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Old 05-16-2008, 01:44 PM   #1
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My first visit to the Rheumy, what a doosie!!!

Okay, so I just got home from my torture. Oh, wait, I mean from the Rheumatologist. Wowwsers!! Did she hurt me?? Holy Cow!

So, anyway, I've been diagnosed with Fibro. Shocking. (LOL) She's starting me on yet another anitdepressant, Cymbalta. (Anti-depressant number one million and one....but, I'll try it.) She says that she has to try me on that first or my insurance won't cover the more expensive "Fibro" specific drugs. (Does that sound right or not?)

Then, she went on to say that my pain seems "a bit out of proportion for someone with "just" fibro." I had shared with her, for some unknown reason (she had this way of making you talk...) that I had several abuse from my step father and moved out of my home when I was 16. So, then she adds that she thinks that my pain is "so great" because I'm suffering from PTSD. Okay, well, yes, I was DX with PTSD years ago, but, I've been to therapy (for 17 years) and I've been on EVERY anti-anxiety and depressant in the world. No relief. She did say that she felt that my pain was real, but, that it was exaggerated by the "PTSD". (That kinda ticked me off, but, whatever.)

I had no reflexes in my deep tendons. Well, that's a lie, I guess that she got one in my left elbow, after she tired for an enternity! She had no reason to give me for that, other than to ask me if I had a brain or spinal injury. (??)

She also thinks that I have Sjogren's and started all the blood work for that. We'll wait and see, I guess.

WOW- it just gets better and better. So, while I'm typing this my GP calls me back, so I can tell him everything that the Rhuemy said and when I told him about the PTSD, he was all like "Well, yeah and you can't rule out MDP, either." WHAT?? Are you kidding me? This man has known me for nearly a decade. I've been in intense therapy for YEARS, don't you think that a Phsychologist would have notice if I was a Multiple Personality? I mean, really? Give me a break. Holy Cow. Then he said "Well, I'm not saying that I really think that that's what it is, I'm just saying that it's possible.". Well, it's also possible that I could sprout wings and fly myself to Alaska, but, it's probably NOT going to happen today!!!! I should say that my GP's wife is a counselor, in his same office space and he always seems very willing to "hand her card out" if you know what I mean. Wow......now I'm doubly mad.

I mean, I went in to the doctor's office with a 102.3 fever. I didn't realize that PTSD or MPD could cause fevers or brain lesions or dead reflexes or extreme pain or dysphagia or, or, or, or........the list goes on.

I can't even see straight right now. I'm goig to lie down for a while. This is just all too much right now.

HONESTLY.

Bec

 
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Old 05-16-2008, 02:21 PM   #2
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Re: My first visit to the Rheumy, what a doosie!!!

Sorry you had to go thru all of that. Your doc probably prescribed cymbalta because insurance companies make them prescribe cheaper drugs first. Lyrica is the only FDA approved drug for fibro, and since it's new, it's probably expensive.

There's a new name for Multiple Personality Disorder, but I can't remember what it is--typical. It's a controversial diagnosis. In the one case I saw, the woman had a second personality that was her "protector". She had suffered from sexual abuse as a child, and when she got angry, the "protector" personality would come out. In any case, I would take that diagnosis with a grain of salt.

Your situation sounds overwhelming. Get some rest! Neither PTSD or MPD will cause lesions or the other stuff, you're right about that. I'll be thinking of you!
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April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 05-16-2008, 03:48 PM   #3
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Re: My first visit to the Rheumy, what a doosie!!!

Yeah, it's called Disassociative Identity Disorder now. I just went through the entire questionnaire, the one that the therapists use, to classify different phsychological disorders and let me just tell you..........I only had ONE thing that I answered "yes" to out of the entire area for DID. And that was that I had suffered sexual abuse as a child. Now, I'm quite sure that not every single person on the planet that's suffered abuse is mental. I'm sorry. I just don't buy it.

I mean, I was a Psych major for goodness sake. I didn't graduate, but, I had been in enough to now about MPD and Bi-polar for sure. I don't meet ANY of the criteria at all.

