^^ good to see you timber
.. get that testosterone checked?
I'm working on it. Neither of the two neurologists I saw last week were willing to run the testosterone level (one of them had a warning that I shouldn't take one result as golden, and should have multiple draws run by multiple labs due to some variance in how they conduct the test. I am taking that advice to heart, and will ask.) Keep in mind that both neurologists spent extensive time with me, and were trying to help with other things that were also pressing. I was not in a good frame of mind when I saw the first one either, and I probably came off as hostile. (The quip of "Well, you will just be fatigued, and in pain!" Came off as rather cold, and uncaring.) The neurologists refused on the basis that they wouldn't treat the problem of low testosterone as it was outside of their field; both of them basically did the "take it up with your GP" mantra. I don't have as good of relationship with either of them as I would like as they as one of them is new, and the other is still fairly new. I just wanted the lab result in my hand when I saw my GP as time is a critical factor at the moment. I couldn't get my pain doctor to do much other than be belligerent for going off of my meds without consulting him first, but I didn't want to get locked into a 3-4 month taper. My GP balked as well (he wanted another lab back before he would consider it, and wanted to hear what the neurologist and sleep specialist had to say first -- I think I'm going to have to replace him), but I'm going to bring it up with him again -- and if he wont -- I'm going to see someone else to get the lab done. I need a referral, but I know I can get that from one of them. I've been wanting to run a couple things past an endocrinologist anyway, and I guarantee nearly any endo would run it. I have one in mind that I have a relationship with, but it takes a couple weeks to get into his office. The experimental treatment I was on replaced 5 hormones in my body that are critical to life, it also affected sex hormones, and some of them it kept in what would be an elevated state for years on end. Its quite possible I have a double whammy effect going from opioids, plus receptor homeostasis from the treatment. The last time I saw an endo I was not very much post treatment, and it likely affected the results to some degree (we didn't run a testosterone level, but we did extensive endocrine testing otherwise). I still feel like I could use another 6-9 months more or so on the treatment, and it would reduce my pain, but its not an easy sale given the mortality risk of the treatment I was on exceeds the mortality risk of the disease itself. I figure if it didn't kill me over 5 years its not going to. That being said, I did have some scary moments of my electrolytes being off in the beginning. Still perfectly happy to sign a waiver of liability if they will do what I want there -- its just that a waiver of liability isn't iron clad anymore from things that deviate from the standard practice of care. Standard of care is very high dose steroids, and nasty chemotherapy drugs that I do not want to take! So I'm thinking it would be a good idea to have the full panel run again now that I've been off of it for awhile, and hopefully I'll get an appointment long enough to go over the reasons why. I figure I better book it as a double length appointment or I wont get enough time with him to cover the why, and give him enough information to push it past the insurance.
I wish the doctor that originally put me on the treatment had not moved her practice to the VA. Since I'm not a veteran, and her contract forbids her having an outside practice -- she isn't able to do a lot for me. However, she did talk to me for two hours on the phone, and even to this day knows the details of my case extremely well. I was surprised at the length of time she took for a consult on the phone, especially one that wasn't compensated in any way. I can't say that she likes me, but I at least know she cares. It was pretty much an all out war with her when I was trying to get her to put me on that treatment; I was harsh, relentless, and I definitely did not get on her good side in the beginning. Muahaa. She considered the course of treatment insane at first, but it worked, and she has since used parts of it to help other patients that don't respond to the conventional treatments. She absolutely did not like: my confrontational attitude, putting me on the treatment, and the volumes of data I would bring in with the new studies coming out showing why it had a chance to work. I probably knew more about the disease, and the science involved than she did (that is another problem with specialists in that they already think they are experts on all aspects of their field, even when 200-300 studies are coming out per week that contradict the model of how that system is "supposed" to work according to the medical texts that they still use in medical school. I have one in front of me now that makes me cringe when I read how the endocrine system, and how the signaling for the innate immune system are supposed to work.) However, as much as we butted heads I know she learned a lot from it. Having a doctor who actually understood the science behind it versus dealing with anyone else -- some of them well meaning -- is just a cruel joke. I'm not 100% convinced that the treatment didn't break something somewhere in my body, but I would think I would have some improvement by now instead of worsening of fatigue. Seeing specialists in neurology, pulmonology, and rheumatology doesn't usually lead to good results - the science behind it is a 180 of conventional treatments and thinking on the disease process. What doctors don't understand they tend to dismiss out of hand; this would include any improvements that I have from the treatment. While the doctors in neurology, and rheumatology should care; they really do not have time to read the 80 pages of material it would take for them to even have a glimmer of hope of understanding the new discoveries that the treatment was based on. Some of these doctors get pretty touchy hearing new material they didn't discover themselves. They may have 3-5 more years of higher education behind them, but I can guarantee I know more about a great many aspects of these diseases than they do.
