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Old 10-28-2009, 08:05 PM   #1
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please help me understand some things

I have posted here before so I will try to make it short. I had my first MRI yesterday, brain and brain stem, with and w/o contrast. The tech told me that the MRI may not give evidence that I have MS, I told him that is why I was having it. Is this true? Can they diganose MS , if the LB or spine MRI shows nothing? Can the doctor diagnose MS purely on symptoms?

I have had these weird flare up , episodes for over 10 years , I am 42 now. I was told it was fibromyalgia and just delt with it. But my friends fibro pain were never like mine. My horrible flare ups would be on one side of body only, starting down in my foot and going up my right side into my eye socket. It wasnt like feeling the flue symptoms it was like a whole right side body migraine. I have had true migraines and I know how they feel.. a shot of demereol and phenergan is all that would work.

So a few years ago more sypmtoms started and these are what made me look into possible misdiagnoises of Fibromyalgia.

Only right side pain.. it spreads, travels.
Horrible muscle pain , spasm you can see , as well as feel
Horrible eyeball, socket pain, seems like my eyes is droopy even
My speech is slured at times,
thoughts and words are hard to put together, I have to think hard and then words dont come out normal

The scariest is this one....I feel I can not swallow, I feel I cant even make my own spit go down, I feel I am going to choak and any given week I do choak on my drink or food , I never used to do that.

I have so much numbness......I burned my arm really bad, because I didnt pull it away from hot lid fast enought.

I have a total loss of feeling of my skin on my left ankle and top of left foot, it has been like that for 2 months, no feeling at all, and not getting better.

I have had numbness in my vaginal area,,, my bladder has leaked much more lately .

This is just a bit of why I think I have MS.

This doctor I am seeing is the first one to really listen to me and agrees it should like MS.

Again.. will they diagnose me on symptoms if the test come back showing no lesions?

Thanks so much for your time , Dede

 
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Old 10-28-2009, 08:54 PM   #2
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Re: please help me understand some things

MS can be diagnosed based on many criteria. While the MRI is excellent in revealing lesions, it is not the only test. The MRI is only "one cog" in the MS diagnosis process. Long ago, before the MRI, patients were being diagnosed with MS. If your MS is in the early stages, lesions might not be clearly seen. A MS specialist (neuro) will be the best doctor to review the MRI data.

As for choking on the food, I have found that there are certain foods which I can not eat anymore. I drink plenty of ICE cold water. This has helped me control the choking problems.

As to the areas of numbness, I have numbness which is long term. It is difficult to know whether the numbness will go away. My neuro told me that if my numbness lingers for 3 years, it will be there for good. Due to my numbness, I have to be very careful in the kitchen. I, too, have experienced burns.

My right eye can be quite painful. I have found that acupressure has helped. I have also found that my right eye is quite sensitive to light. I started wearing polarized sunglasses. After 6 years, the eye pain has greatly disappeared as long as I use the sunglasses. You might try to see if you can determine triggers that cause your pain.

When I am mentally or emotionally exhausted, my speech becomes stuttering and slurred. I zero out my thoughts (some alone time- reading, TV, music) and rest my brain.

I have found that sleeping with my upper body on an incline has also helped with my night-time choking.

Please stay strong. I will keep you in my prayers.
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Old 10-29-2009, 01:03 PM   #3
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Re: please help me understand some things

Thanks Msjhawk for your reply. I am anxious to get some kind of dianoisis. Today has been a hard day for me , we are in Louisiana and the storms have moved in. I tossed and turned all night and felt alot of numbness in my body. The weird thing is that sometimes I can't feel what direction my , lets say the foot, is in. I feel a lost perception of the direction it should be in.

That is why I always thought this was just Fibromyalgia because I didnt know that the weather, heat could affect someone with MS like I have read that it does.

 
Old 10-29-2009, 04:06 PM   #4
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Re: please help me understand some things

For me, my MS quirks increase with the change in weather. You mentioned fibro. My sister has it and the low barometric pressure bothers her considerably. My problem is with the changes in weather. If it is roller-coaster-like, my week is shot!