I'm just so tired of people falling back on the whole, "Oh, gee, it's all in your head.", instead of just being honest enough to say that, maybe it's them. Maybe, THEY'RE inadequate in some way. Maybe they haven't tried hard enough. Maybe they're too narrow minded to look outside of their little bubble of expertise (I use the word loosely today....)? I realize that doctors have areas of expertise for a reason. No one man can know everything. I know that there are guidelines to disorders both medically and mentally for a reason. I find it interesting that it's so easy for them to lump people into a "mental disease", without meeting all the criteria, yet I can't get a firm DX of MS, because why.........Oh, yeah.........I DON'T MEET ALL THE CRITERIA!!?? Okay, we can't have it both ways. Either I'm not sick at all or I'm all goobered up.

I'm just frustrated. I mean, I have so many tests that show so many things being 'abnormal', I can't even tell you. I have a folder full of them, yet when I take them to a doctor so that they don't have to reinvent the wheel they don't even look at them. WHAT'S THE POINT?? I keep being looked at like I'm crazy because I just get tired and I leave the whole medical world alone for months or even a year at a time. Then, things start to flare up again and I can't ignor it anymore and I start all over. THEN, they (the docs) ask me, well, why didn't you follow up on AB or C and I'm like, seriously? I'm here, NOW, isn't that enough? They seem to be using that as some "proof" that I'm crazy, not the I"m just exhausted and discouraged.

Does anyone else here have a story or is living right now, the whole fact that you can't spend you whole life at different doctors offices, looking for the "cause" of you problems? I mean, at some point, you have to just stop and take a breath, regroup and start again late. Does that make us nuts? Does that make us any less ill?

Oh, I just want to scream. They did this CRAP to my Mother, too, before she got diagnosed. They kept on telling her that she was nuts, too. Not so nuts now, is she??

Okay, I'm done for the moment. I'm so sorry. I'm having a tantrum. I apologize. This too will pass.

Bec

 
Old 05-16-2008, 04:20 PM   #4
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duncan1 HB User
Re: My first visit to the Rheumy, what a doosie!!!

Quote:
Originally Posted by Beccapooh View Post
d.

I mean, I went in to the doctor's office with a 102.3 fever. I didn't realize that PTSD or MPD could cause fevers or brain lesions or dead reflexes or extreme pain or dysphagia or, or, or, or........the list goes on.



Bec
Have you had a long term course of antibiotics?

 
Old 05-16-2008, 04:45 PM   #5
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Re: My first visit to the Rheumy, what a doosie!!!

Hope you feel better soon Bec- doesnt sound like a good day at all. As April said, Cymbalta is the current "Trendy' drug to prescribe for depression, but the kicker of it is that it also contains something which works on nerve pain, which is why its prescribed for Fibro patients as well. I also had it prescribed to me, for nerve pain, in my hand- it did absolutely nothing for pain and after 3 weeks I stopped it- it was making me a zombie, and depression isnt one of my problems! It is one of the cheaper drugs on the market, and many docs are trying it- it really cant hurt you to try....

As for all the diagnosis's that are being thrown at you...I cant begin to comment on the reasoning, but I will tell you to be careful- if you get labeled with too many more, your going to start having issues with insurance and getting things covered...And, as this is a MS board, you might want to check on some of the other boards for more info on these disorders...people there might have more info for you to relate to.

You wrote:
I'm just so tired of people falling back on the whole, "Oh, gee, it's all in your head.", instead of just being honest enough to say that, maybe it's them. Maybe, THEY'RE inadequate in some way. Maybe they haven't tried hard enough. Maybe they're too narrow minded to look outside of their little bubble of expertise (I use the word loosely today....)? I realize that doctors have areas of expertise for a reason. No one man can know everything. I know that there are guidelines to disorders both medically and mentally for a reason. I find it interesting that it's so easy for them to lump people into a "mental disease", without meeting all the criteria, yet I can't get a firm DX of MS, because why.........Oh, yeah.........I DON'T MEET ALL THE CRITERIA!!?? Okay, we can't have it both ways. Either I'm not sick at all or I'm all goobered up.

