Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Okay! Doctor visit! He was not as nice this time! He was very rushed & very short, & in a hurry to move on to the next patient! Didn't care for his behavior today & his lack of wanting to give me any answers or to discuss anything with me or to give me some kind of diagnosis w/o dragging it out of his ass! I mean, what the hell did he think I wasted all my damned time driving there for!? I mean the hell is going to spend a freaking hour driving to some stupid doctor off, unless they want to go over everything in detail & get some kind of diagnosis or thoughts on it!? I mean, hell! The nurse could have gave me the freaking lab results & film results over the phone! Said, that lab work was all reasonably good, nothing that indicated any other disease or problem.
Lab work: Glucose was high. Folate was high. Bun was low, HCT-low. LYM-low! Other than that!? Good! When asked & pressed he said that he didn't even check my UA level, which the other doctor bitched about! Said that my UA level was high & that I had gouty arthritis, even though I have no symptoms indicative of it! That seemed stupid to me! But he said that I have no symptoms of that & that the thinks that thought or dx is rediculous! So!?
So, he was going out the door after saying the labs were fine & the films were fine--both of which showed some things--but nothing pertnant in his eyes I guess!? And, so I was like HEY WAIT THERE! I NEED TO KNOW WHAT YOU THINK MY PROBLEM OR DIAGNOSIS IS!? I told him that when I came for my 1st visit that he said MS straight up & maybe possibly FM! Neuro said FM, PCS & possible MS! Anyway, then ask RA okay, is that what you still think, believe,etc... Do I have FM? Do you still believe that I have MS? And, he said; NO! I DON'T THINK THAT YOU HAVE FM NOW, BUT IT'S A POSSIBLITY STILL & IT DOESN'T MATTER IF YOU DO OR NOT, BECAUSE I DON'T THINK ADDING A DIGNOSIS TO WHAT YOU ALREADY HAVE IS GOING TO HELP YOU OR DO YOU ANY GOOD! So I said; SO! IN YOUR OPINION I HAVE MS,& THE OTHER DOESN'T MATTER! And he said; Yes! In my opinion I believe that you have MS! Your tests all came back fine & you don't have anything that falls under any RA dx! Since I have the symptoms of MS & everything else has been ruled out, that pretty much means MS!
So, he did not give me a diagnosis verbally but did put Chronic Fatigue on paper! But did say MS verbally, but refused to put it down on paper! He did perscribe more pain meds & did perscribe a Rollator--which I picked up on the way home! And.... he did agree to make me a referral to the MS doctor--Sybal Wray, in Knoxville, where I live! They are faxing over my records to her! She will review them! Then decide from that whether she will see me or not!
The neuro had faxed over a note wanting him to go ahead & order my TSpine MRI! I brought that up with him but he refused! Didn't even acknowledge that he knew about it, etc... Even though I heard him yell out in the hallway, before he came in--did you order that MRI for Mrs. ........... So obviously he did!!! And, I don't understand why he did not bring that up or acknowledge it when he came in! And, why he couldn't just state anything on his own about a dx! Or that he still believed the same thing! Which when pressed, he did, cept he backed off of the FM!
So!? I finally saw an RA, had all their tests done & have ruled out everything esle but MS so far! Have two more docs now that say MS even though they refuse to put it down! That makes
5 or 6! Then, my best friend & me! So even though it wasnt great & is still very frustrating I did accomplish ruling out everything else, getting more meds to help wit the pain, getting a rollator, & getting a reffal, finally, to an MS neuro--IF SHE WILL SEE ME!? Will be forever before I see her, or maybe even know--IF SHE EVEN DOES!
OKAY! THAT'S IT!
Lab work: Glucose was high. Folate was high. Bun was low, HCT-low. LYM-low! Other than that!? Good! When asked & pressed he said that he didn't even check my UA level, which the other doctor bitched about! Said that my UA level was high & that I had gouty arthritis, even though I have no symptoms indicative of it! That seemed stupid to me! But he said that I have no symptoms of that & that the thinks that thought or dx is rediculous! So!?
So, he was going out the door after saying the labs were fine & the films were fine--both of which showed some things--but nothing pertnant in his eyes I guess!? And, so I was like HEY WAIT THERE! I NEED TO KNOW WHAT YOU THINK MY PROBLEM OR DIAGNOSIS IS!? I told him that when I came for my 1st visit that he said MS straight up & maybe possibly FM! Neuro said FM, PCS & possible MS! Anyway, then ask RA okay, is that what you still think, believe,etc... Do I have FM? Do you still believe that I have MS? And, he said; NO! I DON'T THINK THAT YOU HAVE FM NOW, BUT IT'S A POSSIBLITY STILL & IT DOESN'T MATTER IF YOU DO OR NOT, BECAUSE I DON'T THINK ADDING A DIGNOSIS TO WHAT YOU ALREADY HAVE IS GOING TO HELP YOU OR DO YOU ANY GOOD! So I said; SO! IN YOUR OPINION I HAVE MS,& THE OTHER DOESN'T MATTER! And he said; Yes! In my opinion I believe that you have MS! Your tests all came back fine & you don't have anything that falls under any RA dx! Since I have the symptoms of MS & everything else has been ruled out, that pretty much means MS!
