a neurologist last December. We were not a good fit--he had CP so severe I couldn't understand anything he said and he yelled at me because he was impatient with me. He used my body to hold himself up while he examined me, which made me extremely uncomfortable. And he wanted me to repeat ALL of my tests, including the nerve conduction study, at HIS hospital, which is something my insurance was not going to cover. He looked at my scans and said that other than "something" in both of my optic nerves, everything looked fine. He suggested the "rash" might be psoriatic arthritis but would be an extremely unusual presentation. He sent me to an eye doctor who found calcium deposits in my optic nerves, which would explain some of the visual disturbances I have. It does not explain my nerve pain. I do not have diabetes and I am not an alcoholic (though I have considered starting to drink to deal with the pain). I am allergic to the common nerve pain prescriptions--neurontin sent me to the emergency room with a swollen throat, and I had similar but less severe issues with other nerve pain medications. Opiates do not work.
No one knows what this is. I've been to brain guy, foot guy, back guy, general guy. I am miserable and desperate. I feel like this is an emergency but nothing an ER could handle. I don't know HOW to find out WHAT THIS IS. What would YOU do?
Several years ago I developed a rash on both ankles that was associated with pain in the same area. I went to various people to get it looked at and the answer was always the same: "Huh. Dunno." Then the pain in my left leg started spreading from the ankle to the calf to the inner thigh. Sometimes the pain was so violent and sudden that I would collapse. I developed issues with proprioception--I thought my feet were doing things that they were not doing. I developed numbness and referred sensation--if you touch one area of my foot I will feel the sensation elsewhere on my body. I had a nerve conduction study done that found significant nerve damage somewhere in my back--I was too traumatized by being shocked with needles in my muscles to pay much attention to which nerves were affected. I now have the sensation of hot nails being driven into my toes most of the time. There is a hot knife that just lives in my left thigh. And this morning I woke up being unable to bend my left knee under my own power--I must use my hands to lift my leg into the car, for example. If I attempt to bend it myself the pain is so intense that I burst into tears, and I am a person with an extremely high pain tolerance.
I went to a neurologist last December. We were not a good fit--he had CP so severe I couldn't understand anything he said and he yelled at me because he was impatient with me. He used my body to hold himself up while he examined me, which made me extremely uncomfortable. And he wanted me to repeat ALL of my tests, including the nerve conduction study, at HIS hospital, which is something my insurance was not going to cover. He looked at my scans and said that other than "something" in both of my optic nerves, everything looked fine. He suggested the "rash" might be psoriatic arthritis but would be an extremely unusual presentation. He sent me to an eye doctor who found calcium deposits in my optic nerves, which would explain some of the visual disturbances I have. It does not explain my nerve pain. I do not have diabetes and I am not an alcoholic (though I have considered starting to drink to deal with the pain). I am allergic to the common nerve pain prescriptions--neurontin sent me to the emergency room with a swollen throat, and I had similar but less severe issues with other nerve pain medications. Opiates do not work.
No one knows what this is. I've been to brain guy, foot guy, back guy, general guy. I am miserable and desperate. I feel like this is an emergency but nothing an ER could handle. I don't know HOW to find out WHAT THIS IS. What would YOU do?
I'd see a new neurologist. Did you have an MRI then?
I'd also see a rheumatologist or other autoimmune specialist.
Then, I'd also consider something like parathyroid. Unlike thyroid tests, it's not routinely run or looked at. Here's some info. If you have calcium deposits, do you also have high calcium in your blood? Parathyroid can cause bone pain.
Lastly, (or really firstly) do you have a GP you trust? They may be out of ideas but may be able to get you into specialists sooner.
Can you get your results online or have them sent to you? I had issues with people saying my tests were "normal" when they were close to an abnormal range or still indicated a problem (and hello surgery after insisting something was wrong.) I really appreciated being able to actually see all my results.
Also, get yourself to a therapist. See if someone has experience with chronic illness and maybe they could do phone or skype sessions. A therapist really helped me cope and organize what all to do while trying to figure out what the hell has been wrong with me for over two years.
And not leastly, if you need someone to talk to, message me. I truly understand having everything come back normal. It's infuriating to have people ignore your pain. A good key is to objectively tell them everything you cannot do anymore because of your pain.
posted by Crystalinne at 5:13 PM on November 9, 2015 [8 favorites]
I'd also see a rheumatologist or other autoimmune specialist.
