Welcome! Glad to have you here. I I hope it stays stable for a long time. I have Huntington’s Disease and (Lupus??) It depends on who you ask. My neurologist and PCP said yes, rheumatologist said no. So I get no treatment for it but to try and exercise as tolerated. I have great pain management doctors but I’d rather treat a cause than a symptom, ya know?
I also have aphasia because I had a stroke. It was somehow brought on by a clotting disorder where my body attacks my red blood cells instead of infection. I had Lyme Disease and was being treated but the antibiotics can’t really kill it so my body went into overdrive caused a clot. I’m also sort of a unicorn medically.
It’s a bitch and my pain doctors prescribe Gabapentin or Lyrica whidh seems to make it worse for me. I have to be watched for signs of Huntington’s Disease starting/progressing (which also causes aphsia) and it’s difficult for anyone to examine me because the meds cause issues, I had a stroke, and I have Huntington’s. Also there;s the Lupus Diagnosis. I was tested because of the stroke and my bloodwork and medical history said “yes”.My PCP said it was for sure a real thing. My neurologist referred me to a specialist just to confirm it but he was absolutely sure too. Therheumatologist treated me like I was a drug seeking scumbag wasting his time. He told me I needed to move around more so I’d stop being so sore and maybe get into therapy and he didn’t care what any of the other doctors said. It’s not Lupus. He removed it from my medical records, and also removed all my other diagnoses other than my stroke in their medical system and told me to be sure to make a follow up appointment at the front desk. I did not do that. My PCP was PISSED that he had done that and had to go back and add in all my issues. I have moved to a new city with new doctors but I haven’t dared to follow up on the Lupus diagnosis yet. I’ve discussed it with my new PCP and he said that when he got my electronic records they didn’t include the test results from that horrible doctor so I need to get those printed and go over them with him but I haven’t done it yet.
For an unasked for suggestion, have you been tracking symptoms? I’ve found that doctors have a higher chance of believing you when you have logs. Probably wouldn’t have done shit with that scumbag doctor, but sometimes what can sound minor is alarming when you can prove how long it’s been happening.
I did have a long log of symptoms compiled at the time I went to the specialist. He didn’t care. I have medical charts from many doctor visits showing my pain and fatigue and all that, but the more “minor” things and more recent changes I know I need to pull together better into a nice list and make sure my doctor can help me if i want him to be able to present it to a specialist. He told me to get the printed results and be aware that my labs already say “Lupus” but I still need to prove I have enough symptoms to treat it.
I think you need yo file a complaint against scumbag doctor. The more you write, the more I think he needs some evidence stacked against him for the day that someone can bring a malpractice suit against him. Filing a complaint against him doesn’t do anything for you, but it could help someone in the future.
I’m sorry you ran across the most douche-y of doctors
I should think about it. I’ve heard he’s like that with a lot of patients but they didn’t expect him to do it to me because I had so many notes from other doctors backing up what I said. He told me I never had Lyme disease, I just had a stroke and laid around for a year for apparently no reason. I asked why I was in pain for three months before the stroke, so much that I couldn’t get out of bed. He said he didn’t know, but it wasn’t Lyme disease. I told him my blood test for Lyme was positive and he said it was not, it was sort of borderline and he didn’t know why my PCP said it was, even though the test was done at the Mayo Clinic and they literally tell you what the numbers mean and it was QUITE positive. Unfortunately I didn’t know there was a tick and I didn’t get tested until 2 months after it started so it was too late but we still tried antibiotics anyway. If you don’t do it early it’s not enough to kill it, just weakens it. You still suffer for a solid year straight.
He lectured me about opioids not being appropriate for chronic pain, even though I never once mentioned painkillers. The only thing I said was that if there is a medical issue causing my symptoms I’d like to treat that, because I’d rather live without the daily pain and fatigue if possible and lower the other drugs I’m on to treat that. I don’t like the side effects. I’ve been sick for 6 years now and the only controlled drugs I have are Lyrica for nerve pain, and a strong muscle relaxer for my migraines. Still no opioids even though all my doctors have said they will give them to me if I want them, except for that one guy.
Report him please. He’s gonna cripple or kill someone.
Also what I use for fatigue is a supplement called coq10. It’s not magic, but it does give me a few more hours of energy before I can’t move and makes me feel almost normal waking up. I don’t know if it will work with your condition, since it mostly helps where your fatigue is caused by your body spending a lot of time healing itself, but maybe worth a shot?