So, he did not give me a diagnosis verbally but did put Chronic Fatigue on paper! But did say MS verbally, but refused to put it down on paper! He did perscribe more pain meds & did perscribe a Rollator--which I picked up on the way home! And.... he did agree to make me a referral to the MS doctor--Sybal Wray, in Knoxville, where I live! They are faxing over my records to her! She will review them! Then decide from that whether she will see me or not!
The neuro had faxed over a note wanting him to go ahead & order my TSpine MRI! I brought that up with him but he refused! Didn't even acknowledge that he knew about it, etc... Even though I heard him yell out in the hallway, before he came in--did you order that MRI for Mrs. ........... So obviously he did!!! And, I don't understand why he did not bring that up or acknowledge it when he came in! And, why he couldn't just state anything on his own about a dx! Or that he still believed the same thing! Which when pressed, he did, cept he backed off of the FM!
So!? I finally saw an RA, had all their tests done & have ruled out everything esle but MS so far! Have two more docs now that say MS even though they refuse to put it down! That makes
5 or 6! Then, my best friend & me! So even though it wasnt great & is still very frustrating I did accomplish ruling out everything else, getting more meds to help wit the pain, getting a rollator, & getting a reffal, finally, to an MS neuro--IF SHE WILL SEE ME!? Will be forever before I see her, or maybe even know--IF SHE EVEN DOES!
OKAY! THAT'S IT!
I hate to say this but it is going to be up to a neuro to say you have MS. 14 years ago my PCP told me I had MS and he was made to retract his DX. After I did get my DX my PCP told me he has known for years that I've had MS but had to wait for the neuro to do the Offical DX. What is really sad about that is my current neuro told me I would probally have had a different outcome had I started a DMD if I would have been correctly DX'd by one of the previous neuro's. I'm happy to see that your going to a specialist and pray they find something else wrong with you.
Just be patient and as you know it can take a very long time to get a proper DX and that is what the end goal is A Proper DX.
Good luck and don't give up and keep us posted om progress
Take Care
Dave
Well! That's just it! The specialists didin't find anything else wrong with me! He tested for everything! Or darned near everything on the planet! And, I have many of these tests done several times, its safe to say that they are correct! And, that MS is pretty much my dx!
With me having all the symptoms of MS, & after this last MS type exaserbation from hell that I just went through for a week there; with that & all the other MS-EB things I've experienced over the years, & with things slowly progressing & getting worse each time!?--& with everything else being ruled out; MS definately seems to be it!
Add to that that 5-6 docs now have said that, & that I am being refered to an MS neuro for an MS evaluation & that makes it almost definate!
Add to that that my x-PT & best friend--who has a best friend that is a nurse & works with doc assistans all the time, & who has spent her career working with numerous MS patients & knowing me like the back of her hand saying that she is convinced!
And, even more, add to that that I, the patient or person having & living with this crap is absolutely totally convinced that I have MS & that I have been having MS EB's for many years now & that they have been hell & so far unexplainable by anything else I am convinced & have absolutely do doubt that in the end this will be my dx!
And, it just makes me sick to my stomach to think about!!!
Anyway thank you so much babe!!!
I am shot from my long day & about to fall asleep, & need to fall asleep so sleep & dreams for now for me!
Will check in tomorrow!
Also consider - acupuncture, massage & alternative therapies, that may help you in the meantime.
Take care of yourself.
So after that move I had something like a very severe MS-EB!? I was in severe shape, & could barely move, walk, or function! I was down for many months!!! About 6, at least I'd say! I didn't have any devises available to me, nor did I have any help! Family wouldn't/couldn't!? And, it was very difficult for me to get out of bed or to function at all! I had my little boy to take care of & my ole man, & I couldn't even take care of myself!
At the time, I thought I had done something terrible in the fall!? Maybe I did!? But I don't think it explains the MS looking EB that I had! Nor the length of time that it lasted! I was in severe pain!!!! Beyond words!!! And, spased so bad that I wanted to die! I was so weak!!! And, my brain didn't work either! I was real dizzy & off balance when I would try to get up or to walk!
It was either during this time or sometime right after??? that I woke up one morning & my rt side didn't work! Was that way for several days & then it slowly began to work again! And, one day during that episode I got in my tub to take a shower, & suddenly & w/o warning, both of my legs just went out! I wound up sitting in the tub for 20-30 min.... before my legs came back! I was terrified that they would not come back & that I would be sitting in the tub with the water running forever!? And, even if I were somehow able to call workers I was totally naked & did not want to be that way when they came! Nobody was there right then, & I just prayed sooo hard with all I had that they would come back at least long enough for me to somehow get out of the tub & get dressed, so that I could maybe have some clothes on & maybe have a phone next to me to call 911!?