NO, your not crazy looking for a diagnosis- and yes, you should continue to be an advocate for your own health....but, please be careful as you are going to start being labeled with something that you probably dont want on your records...let the Rheumy give it a good shot at getting your pain and issues under control, because after this doctor, your going to have to go back to Neuro's who are going to read your chart and either have to start over or they arent going to want to repeat the tests which were already done.

hang tight, get some sleep...
Nikki
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Old 05-16-2008, 05:56 PM   #6
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Re: My first visit to the Rheumy, what a doosie!!!

I totally agree.

And, to be clear, no one has diagnosed me with any mental illness. She (the Rheumy) just suggested that pain can become increased by PTSD. Since, I had already been DX with this years ago, I had to disclose that, didn't I? My GP isn't DX as Disassociative. He's said to me, "Nothing would surprise me with you, anymore!" He's been amazed that I just keep going, even with everything that's happened to me and that's going on now. He really is a good guy. Honestly. I just get my hackles up evertime anyone suggests that's it mental, when we all know, so clearly, that it's not.

As far as depression goes, I'm not depressed anymore. I WAS depressed due to my severe B-12 deficiency. This IS, however, a VERY common symptom of Perncious Anemia. Amazing that once I started my B-12 shots, the depression almost instantly went away. I've never gotten relief from an anti-depressant. Funny thing is, THAT'S part of the reason why my doctor would even think of DID. Folks with DID don't respond well to antidepressant treatment, because they're not clinically depressed. It's almost comical really. The whole irony of the situation. The way that everything comes full cirlce.

So, truly the only things that I'm "officially" DX with are Putnam-Dana syndrome, which is secondary to the Pernicious Anemia, Diverticulitis, MVP w/ regurgitation and now Fibromyalgia. In the scheme of things, not the bad all and all, right?

I might try to go to a Fibro board. I'm already a member of the PA Society and I chat there about the PA problems. The diverticulitis isn't really that big of a deal, honestly. I can deal with that. Same with the MVP. No biggy. It's quite common.

As far as starting over with a new Neuro, I'm just going to put all of my faith in him/them and see what they say. Let the chips fall where they may. If, after they've looked over everything, they tell me, without a doubt that there's no way that I have MS or ever will (to the best of their knowledge, I'm not like early MS or something) then I'll walk away and never look back. I just want to give it a fair chance, and I don't feel like that's happened yet. My other Neuro's were convinced that they were either trying to prove or disprove that I had Myasthenia Gravis. Nothing more, nothing less. They never even mentioned MS. I HAD TO ASK ABOUT IT MYSELF. I was told that it was "unlikely" because I only had 8 lesions. That was the end of the discussion. I took them at that and moved on. For nearly 18 months, I didn't even give it a second thought. Then, I was on my B-12 for long enough that my Neurological symptoms should have all but disappeared and they hadn't. I went to see my doctor and he mentioned that at this point, we should consider the idea that maybe it is MS and we had the new MRI done last week. It came back the same as the one last year. 8 lesions. I'll be getting my spinal one done on Monday and we'll see what that says. Honestly, if it shows nothing, I might just cancel my appointment with the new Neuro. I'm not made of money and in the end, he'll probably just tell me the same thing anyway. I mean, I'm slow, but, I'm not stupid!! I would just love to know what in the world has (is) causing my lesions and the smudgy, dirty looking white matter and all my neurological problems. I mean, there aren't THAT many things that it could be, as far as I know.

Anyway, I'm feeling more calm now. Sorry, I should learn not to post when I'm so confused and upset. It's like calling and ex-boyfriend after three glasses of wine. NOT A GOOD IDEA!

Bec

Last edited by Beccapooh; 05-16-2008 at 05:58 PM.

 
Old 05-16-2008, 06:35 PM   #7
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Re: My first visit to the Rheumy, what a doosie!!!

Bec,

I just wanted to add that I thankfully, do not think that I have MS, I think it has been ruled out at this point.