As to losing directions, LOL, I have been there. When I walk, sometimes, I have to look at my feet in order to get them moving! Through it all you have to find the fun stuff to think about, otherwise, it can really drag you down. You learn to laugh at yourself and appreciate the many blessings you receive each day. Stay strong!
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Old 10-29-2009, 07:43 PM   #5
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Re: please help me understand some things

Thanks so much for the encouragement.. This week my MIL has pulled thru bladder cancer, my FIL is due for news on MRI results , so I am grateful no matter what my news will be, because I see that ya'll are making it with your diagnosis. I know it isnt going to be easy, but I have been thru 10 years of something, and I just hope to learn to live with it the best way that I can. Thanks again for being so upbeat and with a sense of humor, I guess that is the best medicine.

 
Old 10-30-2009, 01:58 PM   #6
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Re: please help me understand some things

Hi Dede


Quote:
Originally Posted by dede66 View Post
Again.. will they diagnose me on symptoms if the test come back showing no lesions?
I have been diagnosed twice with MS by my Urologist at the time. (2005) As the Urologist, made the diagnoses - it didn't mean I had MS at least according to the idiot Neurologist I seen.

I had two MRIs that clearly showed lesions, and reports suggest MS. I was told to forget MS. So over the next 4 years as symptoms of MS possibly Lupus continue to multiply, I am no further ahead with the diagnoses. Doctors are now starting to look at MS again. After being diagnosed with Celiac, and following the diet, my high lupus readings are within normal range. I have a number of autoimmune diseases.

I have many of the symptoms you have. Ongoing bladder problems, blood in urine, lot of Central Nervous System problems, and my list continues to grow.

Here, if a Neurologist doesn't diagnoses you with MS, it means you don't have it. I honestly believe I have MS, just need to find a specialist who deals with MS, who can recognize my symptoms, and can read MRIs that clearing showed lesions.

Hope you get answers. I understand you can be diagnosed positive without positive Lumbar tap rings, not sure about not having lesions.

I still riding the fence.

Hugs

Gerri

 
Old 10-30-2009, 06:46 PM   #7
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Re: please help me understand some things

Gerri, I honestly feel in my bones that I have MS. For the last three years I thought my fibromyalgia just got better, not gone, but so much better. Until last year, I had the same old flare ups , seemed like every other month, I was in so much pain. The pain wasnt what scared me the most, it was the numbness, the swallowing difficulting, my walking and even my thought and speech were out of wack.

I just want a name of the face of whatever is going on with me... not just for me to know, but I have kids and I dont think they understand that something is really wrong. They have seen me down, and they see me when I can do. I just fear being labled lazy ya know, it would be easier if I could tell them that I have this or that and that I am doing the best that I can. It would just ,,, well honestly say...see I told ya I was sick, I wasnt being lazy..lol.

 
Old 10-30-2009, 07:15 PM   #8
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Re: please help me understand some things

Dede, lets walk this road together - I am there with you and I know how you feel. We are not lazy - we definitely have health issues going on that are causing major fatigue.

This is 2nd reply - I somehow wiped the last one out. This one is much shorter - I am too tired to type anymore.

Hugs
Gerri

 
Old 10-31-2009, 04:38 PM   #9
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Re: please help me understand some things

Quote:
Originally Posted by dede66 View Post
Gerri, I honestly feel in my bones that I have MS. For the last three years I thought my fibromyalgia just got better, not gone, but so much better. Until last year, I had the same old flare ups , seemed like every other month, I was in so much pain. The pain wasnt what scared me the most, it was the numbness, the swallowing difficulting, my walking and even my thought and speech were out of wack.

