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Old 05-23-2007, 10:01 AM   #1
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CJRT HB User
Can't get a diagnosis, need help

After 4 years of seeing multiple doctors and feeling worse than ever, I still can't get a diagnosis and don't know what to do.

I was told by my PCP I had either MS or Lupus, sent off to see a Neurologist, Rhuematologist, infectious disease specialist and pain management. With NO diagnostic tests other than blood work, they concluded I had fibromyalgia.

I have suffered on and off for 4 years and I have symptoms which don't match fibro. But I have a lot of symptoms that do. Until recently my legs were not affected as much which is why the neurologist said it wasn't MS.

But I have lost a lot of my fine motor skills in my hands and fingers. I have horrible muscle twitches in my arms and spacitiy in my arms and hands. I am on Klonopin for anxiety and once I started that, the tremors, twitches and spacitiy reduced greatly. I still have problems with the fine motor skills and have reached a point where it is extremely difficult to write long handed and somewhat difficult to type and I can't seem to hold anything in my hands without dropping it.

I suffer constant pain and fatigue and memory problems and I feel like when I am out in the heat, it sucks the life out of me.

But my doctors keep insisting that because my legs are not affected except for pain, that I do not have any form of MS. Do you have to have problems with your legs for it to be MS?

How do I make the doctors listen to me and could this be MS? Or do I just accept the fibromyalgia diagnosis? The 2 medications I've been on that were supposed to help the fibromyalgia did not help and none of my doctors wants me to start any sort of pain medication other than motrin, which helps as much as spitting on a forest fire.

I'm beginning to feel like my quality of life is becoming severely affected but I also feel frustrated because I can't get my doctor to do ANYTHING (I'm on an HMO, can't really change dr. right now without a lot of problems).
I'm 45 years old and feel 80. And I really don't know WHAT to do.

Thanks for any help
CJ

 
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Old 05-23-2007, 10:16 AM   #2
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duttin HB Userduttin HB User
Re: Can't get a diagnosis, need help

CJ,

Sorry to hear about your group of Drs.Your story is all to familiar as so many here has went through the same bull crap.

For starters MS effects everyone differently.There's multiple symptoms and they are not just confined to the legs.

Alot depends on where the lesions are located,I have them in the lumbar and near the brain stem so there for this has greatly effected my legs and rely on leg braces to walk.

I would get on the PHONE and call my PCP who thinks it may be lupus or MS and ask for an appointment and request an MRI of the brain and spine with/without contrast.He can order these test.Tell him you are getting no where with the specialist and that you are having multiple symptoms and not getting the proper care from these specialist,and that these symptoms are not giving you the quality of life that you deserve and don't let the PCP tell you NO.You have to be your own advocate and speak up for yourself.

If you are not happy with the Fibro Dx persue further testing you know your body best.

There are so many disorders that mimic MS and if the neuro you went to is not informed on MS,they will dismiss you and the symptoms and label it something elese.

Its quite possible to have fibro and something else.its not uncommon.

Welcome,there will be many that will come along later to offer support and advise also.

 
Old 05-23-2007, 11:25 AM   #3
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KTMorra HB User
Re: Can't get a diagnosis, need help

Hi CJ

Sorry your having to go through all this garbage. I think most of us here have been where you are at some point and its discouraging and maddening to say the least.

Don't let them dismiss you, it seems that they put the fibro diagnosis on a lot of people when they don't want to put the extra effort and time into digging a little deeper to find out exactly what is going on. Get an open line of communication with your GP and tell them your dissatisfied. I'm sure that when he/she listens to what your concerns are they will take it another step forward and get you the tests that are needed. Request a referral to a pain management MD, if your GP is hesitant to prescribe pain meds. Nuff is right, be your own advocate. The squeaky wheel gets the grease and your health is the most important thing.

One thing you mentioned in your posting that has me concerned is your problems writing. Question; when you do write do the letters start out big and end up being very small, or does your hand just get tired?
I know it sounds silly but this is a classic sign of another Neurological problem.

Best of luck, I hope you find this board as helpful as I have. They are a great bunch of people here.

