What a day :(

[tripnstumble]

I have not been diagnosed as of yet... And not really asking a question so much as complaining, I know my poor hubby gets tired of hearing it lol. Everyday for the past who knows how long has been a pretty icky day. But today for some reason a few issues seem to feel like kicking me to the floor. First I have a big issue with balance and being in the dark just makes me 100x's worse. I use to never have balance issues, I was always right on as a kid. I sat here thinking just how bad it has gotten over the years! I use to love doing the balance beam in school... now! Holy cow forget it, just looking at it would make me fall over. Talking, forget it I have no clue what I'm attempting to say half the time I can't hold a darn conversation. I tried talking to my stepson earlier today and how many times I had to go into stupid detail over one object I was talking about. It's like playing the game Pyramid, I'll give you clues and you guess the words lol I'm having issues with swallowing again and coughing which seem to come and go so randomly. Of course the pins and needles never leave. And having to pee. Grant it, I'm very, very thankful I am able to hold it, BUT having to try and get to the potty every 10 minutes because I feel as if I haven't went in the past 6hrs and have been drinking gallons all day is just irritating me. Everyone is in bed and although I have night lights all over my house they just are not enough for me. I'm all over the place, hanging onto walls and banisters ughh

I go to the Dr. on Monday (new PCP) and so help me if they try and tell me it's depression, anxiety etc. I have been told this for so long and have tried so many medications because they make me think I'm crazy and I'm not. Well, I might be soon if they don't figure this mess out :) Why is it so hard for a Dr. to accept they don't know what is wrong with you and send you somewhere else? If you don't know, then so what you just don't know. I rather my Dr. tell me he has no clue then tell me some off the wall diagnosis just to try and shut me up.

[tripnstumble]

Yes, this has been one LONG annoying ride that I'm ready to get off of :) I've had some real wacky symptoms over the past year. But, today and yesterday they all seem to want to show up. Can't swallow, fingers twitching etc. these things don't usually bother me very often. Waiting for my face pain to start in. Maybe it's sort of good everything wants to come out now and show it's self. This way my Dr. can hopefully see it all.

I honestly would not doubt that I am depressed now. But, it sure has nothing to do with my life. It's this mess of symptoms and quality of life I have is what is causing it. Find out what is wrong and I bet my depression would leave! I will tell them that to if they mention depression lol

I make candle tarts/melts to keep myself busy when I can. Keep my mind off of my symptoms and how I feel etc. It actually does pretty good. It takes me awhile to get myself together in the morning but once I do I'm usually pretty good to go for a few hours. Today on the other hand was not one of them days :) But, tomorrow will be much better I'm sure. I have a bunch of fall scents I want to make! Yummy... MUST feel up to it tomorrow :)

Thanks everyone and of course will keep you all updated after my appt.

[LisaJF]

I think it is hard not to anticipate doctor's responses and their lack of compassion for what you're going through and their dismissal of your physical symptoms just to blame it on depression and anxiety.  Granted, we all suffer from anxiety when we come up against something "unknown" when we know something is wrong with our body.  We constantly say to ourselves, "this is not normal".

I know if I were to switch MS Specialists and PCP that I would anticipate their responses as to why I switched thinking perhaps I was not happy with the outcome (which I'm not) and would rely on what their findings are instead of having a clean slate with some factual information you bring along ie: MRI, bloodwork, LP, etc.

It is no wonder anyone's anxiety increases when they are put through the ringer of tests and things come back normal or semi-normal or not the "classic" picture.  

I know that most here if they felt they were "depressed" and had anxiety issues that they would address those issues instead of worrying whether or not they have MS.  I mean who wants MS -- a progressive demyelinating disease?  I would rather pop an Effexor and go to psychotherapy twice a week then have a diagnosis of MS.  Unfortunately, I do not feel that your issue.

What is driving you insane is the unanswered questions of what is causing you to have what you have and no one is stepping up to the plate to say what it is.  Why? I have no clue, but I know you're not alone.