Thinking back on all of it ... The treatment had a lot of unintended side effects, required different dosing than they started with, and had really scary interactions with things that it did not have at lower doses. Some of the drug interactions were life threatening, and life taking for quite a few of the early people in the trial. Unfortunately, that gave the treatment a rather bad reputation! Most doctors wont touch it with a 100 foot pole, and very few have ever dealt with compassionate use paperwork. I was in the 2nd group of people let into the trial when it was limited to 100 people total, so I had the benefit of the suffering (and deaths of a few of) the first. If your back is against the wall long enough there are a lot of things which would otherwise be considered unreasonable that quickly become reasonable. I credit it with helping to give me back the ability to walk, speak clearly, and a whole lot of other things. I can't claim impartiality, even though I know about the deaths, and some bad outcomes. If I think back far enough, it did some wondrous things for me. The improvements in sarc are significant, but it pretty much eliminated SN-Rheumatoid Arthritis. I've had sustained "remission" for 3 years plus from RA. Before I took the treatment I couldn't even open up a jar of mustard without crying most days, I had given up guitar, and I cursed daily the person who invented buttons for shirts! Now I play guitar, I don't wake up stiff, the only clothing I hate is trying to unhook those bras with 6-8 tiny metal clasps on it, and the only joint pain I have doesn't wax and wane -- its more like what someone with osteoarthritis suffers; I figure that is just from existing damage to the joints. Nothing to sneeze at there. I still have some neurosarc symptoms, but they are far less than anything I dealt with in the past. However, a return of sarc might be the cause of my spine pain or maybe I just blotted it out with the pain meds before. I wanted to stay on the experimental treatment another year, but of course the docs blamed the experimental meds for the fatigue (the one who took it over is dismissive of any claims of improvement, and I find dealing with him rather frustrating); even if they never could come up with a mechanism for why it would cause it. I feel like the doctors yanked away my chance at getting completely free of the disease. When I went off of the experimental treatment, they blamed the opioids for the fatigue. I quit the opioids (time #2 for extended being off of them), and they switched to blaming the peripheral medicines -- so I quit again, and included those medicines in my quit. I figure if any of the meds were causing it that the fatigue would have at least moderately improved by now, you know? When I saw the neurologists I had been off of everything for over a week -- even muscle relaxers. I paid for that decision with an ER visit for pain (something that I don't recommend).
I hate to go through another round of CT's, and other scans. I'm surprised I don't glow in the dark from the total radiation exposure I've had since 2001. I know its coming though... 30 plus days off of morphine, valium, and a host of other medicines and I definitely have some appreciation that those medicines did block out some of the spine pain. I haven't been completely free of opioids for all of that period. Around day 32 I had a severe enough pain flare that that the ER doctors gave me 22mg of dilaudid injected to stop it (not all at once, over about 12 hours), toradol, muscle relaxers, tens, hot packs, and had a physiatrist come down and do some manipulation to try to get the flare to break. If you have ever been to an ER for severe pain, you know how defying of the odds that they did anything is. Even from that single day of use I got a dose of withdrawal for a couple days. Other than that flare I have been off of everything except NSAIDs, tylenol, and muscle relaxers. I am downing NSAIDs in such a way as to keep Bayer bankrolled, and using a dwindling amount of muscle relaxers far more often than I can sustain. So I'm little torn on that issue or what to do next. My current thinking is that it was the valium that was keeping the spine pain more or less in check due to working as a muscle relaxer (even though I didn't take it every day), and with its long half life it took a couple weeks to fully wear off. At present the pain is just shooting up my face from the base of my skull up, and causes a new thing I'm not happy about - sex headaches. That doesn't mean I can't find a muscle relaxer to keep it in check, but the boys & girls in the white coats need to play ball with that plan. I would still choose the pain over the fatigue, but realize I'm going to have to do something more -- just don't know what yet -- for pain. I'm still optimistic for a solution there! I can't always get everything on my terms, and my frustration hit a boiling point recently.
I have some stores of medicines that help a bit with the pain as far as the more powerful NSAIDS go & some muscle relaxers, but not enough to keep that solution in place for very long. I was hoping the doctors would be happy to work with me on solution on the pain side of the equation as I already know trying to manage it with high dose opioids is a dead end if I don't want to end up back on them 24/7. (The pass the buck thing was aggravating...Neuro's to the GP, GP to the pain specialist, pain specialist not listening, and trying to dump it on the GP... This is not the most enjoyable $1000 I have spent this year!) Just a reality of how opioids work that one cannot take them to cover 8-12 hours of a day 3x a week and not end up physically dependent when the doses needed are very high. Anything less than the very high doses needed for mostly nerve pain, and they just don't work. I don't want to be in a constant withdrawal cycle, nor do I want to be on 300+ mg of morphine per day -- which is what the pain doc wanted to do. I'm still aggravated about that appointment. It took all of my will not to punch my pain doc, and that isn't my normal (PAWS indeed!). I tried hard to get him to do anything else, and he still sent off prescriptions for my regular pain meds. I'm less worried about going back on using them than I am about my mental state (suicidally depressed), and seeing that as an rather permanent solution to my problems. For that reason I am extremely grateful that the neurologist I have seen longer pushed through an emergency appointment with the psychologist for me as I absolutely need it.
