Oh its OK..

I am not sure---Some say wrong size and shape---Others say thats BS--but they can not make that DX--note my frustration..

They said oh Pete its from you history of smoking and migraines----Umm Dr--I don't did not smoke----And Just as of last year after I already had these things on my head--started getting headaches---

So this dance makes me--made me feel like a total loser drug seeker===I said to the Dr----Bud---I am a cop---I can find or get any drug better than what you give me---Idiot!!..

What confuses me--And I never asked is---If they know a Diagnosis could take years----Why do THEY play this game with real people? Is it the Ins Co?
Or are some that dumb? Or that heartless?

Back to the lesions---They had to be in the proper side for some to think Probable I would think------This one Neuro said my next MRI would look the same as the 1st one----To bad I never went back to her------You know who told me there was a change===a big one----My PCP....

Thanks for the questions---It helps me tremendously to think someone cares--

(((Pete)))..
I'm so sorry you have to deal with all this. This may be a time your need to control can help you most. Don't let them blow off your pain, or label you as a drug seeker. They did that to my daughter, released her from the hospital, and she died 24 hrs later. Find a doctor who will listen..REALLY listen. It's not always easy, but it can be done, and there's got to be one out there for you. I know chronic pain can suck the life out of you, but don't give up! You're very important and special to all of us, and know that you'll be in our hearts and our prayers that you'll be guided to just the person you need to help.

Pete,

I am so sorry you are experiencing so much, physical and otherwise.

I hear you on the generic vs. brand on prescriptions. I recently changed some of my meds to brand, and although it is VERY costly to do so (as insurance does not pay from brand when there is generic - or at least I haven't figured out how to get them to do so), it has been VERY worth it for me. Definitely better response to brand than the generic! What are farce we are told to believe - and I used to be a supporter of generics. Maybe for some things (antibiotics?) they are okay, but with the newer-type drugs that are more specialized, maybe the generics are just too far off from the original.

On the MS/Not-MS issue....my biggest question to you is - if you are dx with MS - will you take any of the MS-meds (CRABs, Ty, etc)? If yes, and you whole-heartedly believe you have MS, then I would fight for the dx. I guess the dx also helps if you want to go out on disability - so it might be worth it then, too. If you have a PPO, start calling neurologists in your area (and further away, too!) and make some appointments. There is a doctor out there who can and will help you. If you have an HMO, then you might have a fight ahead of you, but it's your health, so fight for it.

Re: pain relief, have you tried the old standards for the headaches (topomax, neurontin, etc.)? Cymbalta has also been helpful for some for both depression and pain (especially nerve pain). Another thing I have found is that oxycodone in the form of percocet (which is oxy and acetaminophen) didn't help me as much as the plain form of oxycodone which doesn't have any acet. in it. Something about the acet., for me, that blocks the narcotic from being effective. Same thing with vicodin - I would use norco, as it has less acet. than vicodin. It wasn't until I had the HiCy treatment, when I wasn't allowed anything with acetaminophen, that I learned that oxycodone without the acetaminophen existed. Might be worth a try. Obviously, I am all for medicating symptoms - especially when there isn't much to help with the MS itself per se.

There is a doctor out there who can and will diagnose you. You know, I was diagnosed the very first time I went to neurologist - with my very first exacerbation/symptoms. Went for MRI and the lesions blasted right off the screen, so to speak. That, along with my physical presentation/exam, warranted a diagnosis. I guess some would say that doesn't happen....but it did with me. And of course, I knew virtually *nothing* about MS when I found out about it. I didn't know at the time that that usually doesn't happen (such quick dx).

Sorry this was so long....wanted you to know you were being heard by so many of us. Maybe you didn't want "help" in this form, but I am all about sharing any "knowledge" that has come my way.

Don't give up the good fight....you are worth it!! Reach out to us when you need it!!

~Keri

Hi Pete,
I don't know of anything to say that hasn't already been said in the very good advice you were given by the others. I'll just tell you I'm keeping you in my prayers and I just know that there IS an answer. Don't forget you're not alone and we'll listen anytime and are here for you. Hang in there!

