FL was back at the hospital today.
He wasn't "due" to see a doctor so had to make a special request, and our luck being what it is, he got Dr Nuisance. Surprisingly, Dr N. wasn't his usual vague self and was quite helpful. He rang Ultrasound to check if the GP had made a referral, and he had, and FL is in the queue (it could take up to 3 months, but at least he is in the queue). He then examined FL's tum and listened to his description of the pain and said it was "probably nothing". He then took FL off to be weighed, so I sneaked a peek at FL's medical notes (tsk!). The Doctor from last time thought it was a constipation-linked pain which would pass once his bowels recovered from the Velcade.
I then asked Dr N. if FL could have something for the night-pains he gets in his legs and feet. We were awake most of last night with him jumping about the bed. At one point I rested my hand on his leg, just as a pain shot through it, and I swear I felt the spasm travel down the front of his thigh - weird! Dr N. knew immediately that it was the Neuropathy pain we meant (unlike the GP who sent FL away and told him pain was "just" a side effect to be put up with!) and explained he could prescribe either an anti-depressant like Amytriptyline or an anti-epileptic like Clorazepate, but that neither was guaranteed to help, both had to be taken long-term before they would begin to work, and both had side-effects. FL cut him off right there, saying he didn't want anything that caused side-effects! So it was decided that he would continue to manage with Paracetamol. I am not sure this was the best decision, but at least I know they are willing to prescribe either drug if the pain becomes too much to bear... and I can research a bit more about the side effects to help FL reach a more informed decision.
I regret to tell you that FL and I had an unspoken pact not to mention his Funny Turns. We already felt as if we were wasting the good doctor's time, and that really the GP ought to be dealing with the non-Myeloma stuff. As Dr N. pointed out, FL's Myeloma figures arevery low now, so he doesn't really need to see the Haematologist every time he attends for his Zometa infusion. And I felt a great wave of guilt about all the really sick-looking people stuck out in the Waiting Room while we shilly-shallied around talking about constipation.
So there you go. 20 rows of sock knitted, ready to turn the heel.
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6 comments:
It must be difficult to adjust to FL's improved figures. I have to admit there is a part of me that feels Mike should be seen by his consultant more often than he has been. (Although we were lucky yesterday!)
I hope things continue to improve.
I can tell you that the amiltryptaline Will Work after about 3 weeks, sometimes to the day, and it is worth it. The side effects can be rare.
{{Hugs}} to you both.
How did I not know that you live in the UK ??? I had a picture in my mind of your farm in the upper middle west of the U.S. with the snow etc. The last post and the name of the Mt. range tipped me off. No wonder you're always the first post in the morning! I pray that FL gets past all this. Last blog said he was doing better? Is that continuing or is this a set back?
The " Funny Turns" could be part of a one-time event or could be more. But the "wait-and-see" position is not a bad one.. good to hear his numbers are improving!
I know what you mean about time. I asked a very informative doctor at the Royal if he was okay for time and he said they were running so far behind it didn't matter but at the end of the day FL's constipation is as important as anything else. Even though thankfully his numbers are still 'normal' why not get everything as good as it can be.
I know he has only recently started taking the paracetemol, but what about Syndol. This is paracetemol, small amount of codine, caffine and a muscle relexant which may help with the spasms. Despite the caffine it is more relaxing than stimulating so is ideal to take before bed.
I am also on Amitryptyline for neuropathic pain, and it HAS helped. No side effects for me (and I think if you build up in 'stages', it really helps to minimise any side effects). It also helps with the restlessness at night, but doesn't leave you 'hung over' (again, gradual build up to an effective dose is the key). Maybe worth giving it a go so that FL feels a little more refreshed from sleep?
Warmest Wishes,
Marie (stashsiren)
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