I just want a name of the face of whatever is going on with me... not just for me to know, but I have kids and I dont think they understand that something is really wrong. They have seen me down, and they see me when I can do. I just fear being labled lazy ya know, it would be easier if I could tell them that I have this or that and that I am doing the best that I can. It would just ,,, well honestly say...see I told ya I was sick, I wasnt being lazy..lol.
Your attitude is very good. I truly think that the feeling you get in your bones is often spot-on. When my MS got really bad in 2002, I knew it was coming. It was like watching a freight train headed your way and not being able to avoid it.

Having a name of your "enemy" is essential. Not knowing or waiting on "Dr. Doubt" can be very frustrating. It is important to study and learn as much about MS as possible and to take a pro-active approach with your doctor. I think that if you are gung-ho with your battle, you encourage the doctors and nurses who will be assisting you along the way. Stay strong and stay positive!- the path you are now treading has been worn and marked by others who have gone before you.
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 10-31-2009, 05:11 PM   #10
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Re: please help me understand some things

Thanks so much for understanding . I think I am going to try and read up on others personal accounts with MS , just to compare. I mean I have read symptoms of ms on sites, but i am learning so much more from real life experiences. The way things are described , like the feelings you have when you have a flareup are so much better to read than just reading that pain is a symptom ya know?

Again thanks for the support, will keep ya informed going Nov. 5 hopefully get results then. hugs dede

 
Old 11-01-2009, 06:01 AM   #11
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Re: please help me understand some things

Dede66,

Ive been following your posts and think you are definately on the right track with saying "you feel in your bones" that you have MS....you have to be your own advocate in a situation like this...
Although I can certainly understand your need and desire to have a name with the symtoms, be careful what you wish for! Having MS is a label....one which will follow you with insurance companies, pre-existing conditions and even emloyment, should you decide to share that info...its not always pretty.

I am also 42 and was dx 4 years ago...it changd my life considerably as far as my goals and my dreams. HOWEVER, for me, it was a positive thing. Since my dx, I have finished my MBA, started my Doctorate- all because I have some inane need to prove to the world that MS doesnt have me, that I have MS under control. Im also married with 3 kids...

You keep asking about others experiences. One of the first thing you need to know about MS is that no two cases are alike...no two cases will present the same way. Its called the snowflake disease for this reason. You might find that you know someone with similar symtoms. We all have fatigue and to some extent similar issues; however those issues do not necessarily mean its MS. So many diseaeses present the same way , thats what makes MS so hard to diagnose.

I highly suggest you go see a MS specialist. These doctors can not only dx but also rule out MS. Take all your previous tests, results, blood and pathology labs, doctors notes (if you can get those) to a MS specialist and let them review it....let them order new tests and updates- and see where it gets you. Its not unusual to have both Fibro and MS; just like its not unusual to have Lymes and Fibro or Lymes and MS...but only a well informed and literate MS doctor will understand that the pains and symtoms you describe deserve a second look! I wish you only the very best of luck in your dx....I feel your pain in your posts with not knowing....

You be strong. And continue to be your own advocate. No one knows your body like you do- so keep pressing on until you get answers. But, start with a MS specialist...youll get so much further and so much faster!

Best to you..
Nikki
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Old 11-01-2009, 09:00 AM   #12
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Re: please help me understand some things

Thanks Nikki, I am going to a teaching hospital and I hear they have a clinic just for MS, so I am in the right place. I didint think that I may have fibro and MS. I guess it could be just fibro, I hope it is. I just know that you are "supposed" to have these trigger points on BOTH side of your body equally and I only have this pain , on one side. Although I have a numb top of my left foot, and tingling places everywhere. The muscle pain is mostly just on my right. That is how I came to look into MS, because I searched the internet and most , if not all Fibro patients talk of the all over pain, not just one side of body only. Weird huh? I will just let the drs keep looking until they figure something out........with my proding all the way. I wont let them tell me they cant figure it out..lol atl least I am not going to give up on finding out.

 
Old 11-01-2009, 12:38 PM   #13
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Re: please help me understand some things

Good for you, Dede! Let us know how it turns out after your visit!!
Nikki
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