Keep us posted
Kt

 
Old 05-23-2007, 02:47 PM   #4
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mnewhall HB User
Re: Can't get a diagnosis, need help

Hi CJ

I'm sorry you are going thru all of this. Your story sounds just like mine, except i've been going thru this since about 1993 (14 yrs). Dx'd with fibromyalgia and host of other things and now things are pointing to MS. I have no lesions on any of MRIs and my LP was normal, but my neurologist says that it still doesn't mean i DON'T have MS, in fact, he's 95% sure. He also said he doesn't like the dx of fibromyalgia. he said that it is a cop-out dx (he's not saying that our symptoms aren't real, but saying the doc isn't concerned enough to investigate further and find out the true source of the problems).

i agree with everyone else that you need to be your own advocate. do your research and take listings from the ms society of symptoms with you.

wishing you the best and hang in there.

blessings,
michelle
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michelle

 
Old 05-23-2007, 03:57 PM   #5
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peace40 HB User
Re: Can't get a diagnosis, need help

Hello CJRT from Australia. Just wanted to say your story moved me as I also went through many years of trying to explain that things were not right with my health (diagnosed with Chronic Fatigue along with some others along the way) Now dx with MS after abnormal MRI (10 lesions) and LP. However did have mris in past but normal at that stage. I agree with everyone else that you just have to keep at it until someone listens. Yet I am also aware this can be emotionally difficult. I wish you well on your journey and stay true to yourself in knowing your body and trusting when something just does'nt sound like it fits.

 
Old 05-23-2007, 05:15 PM   #6
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Re: Can't get a diagnosis, need help

Quote:
Originally Posted by mnewhall View Post
Hi CJ

I'm sorry you are going thru all of this. Your story sounds just like mine, except i've been going thru this since about 1993 (14 yrs). Dx'd with fibromyalgia and host of other things and now things are pointing to MS. I have no lesions on any of MRIs and my LP was normal, but my neurologist says that it still doesn't mean i DON'T have MS, in fact, he's 95% sure. He also said he doesn't like the dx of fibromyalgia. he said that it is a cop-out dx (he's not saying that our symptoms aren't real, but saying the doc isn't concerned enough to investigate further and find out the true source of the problems).

i agree with everyone else that you need to be your own advocate. do your research and take listings from the ms society of symptoms with you.

wishing you the best and hang in there.

blessings,
michelle

My husband is being tested for MS and I have Fibromyalgia. I don't agree with your doctor saying FM "is a cop-out dx"....I have been tested for everything (sleep study, allergies, MRIs, lab work including all ANA, Lyme etc,) and it is all normal except my Sed rate. I have been to the Onocolgist to make sure no cancer was invloved and nothing shows up.
I definetly have investigated because as a nurse I like to see the results on paper that tell me what I have. After 6 years of dealing with this Dx, I have now learned acceptance, that FM is real, I don't beleive it is a cop-out dx. I do know that a lot of FM patients go on to develop other autoimmune disorders but FM is real. Froggyfog

 
Old 05-24-2007, 07:51 AM   #7
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CJRT HB User
Re: Can't get a diagnosis, need help

Thanks all for the advice. I have been my own advocate in the past and pushed 2 years ago which is when I got the Fibro dx, but I feel now that it was possibly not right as they only did bloodwork, no MRI's or anything else. The neuro stroked the bottom of my foot and from that said: "It's not MS" and dismissed the tremors in my hands and arms as "familial tremor" and get used to it. Great doc. I wrote a letter to him and to his board that was not very nice. I was being tested at the Cleveland Clinic at the time as many of you know is one of the premiere clinics for MS so I was amazed that I didn't get a battery of testing done.

We have since moved so I'm starting out with all new docs and they absolutely refuse to believe anything any other doctor has done which irks the you know what out of me. And I feel so bad, that its hard to be an advocate when you just feel like poop on toast most of the time. It's almost like I don't have the energy anymore to push my doctors to do something.

In answer to the handwriting. I start off writing fine, but it gets harder for me to control the pen or pencil and my handwriting deteriorates into this illegible scrawl that even I can't read. It doesn't start big and get smaller. I would say it starts out normal and gets "looser" the letters more strung out.

