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Old 11-25-2009, 11:30 PM   #1
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ellekay HB User
I'm not sure what to do anymore, and what this could be......

Hey all,

I'm so depressed. For so long i have been battling for a diagnoses and still nothing. It has been over a yr now.

A yr ago they suspected i have ms, did a head scan which was all clear. Then i had to see a chronic fatigue doctor who tells me that i have a sleep disorder and to get a sleep study done.

Still my symptoms continue, and here's what they are...

- Sharp and sudden pain in my fingers and feet.
- Numbness in my left leg, along with tightness, coldness and pain.
- Terribly sensitive to heat.
- Twitches and tingles all over my body
- Fatigue
- Depression
- Headaches
- Restless legs to a point where i cannot sleep
- Dry mouth
- Feeling that i'm dehydrated when i am not.

I'm sure there is more but i cannot think right now.

I need help cause i am at my wits end and very depressed.

I am 29 and female.

 
Old 11-26-2009, 07:05 AM   #2
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Re: I'm not sure what to do anymore, and what this could be......

Hi Ellekay.
Dont be depressed, youre not alone. You said a year ago, you had a head scan. The first thing you should know is that if you are being checked for MS, you should be checked with both a Brain and CSpine MRI, with and without contrast.
Im assuming the scan you had was a MRI, not a CT scan? CT scans wont show MS lesions..

Also, you should know that MRIs can actually change week to week. What doesnt show up on the first one, might actually show up on a second one- which is why using contrast is so important. It will light up any little tiny lesions which might be missed otherwise.

Also, just as many people have lesions in the spine as the brain.....so, if you didnt have your spine checked, its possible they didnt see anything that is actually there.

My suggestion to you is to find a new Neurologist, one who specializes in MS- and asked to have it ruled out. Im not suggesting that you have MS, in fact, your symtoms mimic quite a few things- lots of things present like MS does...but its not out of the question until you actually have it ruled out! I realize you have different health system there, and that youll have to go thru hoops to get the testing done...but from the sounds of things, you need answers. So, start with finding out who can order you the right tests and make sure its a person who is familiar with MS!

Just so you know, anxiety also creates similar symtoms to what you describe...and feeling the way you feel, and not knowing why- would certainly add to anxiety. So I really think its important that you talk to a doctor who takes your concerns seriously and tries to rule out any thing besides anxiety.

Dont fret. Even if you have MS, its manageable. And if you need us, we are here for you.
Nikki
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Old 11-26-2009, 08:37 AM   #3
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Re: I'm not sure what to do anymore, and what this could be......

Welcome back.

What you are feeling has often been felt by others. The lack of a diagnosis is indeed trying and stressful and only adds to your misery. I had a cousin with CFS who went doctor to doctor for 5 years. It can certainly be depressing.

While not knowing is not good, you already know your limitations and triggers. As Nikki said, finding a new neuro is a good idea. "Fresh eyes" can often see things which others may miss or dismiss.

As your season in shifting into summer, please take care to pamper yourself to avoid the heat. If you follow an adjusted lifestyle, you might be able to better cope with your struggle. You might seek the help of local MS Society folks as well as continue to visit this forum.

Though it might be difficult, try to remove the focus from your own life. Do you have a dog? Dogs have been found to help battle depression. You are in my prayers.
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Old 11-26-2009, 03:52 PM   #4
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Re: I'm not sure what to do anymore, and what this could be......

Thank you Nikki and Jayhawk. I now remember you all from the last time i was here. I tried to convince myself that all i was feeling was in my head, but its more real than ever.

Okay so i need a CT scan for my spine and head right? Yes i only got one MRI done a yr ago which showed nothing, so the doctors were like Okay you dont have ms. I'm so sick of the incompetence of doctors and their lack of empathy. I am seriously mad about it the whole system. It sucks!

I dont have a dog as i live in an apartment and they dont allow them. My husband ( Yes i got married ) really wants answers too as i am trying for a baby and its hard.

This heat is truly killing me! I was so hot the other night i was delusional.

Can you ladies please refresh my memory and tell me what it took each of you to get diagnosed?

Thank you for being so kind.

 
Old 11-26-2009, 04:24 PM   #5
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Re: I'm not sure what to do anymore, and what this could be......

If your problem is neurological, a CT Scan is a waste of time; you need the MRI. Your MRI was over a year ago; if you get one now, you might get different results. Study the McDonald Criteria and hold the doctor's accountable.

Sorry about no dog allowed!
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MS diagnosed since October 3, 1982
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Old 11-26-2009, 04:47 PM   #6
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Re: I'm not sure what to do anymore, and what this could be......

Quote:
Originally Posted by ellekay View Post
Hey all,

I'm so depressed. For so long i have been battling for a diagnoses and still nothing. It has been over a yr now.

A yr ago they suspected i have ms, did a head scan which was all clear. Then i had to see a chronic fatigue doctor who tells me that i have a sleep disorder and to get a sleep study done.

Still my symptoms continue, and here's what they are...

- Sharp and sudden pain in my fingers and feet.
- Numbness in my left leg, along with tightness, coldness and pain.
- Terribly sensitive to heat.
- Twitches and tingles all over my body
- Fatigue
- Depression
- Headaches
- Restless legs to a point where i cannot sleep
- Dry mouth
- Feeling that i'm dehydrated when i am not.