I do have rheumatology issues, (possible lupus) and have been diagnosed with undifferentiated connective tissue disease. I suffer severe fatique, and joint pain, memory problems as well, and some nerve pain and weakness thrown in there also. I have been on treatment for a year now with plaquenil, on and off steroids, NSAIDS, and I just started taking cymbalta also. For me, it has been 2 months roughly, and I am starting to see a difference in the nerve pain and numbness in my hand. I actually forgot to take my medicine today until about noon, and my pain was back to intolerable, when I have almost been completely pain free for the last 2 weeks or so. I was put on it for situational depression ( I also have a very sick 4 year old with crohns disease that is pushing me over the edge) with the hopes of it also helping with my pain issues. I also lost about 6 pounds when I started it. Give it a chance, it might help.

I still don't know exactly what I have either, but I do feel tons better since I started the plaquenil. My neuro is also thinking of working me up for myasthenia gravis, and I do have many of those symptoms. All I know is that I have something auto-immune in nature. My ANA is always 1:1280 (1:40 normal) and my daughter also now has an auto-immune disease (crohns) It is very mysterious at times. I am just glad I feel as good as I do now. This whole MS thing for me started with a numb painful hand and a neuro visit for a possible pinched nerve in my neck. It turned out that I had a pretty abnormal neuro exam, and hence the MRI's of the brain and neck. I do have a herniated cervicle disc, but they don't think that is causing my hand numbnesses. oh well, I figure someday, all my weird symptoms will add up to something! LOL Hang in there, I know how frustrating it can be.

Kelley

 
Old 05-16-2008, 06:48 PM   #8
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Re: My first visit to the Rheumy, what a doosie!!!

Bec, your comment about the wine and exboyfriends CRACKED ME UP. Thanks for the laugh and smile!

Your attitude is not unusual kiddo...you are going thru the ringer. But, in listening to your posts, you do make alot of sense. I can see where all youve been thru and all the different things you have been dealt, would make anyone question EVERYTHING. And, you have every right to do so.

Keep doing what you are doing...but do yourself a favor, and try not to get caught up in all this. Sometimes, you actually have to take a step back, even if it means NOT SEEING ANY DOCS for a few weeks or months, to regroup and figure out what direction YOU think you need to go. Sometimes, too much info is overwhelming and can actually stress you out more, making your symtoms worse and your head feel like its going to explode....Ive been there.

Whatever, you do make me smile- your posts are quite amusing sometimes...

Hang tough. Sleep Bec. You really need some down time...
hugs
Nikki
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RRMS- dx 05

 
Old 05-16-2008, 06:55 PM   #9
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Re: My first visit to the Rheumy, what a doosie!!!

Quote:
Originally Posted by Kel123 View Post
Bec,

I just wanted to add that I thankfully, do not think that I have MS, I think it has been ruled out at this point.

I do have rheumatology issues, (possible lupus) and have been diagnosed with undifferentiated connective tissue disease. I suffer severe fatique, and joint pain, memory problems as well, and some nerve pain and weakness thrown in there also. I have been on treatment for a year now with plaquenil, on and off steroids, NSAIDS, and I just started taking cymbalta also. For me, it has been 2 months roughly, and I am starting to see a difference in the nerve pain and numbness in my hand. I actually forgot to take my medicine today until about noon, and my pain was back to intolerable, when I have almost been completely pain free for the last 2 weeks or so. I was put on it for situational depression ( I also have a very sick 4 year old with crohns disease that is pushing me over the edge) with the hopes of it also helping with my pain issues. I also lost about 6 pounds when I started it. Give it a chance, it might help.

I still don't know exactly what I have either, but I do feel tons better since I started the plaquenil. My neuro is also thinking of working me up for myasthenia gravis, and I do have many of those symptoms. All I know is that I have something auto-immune in nature. My ANA is always 1:1280 (1:40 normal) and my daughter also now has an auto-immune disease (crohns) It is very mysterious at times. I am just glad I feel as good as I do now. This whole MS thing for me started with a numb painful hand and a neuro visit for a possible pinched nerve in my neck. It turned out that I had a pretty abnormal neuro exam, and hence the MRI's of the brain and neck. I do have a herniated cervicle disc, but they don't think that is causing my hand numbnesses. oh well, I figure someday, all my weird symptoms will add up to something! LOL Hang in there, I know how frustrating it can be.

Kelley
Good news to hear that MS is not on the radar as much now Kelley. I hope everything works out for you and you get the answers
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