Then, I'd also consider something like parathyroid. Unlike thyroid tests, it's not routinely run or looked at. Here's some info. If you have calcium deposits, do you also have high calcium in your blood? Parathyroid can cause bone pain.
Lastly, (or really firstly) do you have a GP you trust? They may be out of ideas but may be able to get you into specialists sooner.
Can you get your results online or have them sent to you? I had issues with people saying my tests were "normal" when they were close to an abnormal range or still indicated a problem (and hello surgery after insisting something was wrong.) I really appreciated being able to actually see all my results.
Also, get yourself to a therapist. See if someone has experience with chronic illness and maybe they could do phone or skype sessions. A therapist really helped me cope and organize what all to do while trying to figure out what the hell has been wrong with me for over two years.
And not leastly, if you need someone to talk to, message me. I truly understand having everything come back normal. It's infuriating to have people ignore your pain. A good key is to objectively tell them everything you cannot do anymore because of your pain.
posted by Crystalinne at 5:13 PM on November 9, 2015 [8 favorites]
New neurologist, yesterday. Preferably the day before yesterday.
Tell them that you are losing your ability to walk - but that your back doesn't hurt (to differentiate yourself from garden variety back pain).
posted by Dashy at 5:47 PM on November 9, 2015 [1 favorite]
Tell them that you are losing your ability to walk - but that your back doesn't hurt (to differentiate yourself from garden variety back pain).
posted by Dashy at 5:47 PM on November 9, 2015 [1 favorite]
An older relative of mine had similar symptoms that were diagnosed as peripheral neuropathy. You should see a new neurologist as was stated above.
posted by procrastination at 5:51 PM on November 9, 2015
posted by procrastination at 5:51 PM on November 9, 2015
I'd highly recommend a rheumatologist too. In my experience they are good at considering a range of symptoms when making a diagnosis - since autoimmune diseases can cause all manner of issues - and will refer you to other specialists as required.
I hope you find some help, this sounds so distressing.
posted by kitten magic at 6:00 PM on November 9, 2015
I hope you find some help, this sounds so distressing.
posted by kitten magic at 6:00 PM on November 9, 2015
I have a family member who got a post surgical infection from knee surgery, it travelled to his now ex, foot. He described pain similar to yours and he said staff will actually change tissue so there is confusion as to what is going on. He was glad to lose the foot, because it was the only relief from excruciating pain in eight years.
Because you started with a rash I would say see an infection control specialist, soon. Maybe the MRI doesn't see general infection, and maybe it isn't a classic but something not usually associated with your symptoms. Your pain might be allergic reaction to whatever it is.
posted by Oyéah at 6:20 PM on November 9, 2015 [1 favorite]
Because you started with a rash I would say see an infection control specialist, soon. Maybe the MRI doesn't see general infection, and maybe it isn't a classic but something not usually associated with your symptoms. Your pain might be allergic reaction to whatever it is.
posted by Oyéah at 6:20 PM on November 9, 2015 [1 favorite]
Your symptoms -- here and in previous questions -- seem a lot like a friend's of the family who ended up (after a long struggle) being diagnosed with a chronic form of Guillain Barré syndrome called chronic inflammatory demyelinating polyneuropathy, which can, in rare cases, start out with a rash.
It is an autoimmune disease, which would make it appropriate to seek out a rheumatologist, but I would want someone experienced in treating Guillain Barré.
posted by jamjam at 7:39 PM on November 9, 2015 [3 favorites]
It is an autoimmune disease, which would make it appropriate to seek out a rheumatologist, but I would want someone experienced in treating Guillain Barré.
posted by jamjam at 7:39 PM on November 9, 2015 [3 favorites]
I forgot this other thing. It might be latex allergy. If there was stretchy latex in the top of some socks, and you have never been allergic to latex before, and say some garment was loaded with it at the ankles. That allergy can do all kinds of things.
posted by Oyéah at 10:53 PM on November 9, 2015
posted by Oyéah at 10:53 PM on November 9, 2015
I don't have great advice other than seeing a different neurologist and a rheumatologist. But I'm so sorry to hear about your health. I personally know how frustrating it can be to have chronic illness that has doctors stumped. Hang in there--odds are they will get this figured out!
posted by persona au gratin at 12:14 AM on November 10, 2015
posted by persona au gratin at 12:14 AM on November 10, 2015
Nthing the idea of seeing a good rheumatologist. This sounds like an autoimmune disorder, perhaps MS.
posted by mysterious_stranger at 12:56 AM on November 10, 2015
posted by mysterious_stranger at 12:56 AM on November 10, 2015
I don't suggest this as an alternative to the recommendations above, but possibly as something you might wish to try along the way as you're waiting to get more info and better diagnosis and treatment. I wonder if changing your diet in some way might mitigate one or more of your symptoms?