Well!? I'm trying to do us all a favor here & not be too long in one message! So I will put just a little more about this in another post!
So that was my first! Then, the thing of waking up one morning & not being able to use my whole rt side! Then the 20-30 sudden sitdown in the shower! I prayed like crazy the whole time, & cried the whole time! And, God, I guess, gave me back my legs so I could get out of the tub or shower & didn't have to be there forever or be humiliated! So I went to Hammett--the 1st one to ever bring up MS! He is the doc at the urgent care center that I have frequented every since I moved back! So he got to know me well! I really loved him back then! He's burned out now & not so good anymore! But he was super intelligent!!! I told him about all of the bizzare shit that was going on & how it all happened,etc.... & he said that there was only two things, period, that could or would cause such things! And, that was mini-strokes, or MS! And, that it had to be one or the other!
I actually was sent to this same MS neuro at that time! She said that at that moment that she could not dx me with MS because no plaques showed up! But that it did not rule out MS on me at all! And, that it would be left at possible MS until I had more problems that were of great magnitude or until I had plaques to show up! I did learn at that time quiet a bit about MS, through her! She said that plaques were NOT the beginning of the disease! The plaques do not just pop up one day, like most people think & then boom you get MS from that! The plaques are the end result of the damage done by the disease!!! She said, that by the time I got the plaques that that would mean that I had had the disease for past 5-10 yrs, maybe more in some cases! She said that unfortunately, w/o any other way to dx it, that it would either take many more debilitating things happening to me or putting me in the hospital even, or the plaques showing up before they could label it MS for certain! And, that unfortunately I would just have to wait it all out & see! She put it down as possible MS, as I remember??? And, said that I needed to have repeated MRI's & MS work-up every 2 yrs! Or sooner if I had any severe or highly debilitating things to happen in between!
Things got much better after that year! Though it was slow! I mean I had lots of crazy weird shit happen, but it was always small stuff that the doctors blew off! I tried to tell all of them about the other shit & how I was supposed to have my work-up repeated every 2 yrs from then on, but they would not listen or pay any attention to me! And, would never do any of that!!! So, I never got any follow-ups!
Since then, starting approx 3 yrs ago? Maybe more!? I started getting wayyyy worse cognitively! That was where I noticed problems 1st! Thought it was just my PCS from the TBI shit! But then I suddenly got the flashing lights thing about 2-3 yrs ago! Then, later, last year, bout a yr ago now I got sudden blurry vision in both eyes, & my heart pounding in my left ear at the same time! Was in college, so it made it impossible to study right then or do my work! Flashing lights stayed with me for about 3 months!? Blurry vision at least 3 days!
And, about a 2yrs ago??? I woke up one morning with a sudden attack like this last one! Like what you woke up with Choppe! But mine was my whole body! Charley horses all over my body, including my head! Could not get any help or any meds & almost killed myself that time over that one! This last one was much like that one, cept it was just my legs & my arms! And, my breathing!!! That was really scary! And, I had non-stop very bad resp...infections for 3yrs straight! Was sooo sick!!! I have that under control for the most part now!? Thanks to a real good doc finally helping me to get that under control! When I get sick & get really bad sick!!! Takes me forever to recover! And, I lots of AB's & meds! And... when I get an infection, my BP bottoms out & I start passing out! I totally act like a person with an AI disease when I get sick! And, that sets off other MS type EB's! And, the other major thing has been, the past two years I get the heat intolerance thing--a huge sig of MS! I start sweating perfusely, legs turn into jello, then my brain, I start walking & stagering like a drunk, & then I start passing out!
So does all of that shit not sound like MS to you & others here!? Well! Thats it! If any of you think that this sounds like you & MS please let me know of that & your experience with that! Would love to hear about that!
Thanks for your patience! Sorry I went over 4!
I've had a long drawn out DX and I will share it with you in a PM as it was long and to long for the message board. I just wanted you to know that I,m not ignoring you and it will be in the next few days I write you. Just don't give uo hope and no you have;nt been treated right, but on the other hand please don't let it eat you alive like it can for so many people, just know that you are finally on the right track to getting a proper DX and as you know it will not come fast as it did not for me, For me it was over 14 years and there is good and bad that happend with it. So look forward from something from me and if I don't get right back don't be afraid to remeind me as memory is still a big issue for me and I would like for you to feel better about everything going on. It is almost the holiday so please don't beat yourself up as we are here for you.
Take Care
Dave
The medical society are such arrogant pompus A-holes!!! And, I hope that the ones who treat us that way get a taste of their own medicine soon!
I look forward to your PM! And, understand that it is the holidays & that it will take you time! Don't worry babe!!! :) I think your great no matter what!!! :) Happy TG to you!!! :)