I do wish you the best with your new GP and hopefully new Neuro.  You deserve competent care, compassionate care and most of all empathetic care in that you are the one who is suffering the physical ailments.  You go home and deal with this as they walk away and go to their home and sleep well at night with no physical ailments.  (Perhaps some MD's do have physical ailments but it can't be that bad if they are still working).

Let us know how it goes.

Lisa

[Deb61]

I'm happy to hear that you have a good case worker.  This is a very good thing.  

I hate roller coaster rides!  I know what you mean, but once you  get a correct diagnosis, you won't believe what a huge weight it was when it is finally lifted off your shoulders.  A diagnosis opens the doors to the right treatment and restores hope.  Right now, you're in limbo, and it really stinks!

  

[tripnstumble]

I can't even remember my apt. they just called me. It's Tues. not Mon. LOL Good thing for phone call reminders :/

I guess I will spend the weekend trying to recall the past 20yrs of my life :) This should be fun. There are things that I recall easily, and of course things I don't so it'll be a project getting this timeline as close to correct as I can. I am also going to ask them about taking other blood work if he doesn't mention it. My B-12 lvl wasn't "low" when they checked it, but sure not high either. It was 248 and my rheumy said 200 or lower would cause symptoms but he had wanted to check it again in a few months. But, I haven't gone back yet. I have not been up to the 2hr drive each way. My Grandmother I just found out had a B12 problem and had to have shots for it. So, who knows? Sure would be GREAT if it were just B12!!!! A shot and I'd feel great!

I figured I would tell him my cousin is a nurse (and she is) and she mentioned MS as a possibility (she hasn't but he don't know that LOL)

Just not so sure I'm ready for this roller coaster again after taking off 4 months. I needed a break from constantly hearing "All your tests are neg." UGHHH

If he does decide to do an MRI without a neuro. I figured I would call each of the hospitals to see what type of MRI they have and whoever has the one I'm looking for is where I'll go. Almost all our hospitals are in one network here so I can go to any of them if I want for any of the tests I get done.

I also have a very nice case worker who has been helping me with my Drs. and getting them in gear to do things. If he doesn't see the need for a Neuro. I will call her and she will get them to send me to one and even make the appt. When I tried getting my rheumy appt. they told me the waiting list was over 6 months. When I talked to her and told her she said let me call you back. She called me back and got me in for 3 months instead of 6 months. Not great, but better :)

We shall see how it goes and if anything interesting happens on Tues. I will let you know.

[Deb61]

I would make your list very brief.  Your list can include the details you've outlined so that you can remember everything if asked.  Don't down-play your symptoms and say it was probably this or that.  Let your doctor figure that out.  State the hard facts . . .

1991- pins and needles upper back, overwhelming fatigue, tests for lupus negative

2009-  migraines, skin hurt, muscle spasms, dizzy, shaky

2010- severe muscle spasms and fatigue, pins and needles (where?), high sed rate,

I would list everything because MS is so weird.  You never know if there's a neurological cause.  I know this was silly, but just before I went into to see the neurologist, I was eating shaved ice after I drank a soda.  I couldn't speak because my tongue was numb.  I thought everyone's tongue was numb after drinking something cold.  He said that this was due most likely to a neurological cause.  I have other weird symptoms, too, but don't want to bore you.  But, if you have creepy crawly things (for example) sensation on your scalp, write it down.  It doesn't cause you misery, but it does give your doctor some information.  Also, be sure to write down exactly where and when the symptom was.  Something starting in both feet in ankles has to be something besides MS (I'm not good at explaining), if it did indeed start this way . . . However, if you state it this way--

2009-
Jan (approx)  left foot tingly
Feb (approx) right foot tingly

Sometimes people with MS, though, will develop the same symptoms in both sides.  This is not as common, but with TM (which some people with MS get) you will have symptoms on both sides.  So, if you have symptoms on both sides initially, state it.  I have symptoms on both sides, now, but I've had MS for years.  One side is worse than the other, like in my feet or hearing, but it is in both.  When I get attacks, they are always one-sided.  