I'm sure there is more but i cannot think right now.

I need help cause i am at my wits end and very depressed.

I am 29 and female.

 
Old 11-26-2009, 04:55 PM   #7
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Re: I'm not sure what to do anymore, and what this could be......

hi
i'm so sorry ur going through this, i now how depressing this situation could be when u have no answer, however did u seek the advice of another md, clinic or facility, because if one can not help u always seek a second opinion. do no go looking 4 info on the net, a big no no, it will make u crazy
best of luck and may god bless u and guide u 2 better health

 
Old 11-26-2009, 04:58 PM   #8
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Re: I'm not sure what to do anymore, and what this could be......

Thank u for your kind words.

I am going to see a lady doctor who works in a women's health clinic. She is free and i see her with my ttc concerns. So i will talk to her about all of this and see what she says to me.

Does this get harder during pregnancy and/or after giving birth?

Is anyone here a mother?

 
Old 11-26-2009, 06:33 PM   #9
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Re: I'm not sure what to do anymore, and what this could be......

Yes, Ellekay. You read my post backwards....a CT is useless for MS. You need to have MRIs of the brain and spine...

And, no, Im not a mother biologically, ( I have 3 stepchildren) but having been here on the boards, and doing tons of research, I can tell you that during pregnancy, if it is MS- you will go into remission with no symtoms. Your homornes will protect you against problems. HOWEVER, the minute you give birth, you will might possibly relapse and it might possibly be bad. Many women with MS have given birth and NOT had this happen, but just as many have had relapses.....sometimes, the doctors will start you on IV SM (steroids, interveneously) right after birth to try to stop relapses- its not a bad idea to do this, unless you are planning on breast feeding.....in which case, you cant start MS meds or anything else right away. This isnt something you should be worried about...you can get pregnant and have a healthy baby (the most important thing) you just have to have a strong support system in place upon delivery, in case you are weaker and more tired then usual.....giving birth wont hurt you. Pregnancy wont hurt you. Its the after effects that need to be watched....however, one thing at a time. Start with finding some answers!
Best of the best to you.
Nikki
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Old 12-01-2009, 01:42 PM   #10
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Re: I'm not sure what to do anymore, and what this could be......

I have all the symptoms you have and more AND a clean MRI. I'm so frustrated. I'm also 10 weeks postpartum and had a FABULOUS pregnancy. I will share a website with you since you are trying to get pregnant.

< edited >

Last edited by hb-mod; 12-01-2009 at 02:01 PM. Reason: Please don't post disallowed websites as per Posting Policy. Thanks.

 
Old 12-03-2009, 11:00 AM   #11
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larry81 HB User
Re: I'm not sure what to do anymore, and what this could be......

how many days do u take the iv for and how long do the negative and how long do the positive effects of the steroids last?

 
Old 12-03-2009, 06:32 PM   #12
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Re: I'm not sure what to do anymore, and what this could be......

Larry, you might want to start a new thread so we dont monopolize this one....but do you have MS? IV Solumedrol is used for a host of things- and not all of them are MS related. IVSM reduces inflammation- so it can be used for many things..
if you are asking about a MS Relapse, its anywhere from 3-5 days...the side effects dont last more then 48 hours after the last infusion.......they usually start by the following day of the first infusion. You dont automatically start having side effects...takes about 12 hours to really get into your system.

I know people who go for IVSM infusions once a month, only once....and I know of Neurologists who put people on it for up to 7 days...so there is no "one" answer to your question, but I hope this helps...
Nikki
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Old 12-04-2009, 08:50 AM   #13
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Re: I'm not sure what to do anymore, and what this could be......

I sorry to hear how depressed you are. I can relate a little bit as I was told that my optic neritis could be ms, my head scan was normal and I'm waiting to see a neurologist. I have had weird things going wrong with me for a while and I'm scared too. I'm getting through this a day at a time, and I find it helps if at the end of each day I find one thing, and it can be anything that makes me smile. Today it was my cat stalking me trying to get hold of my ham sandwich. She was really in stealth mode and it was very entertaining. I know it sounds a bit silly, finding something to smile about helps me focus on the positive things in my life and it helps me realise that I'm doing all right and that things could be a lot worse.

 
Old 12-07-2009, 09:28 AM   #14
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Re: I'm not sure what to do anymore, and what this could be......

Quote:
Originally Posted by MSNik View Post
Larry, you might want to start a new thread so we dont monopolize this one....but do you have MS? IV Solumedrol is used for a host of things- and not all of them are MS related. IVSM reduces inflammation- so it can be used for many things..
if you are asking about a MS Relapse, its anywhere from 3-5 days...the side effects dont last more then 48 hours after the last infusion.......they usually start by the following day of the first infusion. You dont automatically start having side effects...takes about 12 hours to really get into your system.

I know people who go for IVSM infusions once a month, only once....and I know of Neurologists who put people on it for up to 7 days...so there is no "one" answer to your question, but I hope this helps...
Nikki
nikki,

thank you and sorry about asking this within the thread.

larry

 
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