Particularly as people are suggesting MS-related conditions, I wonder if it might be worth looking into. Some people with MS apparently report that changing their diet (I think often to paleo, or low FODMAP) has helped slow progress. IANA dietician or nutritional therapist, but if you're up for throwing more appointments at the problem then maybe you could try seeing one.
posted by greenish at 3:36 AM on November 10, 2015
Particularly as people are suggesting MS-related conditions, I wonder if it might be worth looking into. Some people with MS apparently report that changing their diet (I think often to paleo, or low FODMAP) has helped slow progress. IANA dietician or nutritional therapist, but if you're up for throwing more appointments at the problem then maybe you could try seeing one.
posted by greenish at 3:36 AM on November 10, 2015
Have your docs discussed complex regional pain syndrome, (formerly known as reflex sympathetic dystrophy)? It can present with rash, swelling, skin painful to the touch, and nerve damage as well as excruciating pain; most often in a limb; and can be a follow-on from even a trivial injury. The sooner the treatment the better the result, so it's worth asking for a consult asap.
Intro to CRPS via NHS UK and National [USA] Institute of Neurological Disorders and Stroke
. An advocacy/support group of people with CRPS outlines the path of initial pain, diagnosis, and treatment.
posted by Jesse the K at 7:53 AM on November 10, 2015
Intro to CRPS via NHS UK and National [USA] Institute of Neurological Disorders and Stroke
. An advocacy/support group of people with CRPS outlines the path of initial pain, diagnosis, and treatment.
posted by Jesse the K at 7:53 AM on November 10, 2015
I encourage you to, in roughly this order:
1. Have this exact discussion with your primary care provider, or even a new general practitioner if you feel your current doctor isn't communicating effectively with you about your options. Print out the question you asked here, maybe even the responses, to get the conversation going. Although a diagnosis has not been made, you can ask your doctor to help you classify your signs and symptoms (i.e. neurological, immunological, etc.) to help you identify diagnostic gaps. This'll also give you useful high-level summary information to share when you interact with other caregivers.
2. If your tests have been carried out at a hospital, look up the hospitalist. Let them know that the communication between their staff physicians and you has been confusing, to say the least, and you're left not knowing what the next steps to care are other than visiting the emergency room. They should be able to guide you through your next steps, and maybe help you get information out of the test records you already have.
3. Get copies of your medical records. Centralize them.
4. Check your insurance coverage for pain management therapy / physical therapy. If you're covered, there's good motivation for you to seek any relief you can find without a definitive diagnosis.
posted by late afternoon dreaming hotel at 10:45 AM on November 10, 2015
1. Have this exact discussion with your primary care provider, or even a new general practitioner if you feel your current doctor isn't communicating effectively with you about your options. Print out the question you asked here, maybe even the responses, to get the conversation going. Although a diagnosis has not been made, you can ask your doctor to help you classify your signs and symptoms (i.e. neurological, immunological, etc.) to help you identify diagnostic gaps. This'll also give you useful high-level summary information to share when you interact with other caregivers.
2. If your tests have been carried out at a hospital, look up the hospitalist. Let them know that the communication between their staff physicians and you has been confusing, to say the least, and you're left not knowing what the next steps to care are other than visiting the emergency room. They should be able to guide you through your next steps, and maybe help you get information out of the test records you already have.
3. Get copies of your medical records. Centralize them.
4. Check your insurance coverage for pain management therapy / physical therapy. If you're covered, there's good motivation for you to seek any relief you can find without a definitive diagnosis.
posted by late afternoon dreaming hotel at 10:45 AM on November 10, 2015
This thread is closed to new comments.
posted by tuesdayschild at 5:11 PM on November 9, 2015 [2 favorites]