I wouldn't leave off anything.  I know I will get disagreements on the forum, but if you leave something off it looks like you're trying to make yourself look like you have one illness over the other.  But of course, don't list trivial things that don't relate to anything (like having the flu, etc).  If you keep your list concise, your doctor can scan through it quickly and it won't be so overwhelming.  Your list, though, should be detailed.  You can even write yourself notes and questions.  I've had my doctor take my list of questions, and he answered every one of them.  

Be sure to keep it factual and do not explain away or down play your symptoms.  Some doctors are lazy, and want an easy way out.  Maybe you should put the ball in their court and just ask, "Could this be MS?  This sounds like the symptoms of what my friend Deb has . . ."  I'm sorry to keep going back and forth on my opinion--to be quite honest I don't know for sure what I'd do . . .

Deb

[tripnstumble]

I sat here last night thinking about this whole timeline thing and when I felt my first "symptom". I don't know if it was or not? What do I tell my Dr? Do I tell him ALL my symptoms when I think the very first one started? I don't wanna go in there sounding like a complete wacko either lol

1991 Is when I felt the pins and needles start in my upper back. It would only last a few seconds and go away. I had just had twins and already had a 1yr old so fatigue seemed pretty "normal" at the time. But over the years it got worse and that's when the testing for Lupus started which since then has always been neg.

2009 (Nov.) I had what I believe was my first real attack, whatever you would like to call it. And I was going to this same Dr. when this happened. I was taking Neurontin for migraines and it did help, but my dose was getting way to high and seemed to just be making them worse. So, I stopped taking it. A few days later I got so "sick" my skin hurt, my muscles just spasmed and I felt like I was going to die lol I was so dizzy and shaky. I went into the Drs after about week of this and he said he didn't think it was from stopping the neurontin cold turkey but possibly so I started taking it again and stopped it slower. A few days later I was "better" Not better, but better then that! Wow that was terrible and I just blew it off as a withdrawal symptom.

2010 (April) It all hit me again like a brick (by this time I was seeing another Dr. the one I just left cause his secretary was/is an idiot) Muscle spasms, fatigue so bad all I did was sleep etc. That's when it hit me something was really wrong and the blood work showed the high sedrate and the all over pins and needles started and over the past year everything else has been popping up.

Is it possible that this could have all started back in 1991 and have taken this long to really show all my symptoms?

As for the MRI, if he does decide to do one without sending me to a neuro. first I figured I would call the hospitals since their all in the same "network" and see who has which MRI and that's the one I'll go to. I am not having my records sent from my last Dr. to this Dr. so do I mention the MS possibility or let him figure it out on his own? Eeks lol I've just been dealing with all this for so long I want it over with and sure do not want to screw things up by doing the wrong thing come Monday. This has been going on for 20yrs now. I've felt like hell longer then I have felt good... I'm only 39.

[Deb61]

I'm pulling you!  I'm hoping that your new GP writes that referral for a neuro.  Because your PCP isn't as likely to order the right things for an MRI, I would wait to se your neurologist and let him/her order it.  If you have your MRI on too weak of a machine without MS protocol, it could be a total waste.  Plus, the MS specialist (a neuro who specializes in MS) would be best.  This doctor will order images of your brain and spinal cord.

You've got something going on and you're not crazy!  I can relate to most of your symptoms.  

Pulling for you on Monday,
Deb

[tripnstumble]

Let me add that a high sedrate and Prednisone is so far the only thing that has helped me. I am not nearly as bad as I was last year at this time. But, I sure do not feel great either. My muscle spasms aren't as bad but still there. I wasn't as off balance last year as I am now though. Last year all I did was sleep and now it's not nearly as bad. I can at least function now where I couldn't last year.