That’s the truth, about specialists fighting for priority. From what I’ve seen, they’ve carved up the pie of various complex issues into discrete, siloed specializations, and have difficulty saying those three simple little words, “I don’t know.”
My partner’s Alzheimer’s is intertwined with anxiety and depression. For a long time, docs insisted “it cannot, not, NOT be Alzheimer’s,” because, you know, they weren’t neurologists. We probably lost valuable time over their stubbornness. Gee, you think someone who knows their brain is no longer firing on all cylinders won’t be depressed & anxious? /s
It’s unfortunately, but you have to be your own advocate. I do a lot of internet research for both me and my child. I spent 2 years listening to doctors tell me nothing was wrong with my child despite all the evidence I presented. It’s only by luck I got her into a trial where they had to test her and wouldn’t you know, she’s got ASD. For my MS I was very lucky. I was referred out to a neurologist who thought an MS specialist would find me fascinating. And he did. I have a very odd presentation of MS. Also for my demographic I’m a unicorn. I’m 100% healthy aside from the MS. Apparently, so many people in my demographic suffer from diabetes, etc that they basically can’t get trials going. I just know my doctor is waiting to ask me to join a trial lol. I wouldn’t say he’s hoping I fail my current meds so he can put me on something experimental, but he wouldn’t be sad.
I was a really good candidate for the Huntington’s trials they were doing near me, too. Presymptomatic with a symptomatic mom that I could bring along.They were practically drooling while talking to me about it, but unfortunately it was too far to travel once a week. The trial ended up being cancelled so it didn’t matter. It’s nice when the doctor’s are fascinated by your condition.
Yes, I’ve learned from the past 6 years of my life that “I’m sorry this is happening to you” means “This is potentially really bad but I don’t know the answer”. I got pretty sick of hearing that.
Yup, right on up there with “it is what it is.” I REALLY wish some of these confounded eggheads would just say “I don’t know.” However, it’s always a pleasure to watch their eyes bug out when I walk in using proper medical terminology. 😈 And then, since I’ve got my PhD (literature, which I know doesn’t go very far, but still), when they ask “is it Mrs. or Ms.,” I look 'em in the eye and say “It’s Dr., but you can call me 108.”
Welcome! Glad to have you here. I I hope it stays stable for a long time. I have Huntington’s Disease and (Lupus??) It depends on who you ask. My neurologist and PCP said yes, rheumatologist said no. So I get no treatment for it but to try and exercise as tolerated. I have great pain management doctors but I’d rather treat a cause than a symptom, ya know?
That sucks. Why does the rheumatologist get to overrule the neurologist? Isn’t Lupus in the neurologist’s domain?
Yes I’m hoping that everything stays stable. I have some aphasia, but no other symptoms. Hopefully a few word mix ups is all I ever have to deal with.
I also have aphasia because I had a stroke. It was somehow brought on by a clotting disorder where my body attacks my red blood cells instead of infection. I had Lyme Disease and was being treated but the antibiotics can’t really kill it so my body went into overdrive caused a clot. I’m also sort of a unicorn medically.
It’s a bitch and my pain doctors prescribe Gabapentin or Lyrica whidh seems to make it worse for me. I have to be watched for signs of Huntington’s Disease starting/progressing (which also causes aphsia) and it’s difficult for anyone to examine me because the meds cause issues, I had a stroke, and I have Huntington’s. Also there;s the Lupus Diagnosis. I was tested because of the stroke and my bloodwork and medical history said “yes”.My PCP said it was for sure a real thing. My neurologist referred me to a specialist just to confirm it but he was absolutely sure too. Therheumatologist treated me like I was a drug seeking scumbag wasting his time. He told me I needed to move around more so I’d stop being so sore and maybe get into therapy and he didn’t care what any of the other doctors said. It’s not Lupus. He removed it from my medical records, and also removed all my other diagnoses other than my stroke in their medical system and told me to be sure to make a follow up appointment at the front desk. I did not do that. My PCP was PISSED that he had done that and had to go back and add in all my issues. I have moved to a new city with new doctors but I haven’t dared to follow up on the Lupus diagnosis yet. I’ve discussed it with my new PCP and he said that when he got my electronic records they didn’t include the test results from that horrible doctor so I need to get those printed and go over them with him but I haven’t done it yet.
That all really sucks. I’m sorry.
For an unasked for suggestion, have you been tracking symptoms? I’ve found that doctors have a higher chance of believing you when you have logs. Probably wouldn’t have done shit with that scumbag doctor, but sometimes what can sound minor is alarming when you can prove how long it’s been happening.
