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Old 07-16-2008, 09:01 AM   #1
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ibelieve2 HB User
Possible MS

I am a 32 yr old female. I have been in a constant uncomfortable state since Feb. 08. I have been to the hospital 4 times, 4 different family medical drs, a rhemotoidologist, and neruologist. I continue to get worse with my symtoms on a weekly basis. I used to be an outgoing person, I did everything with my kids and husband. I am not one to ask for help and now that is what I am having to do. My symptoms started in Feb. with a weird sensation in my legs, nothing that I have ever felt before. Not one of these drs are able or willing to help it seems. They had tried everything and have ruled out so many things I cannot image there is a whole lot left. The neuro that I have been seeing said possible MS, I have had a positive physical exam, but a negitive brain MRI. I continue to have bladder issues, the sentation of wetness in my legs and back, pins and needles in my back, feet, hands, arms, and now my face, headaches, and blurry vision. I get very fatiqued easily, I cannot even walk through the entire grocery in one visit, (my pride gets to me), and I will not use the "wheely chairs" that they have. I feel like all of these doctors cannot find anything therefore there is no reason for a 32 yr old not to be able to get a couple groceries without getting tired. They did a spinal tap to test for MS, we were told, but never submitted it for those certain test according to the lab. After the spinal tap I could not get rid of my horrible headache, the doctor's office would not return my calls and finally I got ahold of them after 6 days. "That is a normal reaction." That was the response I got from them, nothing else. I had to go to the ER and have a blood patch done. They were very upset about the way I was being treated by the neuro dr and the actual way and location of where they did the spinal tap. I hope for anyones sake that they do not have the experience that I have had with this particular doctor. I am being sent ot Johns Hopkins in Baltimore, MD. I hope they are able to help me. I cannot continue to live in this condition, and the worst thing is they will give me nothing for the pain, and I continued to ask everytime that I went in to see them.
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Old 07-16-2008, 09:28 AM   #2
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Nenu HB User
Re: Possible MS

Welcome hun! You're 1 year older than me only, and I was dx'ed at 31 with MS.

Sounds a LOT like what I have been through. Numerous GPs, hospital visits, specialists. I felt ALONE. Like you say, it doesn't feel like anyone wants to help huh? Hang in there. You're on the right path, being proactive, and you WILL find someone to help.

You mention positive physical, negative brain MRI. Did you explore the possibility of MRI of more areas than only the brain? They did a spinal and never submitted the results??? WOW. I'd be LIVID. Why do a spinal, put you through that headache (yes, this is a reaction that some, including myself, experience) and not submit the results? Unbelievable.

I sincerely hope that you will find a competent neuro to assess your situation. Hang in there hun. I too did it med free for so long. It was awful. Look into natural remedies. You may find something to ease a bit of that pain.

You're not alone. Many (too many in my opinion) go through exactly what you are on the path to diagnosis. Be it MS, or be it another neurological condition.

Another question. Was your blood tested by your previous neuro? As part of the diagnosis procedure, extensive blood work is normally conducted. 11 vials in my case. Ugh. It was worse than the spinal, but it ruled out the rest.

Oh, and a big hello from the family! Hugs!
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RRMS Dx 03/08

 
Old 07-16-2008, 10:13 AM   #3
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Re: Possible MS

I' am so sorry that you are going through all of this! I cannot believe that they let you walk around with a spinal tap headache and not even give you results? I would be livid to say the least, as I' am sure you where and are! Did your Neurologist send you for the spinal? If so,I would get yourself a new one. Most with MS go through the "Doctor Chain" as you have...sad, but SO true. Keep your head up, and continue to demand answers. These boards are a great resource and comfort.