[tripnstumble]

I have had to much blood work taken over the past 10+yrs. For the longest time it was Lupus but when that came up neg. then it was depression... And I fell for it for a very long time because my symptoms weren't always bad, actually pretty minimal. I thought, maybe they are right. But, last year it hit me like a brick. That's when the vampirism kicked in. They took so much blood in the past year. Ugh my left arm they can't get blood from anymore due to scar tissue... Everything that has to do with blood has been neg. and each test has been done two if not three times. I did see a chiropractor who really couldn't feel anything odd, I went to him to see if it would help with my headaches/migraines. Three times a week and no help. Rheumatologist was no help he couldn't find anything. I do have Tarsal tunnel syndrome (so I had been told 15yrs ago which now I wonder about) and my last EMG for that was about 6yrs ago which was neg. and my last MRI (not sure which) all I was told was they couldn't see any reason for the headaches/migraines. But, I just spent the past year dealing with the Rheumatologist so now I'm onto the next hurdle. New PCP and hopefully at least an MRI/Neuro.

I have lights everywhere in my house lol I have to laugh sometimes because I feel like a little kid afraid of the dark :) And shesh... I am afraid of the dark now!  The second it's dark I start to get all goofy feeling and my balance really goes wacky.

One thing I do recall very odd and even the Chiropractor couldn't answer was when he would do his pushing on my neck my right calf would instantly go numb which makes me think it's some sort of a neuropathy issue but the other symptoms I have do not fit the neuropathy thing. Who knows.

Some of my symptoms (not all)
Coughing
Choking (not often)
Food/Pills feel stuck and can't breath or just feel stuck and hurts like heck
Drool sometimes (maybe I'm just lazy lol I dunno?)
Can't get words out to save my life sometimes
The whole as I call it pyramid game when trying to talk to someone. They always have to guess what I'm thinking.
Constant pins and needles from thigh to feet and hands to elbows. Sometimes my face.
Only one bad attack with my eyes and I thought it was a new migraine medication. Not sure. But I do get blurry eyes a lot. Dry eyes
Terrible heat/cold intolerance.
Muscle spasms
Dizzy, sometimes vertigo feeling so bad I can't get out of bed at all (not often)
I sometimes feel like I have a strangling feeling in my upper thighs (had arteries checked and all is good)
I'm throwing it all out there :) NO sex life at all and only 39. Thank GOD my hubby loves me lol
Constant constipation
Very stiff feeling at times. I have been put on Mobic to help but it doesn't help.
The whole having to pee issue and no urinary type infections etc.
Fatigue
Hands and feet are always cold or hot. And at times my head feels like I have a fever but I don't...
And BAD insomnia

Anyhow that's enough before I depress myself :)

[Willowwoman777]

Wanted to add that they are actually those Christmas electric candles, so they are brighter than nightlights..I know it's hard, but what have they ruled out? Have they ruled out diabetes for example. Have they done a MRI yet? Let us know, please :)

[Willowwoman777]

Hi. I can not navigate in the dark either. One of the first things they told my hubby was to make sure there were night lights all over the house. My balance is worse, now, too but at least I know why..I have a new lesion in the area of the brain that controls balance. Just hang in there. If they try to tell you that it is depression and you know you aren't depressed, that's just what I would say..I have a great life and I know my own body and this is not depression...

Hugs

[grannyhotwheels]

Hello and welcome to the wonderful family of diagnosed and undiagnosed and everyone in between...  I feel your pain as I know so many here do... Even us that are diagnosed still remember what it was like looking and praying for answers...

Have you ever had any test ran at all?  What about blood work up's?  Are you keeping a time line of your symptoms?  If not it's a great idea... If you will look in the top right hand corner of the page where it says Health Pages (yellow icon) it will explain the time line and also answer just about any questions you might have...

Hopefully this new doctor will help you on your journey... If not then keep moving on... If he tells you it's depression or all in your head then please ask him to refer you to a Neurologist/MS Specialist... Let him know how long you have been dealing with this and you know it's not in your head...

A good doctor will listen and then they will get the ball rolling with the test... If they can't explain what's going on then they should automatically refer you to someone else...

Good luck to you and please keep us posted on what the doc says... Also feel free to come and vent, ask questions, or just talk any time you want to...

I'll be praying,
Carol