As for Fibro being a cop out, I don't think that was being said that it is a BS Dx. But I think a lot of doctors (like mine) don't want to investigate further so fall back on it being Fibro instead of doing the MRI's and stuff that should have been done. I think MNEWHALL meant that it is a real disease, but that a lot of people get that Dx when doctors can't or won't do anything else so they just fall back on that one as its kind of a blanket excuse for a lot of mysterious symptoms that could be classifed as other diseases or as Fibro. Since a lot of the symptoms of Fibro and MS are similar and other dieseases are similar it becomes a Dx of exclusion and to get that, a lot has to be done and I think the dr. don't want to go to all the trouble of doing multiple tests to exclude other things so just say: Fibro! I have met doctors (my first neuro told me that he doesn't believe in Fibro. so why didn't he try to find out what exactly was causing all the problems I was having instead of dismissing me?) that do not believe Fibro exists and I actually believe that Fibro my actually be a combo of things that one day they will be able to Dx differently and treat differently.

I think the biggest thing that worries me is that I'm losing control of my hands and fingers and that scares me. I used to do a lot of intricate art and craft work and can no longer do it anymore. And that is NOT a symptom of Fibro. But I have a lot of the other Fibro symptoms which are also MS symptoms, but then I have some that don't fall under Fibro which has about 200 symptoms because apparantly it affects everyone differently.

I think that Fibro is finally getting more respect as a Dx and that more research is being done on it and hopefully more treatments available as right now, I get NO treatment for it. I tried Cymbalta and that stuff almost killed me. I am not lying, that was the worst thing I ever took in my life. And my doctors refuse to give me pain meds or send me to pain management so I suffer and take motrin and if its really bad, I add in a couple benedryl and try to sleep through it.

As strange as this sounds, I kinda wish I have MS as it sounds like there is a lot more treatment for that, than they have for fibromyalgia today. I really wish I didn't have anything, but of the two, I want the one that's treatable. I know there is no cure for either, but being told that there is nothing they an do fo the fibro is very depressing and I see myself going downhill slowly with no treatment or medication to stop the momentum and that doesn't help mentally at all.

 
Old 05-24-2007, 08:51 AM   #8
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Re: Can't get a diagnosis, need help

I'm am so sorry you are going through this mess. I understand what you mean by wishing you had another DX than FM. It is not treated properly. The doctors are starting to believe it is a real dx but do NOT know how to treat it right.

The pain/fatigue/brain fog effects my life everyday. My doctors RX cymbalta, zanaflex, and darvocet and I can honestly say that is a joke! The only one that does anything is the zanaflex. The darvocet just makes me sleepy so I can sleep in pain.

I hope you get the answers you need. I agree that a lot of doctors nowdays go for the easy dx....it is all about the money...the more patients they can get in and out of their office during the day the more $ they get. Very few want to spend the time to actually listen.

God Bless

Froggyfog

 
Old 05-24-2007, 09:05 AM   #9
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CJRT HB User
Re: Can't get a diagnosis, need help

Quote:
Originally Posted by froggyfog View Post
I'm am so sorry you are going through this mess. I understand what you mean by wishing you had another DX than FM. It is not treated properly. The doctors are starting to believe it is a real dx but do NOT know how to treat it right.

The pain/fatigue/brain fog effects my life everyday. My doctors RX cymbalta, zanaflex, and darvocet and I can honestly say that is a joke! The only one that does anything is the zanaflex. The darvocet just makes me sleepy so I can sleep in pain.

I hope you get the answers you need. I agree that a lot of doctors nowdays go for the easy dx....it is all about the money...the more patients they can get in and out of their office during the day the more $ they get. Very few want to spend the time to actually listen.

God Bless

Froggyfog
I wish you luck with the Cymbalta. It literally almost killed me. I had such a huge, severe reaction to it and I could NOT make my doctor understand, so they kept prescribing medications to take care of hte problems the cymbalta was causing. I could go into a huge diatribe against that drug and I've talked to others that had the same reactions to it. But I quit taking it against the advice of my doctors and I'm glad becuase I think I really would be dead today. It caused bleeding in my digestive tract, elevated my blood pressure, caused my heart to race out of control and had me so mentally unbalanced that I couldn't think straight or anything. It was one of the most horrible experiences of my life and I don't know why they continue to Rx it as I've talked with other people that had similar and worse symptoms on it than I did.

I realize it doesn't affect everyone the same way, but many of hte symptoms I had, my dr. was attributing to other things and once I got off the cymbalta, all those symptoms went away. I think it can be a very dangerous drug for some.

My doctor is too worried I might get addicted to darvocet, so they won't give me anything for the pain. And because I already take klonopin they won't give me anything else. It's very frustrating because nothing I've taken has helped except for the klonipin which helps the tremors and that is not helping as much as it used too.

 
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