 
Old 07-16-2008, 10:38 AM   #4
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Re: Possible MS

I feel so alone. like no one understands what I am going through. I can no longer continue to do steps in my house so we are going to have to move. I have had so much blood work done, and have had so many things ruled out in cluding lymes, fibro, my heart, lupus, all types of athritis. All of my blood work comes back fine. My spinal tap results were fine. But according to Johns Hopkins they have to ask to specific test to be done on that fluid to determine MS, my doctors office did not ask for that. I can tell you that I will not go through another spinal tap again after this. I had to have that blood patch done to fix the headache from the spinal tap and that was horrible. I trust the drs at Johns Hopkins and hopefully they will be able to figure out what is wrong and soon.
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Old 07-16-2008, 11:02 AM   #5
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Nenu HB User
Re: Possible MS

Quote:
Originally Posted by ibelieve2 View Post
I feel so alone. like no one understands what I am going through. I can no longer continue to do steps in my house so we are going to have to move. I have had so much blood work done, and have had so many things ruled out in cluding lymes, fibro, my heart, lupus, all types of athritis. All of my blood work comes back fine. My spinal tap results were fine. But according to Johns Hopkins they have to ask to specific test to be done on that fluid to determine MS, my doctors office did not ask for that. I can tell you that I will not go through another spinal tap again after this. I had to have that blood patch done to fix the headache from the spinal tap and that was horrible. I trust the drs at Johns Hopkins and hopefully they will be able to figure out what is wrong and soon.
I had the dreaded headache as well, and ended up in the ER. Went into shock from the anxiety and panic I was experiencing. Would I do it again? Yes, because it was a piece of the puzzle that was necessary for my diagnosis and help.

What they should have checked for in your spinal fluid were what we call "O-Bands". I can't recall the lengthy medical name, but basically, if they find O-bands, that's a positive for MS, along with the other matching criteria (based on the McDonald criteria, which none of us here are capable of explaining as it requires a trained professional to decipher).

It's good too that they completed all that blood work and it came back ok

I hope this hospital can run a PROPER MRI. By that I mean, they need to be examining more than only the brain portion. MS lesions can appear in other locations, down into the spine (for example). It's entirely possible that you may not have lesions on the brain, but lesions elsewhere. Also important that the MRI is completed with contrast. The contrast is what will show and highlight activity and active lesions.
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RRMS Dx 03/08

 
Old 07-16-2008, 05:16 PM   #6
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Hang in there!

ibelieve, I hear very good things about the doctors at JH. Please know that you are very far from alone. There are (unfortunately) many people who follow a similar path in trying to get a dx, whether it be MS or something else. I truly hope that the visit finds you with some answers or at the very least, on a better path than the one you've been.

 
Old 07-16-2008, 06:21 PM   #7
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glamour girl HB User
Re: Possible MS

Ibelieve Welcome to our cyber family here. Please know you'll never feel alone on these boards. I'm sure its overwhelming at the moment. Do know we are always here for you. I know what you mean about the pride thing. I was living with my Mother IN LAW at the time i was dx. She helped me in the shower cause there were times i couldn't do it myself. God bless her. you'll have yr good and bad days. I'm sure once you find out whats going on healthwise. You will be in more control. Hope you get answers soon, along with a Doctor you can trust.
Best wishes to you hon... We're all here for ya

 
Old 07-22-2008, 11:08 PM   #8
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Re: Possible MS

I Believe2,

I read your posts tonight and decided to register just so I could say that my thoughts are with you. I am supposed to be some big tough guy but started crying when I read your post. I went through the same problems, but finally found the right MD. I am 55 years old and was just diagnosed with MS a little over a year ago, but the neuro specialist says because of the scarring and lesions I have probably had MS for 20 to 30 years. Hang in there and keep going to Doctors until you get an answer. Even bad news will make you feel better. We are all thinking and praying for you,

Have a great day

 
Old 07-23-2008, 04:37 AM   #9
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Bearygood HB UserBearygood HB User
Re: Possible MS

Hi, auctioneer, and welcome. I'm glad you were inspired to register. When you feel ready, I'd suggest that you start a new thread and introduce yourself.

I hope to hear more of your story and am glad you found the board.

