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Old 10-28-2009, 11:42 PM   #1
Join Date: Oct 2009
Location: Bealeton VA
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JabisonSams HB User
Hi Need Help

Not sure what this could be its for a friend that asked me to help her out b/c she's in too much pain and gets too fatguied to do this herself in her words these are her symptoms:

When it started is debatable. My doctor goes by March 09. I go by December 08. See, in December 08 I first went to the doctor because I was having really bad dizzy spells especially at work. If I bent down to clean something and got up my head would start spinning. It kept getting to a point where I had to sit down when a spell hit and they were occuring numerous times in a night so I finally went to the doctor about it. I didn't have the flu or strep. She thought I may have had mono, but never tested me for it. She just gave me a medicine for what she said I had, vertigo. I took the medicine for about two weeks and it really helped. No more dizziness. I was like, ah I don't need it anymore. It is gone and I stopped taking the medication. For three months my life went on normally.

In March 09 I had my first "flare up." I was in excruitiating pain everywhere and didn't know why. I thought at first it was the work load so I took a couple days off of work only to find even being off work the pain was the same. Concerned about the pain I went back to the doctor. She pushed on me in a couple of spots and it hurt so bad I almost screamed. She ran about 13 different blood tests and put me on Lyrica for fibromyalgia. All the blood tests came back fine. The Lyrica didn't seem to do anything. I thought okay maybe I just need to rest more or something because within two weeks the pain had ceased and I hadn't been taking any medicine. I thought I was just being whiney which I'm not, but I thought that maybe I was just stressed and was whining or something. So, everything went back to normal.

In July 09 it was back to the doctor. I was having a lot of pain everywhere. My legs got to a point where I felt like I could barely walk. Some days I couldn't get out of bed because I was so tired, fatigued, and in pain even though I had been resting A LOT. The dizziness had returned as well. I went to the doctor and she did a sensation test. She said I had loss of sensation in my feet and hands. It didn't seem to concern her though. She thought my muslces might be inflamed and gave me a muscle relaxer to take. Again, it didn't do anything and within about a month the pain got better. I was still getting dizzy and fatigued a lot, but I thought maybe it was diet so I changed it. It got better, but was still there. I just fought through it and said I would see what happened with this.

Two months later in September it was back to the doctor. The pain was coming and going constantly. Every day was a suprise. I didn't know what day I would wake up and be able to get out of bed and what day I would be confined to the bed. Dizziness, fatigue, and pain all throughout my body. Sometimes stabbing pain that would shoot up everywhere. Sometimes I throbbed, tingled, and felt like parts of my body would go completely numb. I stood in the shower one day for 45 mins under hot water and I never felt anything. I stepped on glass and cut my foot and didn't feel it. I just saw the blood. This is when I started freaking out. My job wasn't being so understanding (they still really aren't) I was trying to explain it to them, but EVERYONE was making me feel like I was INSANE so I stopped talking about it to people even though I was suffering. I tried to let it pass, but it never did. I started becoming miserable and depressed over it because people were making me feel like I was crazy and this was all in my head. Some people had seen me first hand and would wander why I was limping around or so pale in the face, but I never had an answer to give them. I still don't. I went back to the doctor and she gave me cymbalta again for fibromyagia. She also said she was clueless and started a referall to the rhematalogist. This contiuned into October.

The cymbalta did not help the pain, but I kept trying to work and do school. Things I used to be able to do and more without a problem. I was struggling with everything and getting mad at myself that I was having such a hard time. The cymbalta made me feel like I was constantly spinning around in a circle so I couldn't go to work. My dr told me to give it another week because the side effects would go away. Well, the dizziness let up to what it normally was for me, but the medicine was making extremely depressed. I was scared of the way I was thinking so I stopped taking the medicine. The pain was getting worse. There were days I was in so much pain I was stuck on the futon. I was having people come over and help me so I could get up to go to the darn bathroom. I was becoming miserable and just wanted the unbearable pain to just stop.

Last Monday I attempted work after being off for two weeks. I felt like I wasn't in any condition to work. I was pretty much dragging my leg around all day. I was getting dizzy while doing my job and spent most of the night sitting down wondering what the heck I was going to do because my job didn't have a definite diagnosis of what was wrong with me so they were still giving me a hard time.

Last Tuesday I woke up almost unable to move so I told my work I didn't know when I would be able to return. Wednesday I went to the ER and was there for 12 hours. I could barely walk, I was dizzy, and having sharp pains shooting up in my head. They took 12 tubes of blood to run tests. All the bloodwork came back fine again. The dr said my reflexes were good. When he told me to stand up though, I almost fell over. He said they should do an MRI, so they did... Well, apparently he messed that up. I will get to that in a second. They put me on codeine for pain and told me to follow up with my dr and to see a rhematalogist.

I went to see my doctor yesterday. Well, the doctor at the ER had only done a CT scan, not a MRI. My doctor said it is imperative that they do an MRI of my brain and spine. A big concern doctors and nurses have told me was MS. I should know by the end of this week when I can get in to the rhematalogist and I am currently on two new meds. I am still in A LOT of pain. I sleep a lot, but have been trying to move around as much as I can, but let me talk about that too.