The wheels as I said earlier fell off-----My Wife---Number 2---For my friend Nea ---Who I was a terrible friend to-----

Anyway---The wife was taking inventory of my Meds-----The dipstick lowered my Oxcy to 5 mgs---Which to some may be high---To me---6ft---Still a large man---5mg is like crushed ice---------So I missed my Christmas Eve--Christmas Day-------Any real time I may have seen with my kiddos---This was the 1st time I have seen them since Oct my Birthday---Because I was so miserable racked with total pain----Mr Dr---Did this without our Knowledge---My wife Balances everything around me------She works for the DA-----And we um need that job badly--------But she is my nurse--friend---Takes care of the chores--the animals---Washing me ETC---I know too many here can relate---So that snuck by----But why? Honest accident or malicious-------It marks when the wheels did come off------

For the little one here I wanna be strong----------But I can not deal with this BS----I wanna be positive----But I need to be comfy until we get some answers---Then---Maybe the answer is keep him comfy---Maybe it aint---

Love you folks----Sorry I can be a downer and a poor ungrateful friend-----Any I crossed---Please except my heartfelt sincere apology----I mean it----

You girls can teach this Deputy how to be strong....... Me----I can brag about the past----You can teach me to enjoy the now-----Hopefully I can fix the Doc situation before I am left with zero meds and too much pain and withdrawals-------And IE---I worked closely with the drug atticks withdrawing in the Infirmary-----I was always ready to do my job------But prayed with the men---And did what I could--------May the Universal Spirit keep that into account--I do not wanna be one of them---Lord NO!!

I sincerely believe that, when you are using narcotics for severe pain, you cannot become an addict, because the med is working on the pain. However, it's when you stay on the meds, full strength or more, after the pain has diminished, that you become that addict.

Although, not a narcotic, I was on Paxil for over 6 years, on the highest dose, when it seemed to stop working. I had heard such horror stories of the withdrawal symptoms and was afraid to get off.

My wise PCP didn't think I would have those symptoms, because I had used it properly and it had been properly prescribed for me, by my Neuro/Psych Doc. He replaced my PaxIl with a lower dose of Prozac, and he was right I had no withdrawal sx and the Prozac began to work for me.

I was abandoned by a doc--let to drift 2-3 days I can not remember-------And I use my stuff correctly or so I think------It was 2-3 days with NOTHING and days from HELL---Seconds seemed as years------My heart like a bunny------I was scared as a child----Filled with more pain than one could endure------

If I find myself in that situation again---which I may--Monday-----I will take matters into my hands----I will NOT live week to week---Never knowing what the next script will bring----The Anxiety is really whats taking me down---And it doctor created------They will not treat me like a person-----I spent almost 20 in the Department--And there too treated like a dog because I was injured in the line of Duty---Everything to save a buck------I really can not take this----I will nor lay this on you---Its been 2 years sick---2 years 4 months permanently injured----The most DEHUMINIZING time of my life--------Its just been too long----I am poor--until the retirement-settlement comes in------Animals have gotten better treatment than I----I am just really tired of it and tired of being the burden that I am

Pete, I wish I had some words of wisdom . . . and trust me, I'm not usually at a loss for 'something' to say. I am when it comes to pain though.

I have had that level of pain, but for no longer than 3 months at a time, at full intensity. I was beside myself, and completely desperate, so I empathize with you.

What about a pain management clinic? If you have already tried that, try another ... and another ... and another!! I know, easier said then done.

I am still not sure "what" specifically is causing your pain though? Is it spasticity, or neuropathic, or muscle, or ???

Cherie

Pete - I may be wrong, but aren't you the guy that had a good experience with an MS specialist in Boston after being referred there by another member? If so, can you go back to him or did that go sour? I am very worried about you and we need to figure out a way to get you some help.

Clearing up, Pete you have so not been a bad friend to me, I feel like I let you down too so we can wallow in our self pity together over being sucky friends! I hate to hear you this down though and I worry about you. Just keep re-reading my signature line at the bottom and make it your mantra, it works for me. Do you need me to arrange a shipment of magic brownies??? (that was a joke people, if I had them I'd eat them )