Frustrated

[Wordsgood]

I know, I'm always frustrated. Sometimes even er, a bit um, negative...

I can't wait for March to be over! I tried earlier this month to do what I had been ordered to do by my new pain specialist. He is the head of the pain clinic at one of our local hospitals and told me that I had to attend a couple of programs or he would drop me as a patient.

Okay. First one was a half day, 3 times a week for 3 weeks "Pain Management" course. It was about, as I'm sure some can relate, the usual learning to think about pain in a different way and learning about alternative therapies.

The fact that it takes every single drop of energy I can muster up these days to actually make it to a single appointment apparently didn't factor into his calculations about what I'm currently physically able to handle. Nor did the fact that I've been unable to keep several due to pain, exhaustion and the resulting confusion that occurs. NO excuses I'm told.

Aside from having been there and done that so many times that I want to scream, I was willing to give it a go and I did try.

Well that didn't work out at all well and I only made it through 2 days. The 2nd course, after several calls and meltdowns where I explained the myriad of reasons the first course was completely inappropriate for me (or anyone with symptomatic MS), I finally get a call back from his office manager. The 2nd course, or group, is a once a week thing for people who suffer from "simple" migraines so perhaps wasn't really appropriate for me after all.

I'd been trying to point out repeatedly to these people that I had been in touch with my local MS Society and had to wait until the New Year before getting into anything there. But after it was made clear to me I had to do what the doctor said, I put off trying anything at the MS Society as it was too much for me to do both at once. Now I was told, like it was a brand new idea, that maybe a better fit would be working the MS Society. Really???!!!

I won't bore you any further with what the actual details of trying to reschedule my life involved, but suffice to say it was rather was more than a bit of a pain.

Still not clear if the pain doctor will see me again past my next appointment in a couple weeks, nor what the "plan" is for treatment. I had to fill out an enormous questionnaire that asked the most ridiculous questions, wait several months and go through several appointments with other people just to get in to see him for a 10 minute appointment during which I wasn't allowed to ask any questions, but I can't get a straight answer out of anyone! (Wow, how's that for a run-on sentence? )

Every office keeps directing me back to the other offices. Still no talk of putting me on a DMD and aside from taking away the pain meds that keep me walking, no alternative treatments (that I can afford) have been offered.

Ssssooo tired of...well, everything!

Okay, whine is done now. Just needed a bit of a vent. Sorry.

[22cyclist]

So, wait, you are not diagnosed?

Lisa
Moderation Team

[Wordsgood]

Oh yes, I'm definitely diagnosed. Have been since last October, but the neuro wanted to see if some of my pain meds could be reduced and replaced with an effective alternative before putting me on a DMD. She seems to fully believe the pain levels are driving me bats and flat out said that had she been in my shoes with this much pain and no doctor believing her, she would have done the same thing.

But because my GP (the one I can't get rid of) is from the school of thought that MS does NOT cause pain, he's blatantly ignoring her orders that he was not to reduce or take them away UNLESS & UNTIL an effective, affordable treatment could be found. The pain specialist refuses to call my GP on this, as he feels the narcotics aren't helping enough to bother with them, and he won't talk to my neuro...who is in the same hodpital!

I can't get past the neuro's staff to help clear this up for me either. No, the current level of narcotics I'm on are not producing miracles, but most of the time keep me from curling up in a ball sobbing for hours on end.

You see the GP I had before this one (who closed down his practice to re-up in the military) spent 13 years sending me to a ton of specialists, none of whom thought to order an MRI and one guy just talked to me and said I had Fibromyalgia. Even my first bout of ON resulting in 70% lossof vision in both eyes, where he promptly checked me into the hospital for two weeks assuming they would do a bunch of tests, didn't work. The only specialists I saw while there were doctors trying to convince me I had an eating disorder because I was too thin!

A few weeks later and still blind, I saw an opthamologist who did no real testing and put the blindness down to a rare but not unknown side effect of the migraine I woke up with the morning I fould myself mostly blind. Didn't even know until it happened again in early 2012 that it was ON.

So after we had exhausted all attempts to find help, and he tried me on every non-narcotic medication for pain and they all either failed or made me violently ill, he started to give me narcotics in the lowest dose possible. Of course over time I become immune so they were gradually upped so I could stay as mobile and comfortable as possible.

But this GP started taking me off them as soon as I landed in his office and flatly refused to go through my history or send me to anyone who might be able to figure out the cause. He just assumed my old GP was a pill pusher and that there really wasn't much wrong with me.

So now they finally know for sure that it's MS and that I've had it since my teens. And I have a neuro who believes me about the pain, the declining cognitive abilities, reduced motor skills and a ton of other symptoms.

Problem is, her instructions are not being followed, I can't get past her staff, and the pain specialist and GP are each doing their own thing!

So Yeah. I'm frustrated. Beyond frustrated!!

[gloobylube]

Hi I am sorry you have an ununderstanding GP. i am with Kaiser, and everyone has been great.
I am awaiting a prob dx in May, as I present with every single symptoms of MS, including the vison, in which I have an appt next friday for glasses to see if they will help.
The narcs I am on are not cutting it, put a email to PM doc, to see if he could add Diluded to the mix, or something similiar, as it helps with pain.
I am so angry at you GP for thinking MS has no pain, where has he been living, under a rock?? My thoughts and prayers go out to you. hang in there

[CaroleL]

Wordsgood,

Last year I was on so many narcotics I was totally buzzed. On top of that, I was taking OTC meds every 4 hours. I was still crying from the pain. No amount of narcotics helped.

Went I went in ER, the attending prescribed Lyrica for me. It's for neurological pain. From the first week on, my pain levels have gone down 80%.

Maybe you could ask your doctor if you could try something similar.

[Wordsgood]

Thanks folks. Mostly I'd just like to get straight answers and not have one office pawning me off on the other all time.

As for Lyirca, tried that already a few time and it makes me very sick. Or rather the active ingredient does, which is put into several meds of different names but are basically the same thing. Thanks for the thought though!

[JerryD]

I just replied to you in another thread. I hear you, clearly.
I forgot to mention one other feeling that I feel too much, marginalized. Good luck

[sulphur kennel]

Lyrica?!? Yuck!!!

My first neuro put me on Lyrica that made me sick. When I told him that he told me to keep taking it and that my body needed to get used to it. He also told me that MS had no pain. My DH promptly grabbed me by the arm and took me home before I could show him what my pain felt like.

I finally got to a neurologist that believed me about the pain and got me on Gabapentin. It was like a wonder drug for me (with less side affects). I have had to increase the dosage over the years and am now taking 3000 mg a day. I'm not sure how much more we can increase my dosage, but it hasn't had to be increased for several years.

I hope you get some help soon. By the way, a cattle prod produces the same pain sensations that I had and they make hand held one's too.

[Wordsgood]

Alas, Sulpgur Kennel, I've tried Gabapentin too. And with the same result - zero pain relief and terrible gastro side effects.

But thanks for thinking of me. I appreciate ALL suggestion from other members, so if anyone has them please feel free to post them!

It's only the unsolicited suggestions from acquaintances, strangers, family and friends who have zero knowledge of MS, that annoy me. You know the kind. We've all heard them. Someone has a "miracle" diet, vitamin regimin, or a cretain type of "special" yoga that's going to us in no time flat!

And it must be true, because a friend of their friend's cousin USED to have MS, but they took this 21st century snake oil cure and now they're all better. That or they read about it on the internet and as we all know, it MUST be true cause no-one ever lies on the internet. Right?

I've only been diagnosed for six months but people have been trying to pawn off snake oils cures onto me for decades as soon as they hear or notice I'm sick.