The rub is this: I don't think my pain doctor is entirely wrong. What was roughly weekly or less spine pain flares is now closer to 3 times a week. I can manage for awhile doing what I am doing, but its not a long term solution as it will eventually catch up to my liver, kidneys, heart, and is likely to cause ulcers. That is a large part of the resistance I am getting from the doctors at the moment. I know they mean well, but I don't truly feel like they are hearing me. I'm thinking in terms of "what is possible to do", and they are thinking in terms of what is "prudent to do longer term". I know the thinking they have, I understand relative risks, and I still think I'm better off to go in a different direction. That direction cannot include having to take high dose NSAIDs every single day. I never was able to tolerate the few things from the antidepressant category that could in theory help, and don't do hot on anticonvulsants. Depending on what my GP says, I may take up the neuro on the offer of lyrica in spite of reservations, but its something that may not play nice with muscle relaxers in my body. If Gabapentin + Soma = severe stupor I can only imagine that the effect would be even worse with Lyrica + Soma or Skelaxin. Throwing something like baclofen on top of would not be a good idea - its mechanism of action is too close to Lyrica (though it doesn't do very much on its own for me).
For the first time in awhile I'm not sure what I want to do or need to do on the pain side. I do know what I would like to try on the fatigue side, but I don't think any of the doctors will help me there until I get another sleep study done (15th of next month), and get through a battery of psychomotor testing that both neurologists independently ordered. I do have some genuine
fear that my symptoms are a return of neurosarcoidosis, but I'm doing my best to blot that out of my mind.
Sorry to ramble a bit, and "dump". I've just been keeping a lot of this in, and its eating at me tonight! Maybe someone else has been in a similar boat and has some ideas of what to do next. Ordinarily I am a lot more patient, but I have an additional stressor in that I'm trying to survive pharmacy school, and I can no longer afford for problems to fester if I'm going to actually complete what I started. The thought of a house size student loan debt hanging over my head, and not being able to get back in the program even if the problems are being driven by health issues is very much a heavy weight. The thought that I might not get a solution, or that by the time that I do it will cost everything in my life I currently hold dear is also a heavy weight. If I don't have at least something attempted in the works I'm going to talk to the dean, and see if I can postpone things for a period of time without losing my place in the program. I don't want my dreams to die due to this. I'm struggling to see beyond A-->B-->C-->D is going to end up at point Z if it continues much longer. Its not even chess type logic, its strictly checkers, and its a problem I'm powerless to solve without cooperation.
![:\](https://bluelight.org/xf/BL_Images/Orig_Emoji/wrygrin.gif "wry grin :\")
Hopefully May will be better but I'm not getting my hopes up.
as I can, esp those coming of methadone, bupe, and xanax) cause that shit is rough and weeks of that will where anyone down, if you have to go that long through it nonsense you learn to see the illusion clear as day and once you see it there is no going back.. Id gladly kick H twice instead of kicking methadone again, never going bacK.. I don't know if i ever intended to get off the xanax but I think the clonidine that i took for a couple days during the worst of the acute withdrawals made it kinda a snap to get off, either that or I had reached a state if total misery and there was nothing more my brain could do to make me feel any worse, I stayed on the ritalin to alleviate some of the depression insanity that the detox through at me and because there was no way i could make laying around.. no man i got more done in those five weeks of detox than I had in the six months previous.. I really hope you find something you can use from this.. after the five weeks of true hell, it got a sliver of a sliver better everyday until at around 4.5 months those damn opiate receptors raised their white flag and my head cleared another 70% or more and I had no idea I was even living in that fog.. fibro fog is so much like the frozen brain of withdraw that i'm almost certain they are the same thing.. the same day my head cleared was the same day that the frozen sunburn pins and needles goose bumps almost packed up their crazy patch that had been sailing around my body like a drunken sailor for almost five months.. I still get little flickers of that once and awhile, But all the fibromyalgia and all its symptoms as well as the sarcoidosis, as well as 99% of the acute withdrawal symptoms, might as well throw in the social anxiety, BP2, ARE GONE!!! I smoke cigarettes and drink caffeine, take the vitamin D, and the testosterone once every two weeks.. I feel absolutely great
. I hope this helps you and I hope you get better