This past Friday night I was feeling pretty good. I was hurting, but had gotten to the point of saying I am not going to just lay around if I can get up. Well, I went to the movies. It turned out to be a disaster. Thankfully I was with someone who has known me for six years. Half way during the movie I let my head just fall over. He looked at me and apparently my face had went completely pale. I was extremely dizzy and thought I was going to faint. I put my head down and tried to make it throught the movie. When time to leave the movie he pretty much had to help me get out because I felt like I was jello. We got to the car and I pretty much fell back in the seat unable to move for about an hour. Once th dizzy spell ceased I went home. Home was only about 25 mins away. Not too bad although I shouldn't have been driving.

Friday night got worse when I went to bed. I became in UNBEARABLE pain. I was screaming and biting into my pillow and crying a lot. I called my friend and he drove back to Maryland to be with me because I was really scared. I slept most of Saturday, but finally got up. I wanted to go to Walmart to get a couple things. I was still feeling like jello and didn't want to drive. I was in Walmart with my friend for about ten minutes and I started hurting a lot. He knew because sometimes when intense pain hits I get a little mean. Okay, sometimes really mean, but I don't mean to. I snapped and he was like you hurt, dont you? I was like yeah, but I want to finish shopping. I tried so hard, but then the dizziness hit too. My eyes were hurting BAD. I started crying because I was so frustrated that I couldn't even shop. I ran out of Walmart to try to get cold because cold helps my dizziness while my friend paid for my stuff...

A few other things I've noticed... my eyes hurt really bad sometimes before I start getting dizzy or the shooting pain in my head. The pain hits everywhere from my wrist and fingers, to my back, legs, thighs, and arms. Sometimes it feels like something is going to pop out of my skin. Also my big toes sometimes drop back and get stuck in place. A couple of friends have witnessed this and just get freaked out. Basically this is what I am going through. I am hoping and praying the rhematalogist might have some answers for me.

Does that sound like MS?

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Old 10-29-2009, 05:43 AM   #2
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Re: Hi Need Help

Wow, Jabison-Sams. As a person who DOES have MS, I have to say- your post is very confusing to follow for me. Im trying to be supportive and answer your questions, but other then "does this sound like MS" I cant figure out what it is you are asking...

SO, Ill start by saying this. Welcome to the boards. We would love to help and support you; however I think it might be beneficial to all of us, if you get alittle more specific about what it is you are asking us. From what I did gather from your post...tell me if Im wrong...YOUR NOT THE PATIENT?? YOURE A FRIEND??

But whichever you are, you asked questions and Im trying to help- so lets see if I got any of this right/ (please forgive if I am confused, remember I have MS and cognitive issues)

You have a ton of pain. You are missing work due to pain. Pain meds dont seem to be helping you- and you saw a doctor who ordered MRIs and wound up with CT scans? Am I following this? And, your seeing a Rheumy, for what I suspect was Fibro, but probably isnt....

Im going out on a limb here. Your last few sentences are the only ones which describe the pain, the eye pain and the muscle pain which you are experiencing. It does sound possibly Neurological. This being said, you are seeing the wrong type of doctor and having the wrong sets of tests. At this point, I would start trying to find a neuologist who can start testing immediately for any number of things. MS presents the same way that LYmes and a hots of other diseases present. In fact, its one of the hardest dianosisis to make, due to everything else having to be ruled out before you can dx is it, or does it sound like MS?? Not anymore then it sounds like Lymes....or Fibro (which is simply a catchall phrase for nerve pain)....however I think you need a neurologist not a Rheumatoid speacilaist...

Just my opinion.

Im so sorry you are having the pain you are having....Some MSers have pain, many of us do not...its not the most common symtom (fatigue is). whatever is going on with you- sounds like you are in definate need of a doctor who will organize some testing and keep on top of things...start there. A new doc, possibly a Neuro to evaluate your symtoms....and see what that does for you. Obviously a ct scan didnt show anything (it wouldnt, except a pinched nerve or something along those lines) So please attempt to find another doctor and best of luck to you. Keep us posted, and sorry if IM confused, the post was slightly confusing for me to follow.
RRMS- dx 05

Old 10-29-2009, 08:16 AM   #3
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Re: Hi Need Help

Welcome and thank you for writing for your friend. It is good to have friends who are not fair-weather types, but who can be depended upon in the midst of adversity.

It sounds like your friend has issues presenting. While your friend might have MS, there are also many other things which could be the problem. It is perplexing why the doctors waited so long for the MRI. While they had her in the ER, I think they should have run the MRI. Get your friend to a neurologist who specializes in MS. I think it is time to seek the advice of a MS Specialist. If she does not have MS, the MS Specialist will let you know and should provide a referral.

While testing for MS is a long process which requires much patience, if it is not MS, the evidence should present earlier. I will keep your friend in my prayers. I hope she will "pop in" and share her concerns.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

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