I did have a long log of symptoms compiled at the time I went to the specialist. He didn’t care. I have medical charts from many doctor visits showing my pain and fatigue and all that, but the more “minor” things and more recent changes I know I need to pull together better into a nice list and make sure my doctor can help me if i want him to be able to present it to a specialist. He told me to get the printed results and be aware that my labs already say “Lupus” but I still need to prove I have enough symptoms to treat it.
I think you need yo file a complaint against scumbag doctor. The more you write, the more I think he needs some evidence stacked against him for the day that someone can bring a malpractice suit against him. Filing a complaint against him doesn’t do anything for you, but it could help someone in the future.
I’m sorry you ran across the most douche-y of doctors
I should think about it. I’ve heard he’s like that with a lot of patients but they didn’t expect him to do it to me because I had so many notes from other doctors backing up what I said. He told me I never had Lyme disease, I just had a stroke and laid around for a year for apparently no reason. I asked why I was in pain for three months before the stroke, so much that I couldn’t get out of bed. He said he didn’t know, but it wasn’t Lyme disease. I told him my blood test for Lyme was positive and he said it was not, it was sort of borderline and he didn’t know why my PCP said it was, even though the test was done at the Mayo Clinic and they literally tell you what the numbers mean and it was QUITE positive. Unfortunately I didn’t know there was a tick and I didn’t get tested until 2 months after it started so it was too late but we still tried antibiotics anyway. If you don’t do it early it’s not enough to kill it, just weakens it. You still suffer for a solid year straight.
He lectured me about opioids not being appropriate for chronic pain, even though I never once mentioned painkillers. The only thing I said was that if there is a medical issue causing my symptoms I’d like to treat that, because I’d rather live without the daily pain and fatigue if possible and lower the other drugs I’m on to treat that. I don’t like the side effects. I’ve been sick for 6 years now and the only controlled drugs I have are Lyrica for nerve pain, and a strong muscle relaxer for my migraines. Still no opioids even though all my doctors have said they will give them to me if I want them, except for that one guy.
Report him please. He’s gonna cripple or kill someone.
Also what I use for fatigue is a supplement called coq10. It’s not magic, but it does give me a few more hours of energy before I can’t move and makes me feel almost normal waking up. I don’t know if it will work with your condition, since it mostly helps where your fatigue is caused by your body spending a lot of time healing itself, but maybe worth a shot?
That’s the truth, about specialists fighting for priority. From what I’ve seen, they’ve carved up the pie of various complex issues into discrete, siloed specializations, and have difficulty saying those three simple little words, “I don’t know.”
My partner’s Alzheimer’s is intertwined with anxiety and depression. For a long time, docs insisted “it cannot, not, NOT be Alzheimer’s,” because, you know, they weren’t neurologists. We probably lost valuable time over their stubbornness. Gee, you think someone who knows their brain is no longer firing on all cylinders won’t be depressed & anxious? /s
It’s unfortunately, but you have to be your own advocate. I do a lot of internet research for both me and my child. I spent 2 years listening to doctors tell me nothing was wrong with my child despite all the evidence I presented. It’s only by luck I got her into a trial where they had to test her and wouldn’t you know, she’s got ASD. For my MS I was very lucky. I was referred out to a neurologist who thought an MS specialist would find me fascinating. And he did. I have a very odd presentation of MS. Also for my demographic I’m a unicorn. I’m 100% healthy aside from the MS. Apparently, so many people in my demographic suffer from diabetes, etc that they basically can’t get trials going. I just know my doctor is waiting to ask me to join a trial lol. I wouldn’t say he’s hoping I fail my current meds so he can put me on something experimental, but he wouldn’t be sad.
I was a really good candidate for the Huntington’s trials they were doing near me, too. Presymptomatic with a symptomatic mom that I could bring along.They were practically drooling while talking to me about it, but unfortunately it was too far to travel once a week. The trial ended up being cancelled so it didn’t matter. It’s nice when the doctor’s are fascinated by your condition.
Yes, I’ve learned from the past 6 years of my life that “I’m sorry this is happening to you” means “This is potentially really bad but I don’t know the answer”. I got pretty sick of hearing that.
Yup, right on up there with “it is what it is.” I REALLY wish some of these confounded eggheads would just say “I don’t know.” However, it’s always a pleasure to watch their eyes bug out when I walk in using proper medical terminology. 😈 And then, since I’ve got my PhD (literature, which I know doesn’t go very far, but still), when they ask “is it Mrs. or Ms.,” I look 'em in the eye and say “It’s Dr., but you can call me 108.”
Perfect answer.