 
Old 07-23-2008, 05:32 PM   #10
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Re: Possible MS

Hi Auctioneer, I second Bearygoods words...when you feel up to it, please start a new thread and let us know more about you. We are really glad to hear from you. we need more men! We have quite a few who are in your age group and younger, who can help you to get thru your intial diagnosis. Look for posts by Mitch, MSJayhawk and Mike35- they will provide you with some good reading! Welcome to our cyber world.
Nikki
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RRMS- dx 05

 
Old 07-24-2008, 01:01 AM   #11
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Re: Possible MS

Hello Ibelieve,

I just wanted to say Hi and let you know, (as alot of the others already have) that you are not alone in any way, shape or form.
My story in a nutshell-I was finally diagnosed last November, but went through a few years not knowing what was wrong with me. I knew something was wrong but docs kept telling me I was as healthy as an ox and it was just anxiety. After the anxiety it was ear infections (because I was having dizziness and off balance feeling) and then it was sinus infections and so on. I knew deep down it wasn't none of these things but noone would listen. Finally, my left side went numb and I thought I had a pinched nerve and so did the ER doc at first. Then FINALLY it was the ER doc that said "Let me do a CT scan just to make sure". Out of ALL the docs I had seen in prior years it was an ER doc that made the decision to do what I had begged so many to do in the past. After that CT scan and getting admitted into the hospital, it was a week and several tests later I had an answer! I never dreamed it would be something of this nature but the best news for me was...I wasn't going to die from this. (That's a story in itself)

But don't give up ibelieve and keep fighting for help and answers...You'll eventually get the answers you want and need. It's nice to meet you and I wish you the best of luck. There is ALOT of support here to help you through it all. I have met some very special people here in a very short time that has helped me through some tough times and I can never thank them enough.

Take care,
Mike

Last edited by Mike35; 07-24-2008 at 01:03 AM.

 
Old 07-24-2008, 01:11 AM   #12
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Re: Possible MS

Hey Auctioneer. Welcome to the boards! I'm kind of a newbie here myself. Long time lurker, short time poster. But like Nikki aka MSNik said, We need some more guys in here! Hope to hear more from ya!

Have a good one!
Mike

 
Old 07-24-2008, 01:28 AM   #13
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Re: Possible MS

Quote:
Originally Posted by Mike35 View Post
I knew something was wrong but docs kept telling me I was as healthy as an ox and it was just anxiety.
Oh goodness Mike. You really did hit the nail on the head for many of us that have been through the limbo before diagnosis. And KNOWING the symptoms doctors are 'diagnosing' us with are not right, and that something's knocking in our bodies saying "Nah uh!".

Your's was an ER doc. Mine was an ENT. I wonder if anyone's been referred for the battery of tests that lead to diagnosis by a dentist? I believe I've heard chiropractors and massage therapists in stories before.
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RRMS Dx 03/08

 
Old 07-24-2008, 06:18 AM   #14
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ibelieve2 HB User
Re: Possible MS

Auctioneer, I thank you for your support. I have found a new general family doctor, because the one I had has been telling me for months that it is depression. I saw the new doctor yesterday and she dx me with neuropathy, but feels from my exam that there is more to it and she thinks it could be MS. I am going to have the EMG test done on both legs soon, but my insurance still will not approve the MRI of the spine. So I am left with the EMG test. They are telling me that without the correct test done on the spinal tap and the MRI not being done that MS cannot be dx. So where do I go from here? It is a struggle everyday just to get out of bed. Going to the doctor yesterday was horrible. I do not leave my house and I know I will not pass my physical for work in a couple of weeks without some kind of help. So if anyone has any suggestions I am willing to listen to them all. I thank everyone for their support and prayers, God knows I need them. Hopefully I am on the right path. It is very nice and comforting to have you people to talk to, my husband sure tries but he really doesn't understand what I am going through. He takes off to help me and to take me to all of my appointments, he stays with me the entire time. I am now having trouble with my memory and so he goes with me so someone else can hear what the doctor says. (which is a big help) but when she told me yesterday that all of my symptoms point to MS, I just started to cry, I have been told this for so long but no actual dx. It is hard to hear it over and over again. But I can say I have asked the other doctors for something for the pain and not one of them would do anything for the pain until yesterday. So I will try this medicine and see how it will work for me. Everyone take care and talk to you soon.
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Old 07-24-2008, 10:54 AM   #15
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Mike35 HB User
Re: Possible MS

Hiya Nenu,

Wow, Can a dentist even know to refer something like that? That's interesting. Never even thought about that before. I can though understand the other 2 you mentioned. That would be an interesting story to hear!

Actually, Thats when my left side went numb. The day after I had one of my back teeth pulled in fact. Thats why I thought I had a pinched nerve! Thought I just turned and twisted the wrong way in the chair during the procedure. LOL Funny, but very true!

 
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