Dr. Appt

[sarahw244]

Hello all!  I hope everyone is doing well!  Haven't heard a lot from some of the older members so I hope that means that everything is going good.  And also, welcome to all the new members!  =)

I have a follow-up appt tomorrow morning with the MS specialist.  I am not anticipating anything at all.  I am only hoping that I will get some symptom management.  I have been having HORRID muscle spasms for the last few weeks and have not had any muscle relaxers for a few weeks either.  Because I switched neuros, I was unable to get a refill on a few of my medications so I am hoping that the MS specialist will be willing to refill those.  My PCP pretty much refuses to treat my symptoms, which is really irritating when my specialist is over an hour away.  This means that whenever I have symptoms I either have to go to the walk-in clinic or try to ride it out.

The walk-in clinic is pretty good to me, but working in healthcare, I kinda know what they think of you when you are a "frequent flyer".  The doctor that works in the local walk-in is always the same and I have explained to him my situation of a PCP who refuses to treat my symptoms and a specialist who is over an hour away and who also doesn't just treat you over the phone, if you know what I mean.  Like I can't just call him and tell him I am having problems with this or that; he wants to see you in person and that's not easy to do when he's so far away.

So anyways, I will update after my appt tomorrow afternoon.  I hope this finds everyone doing well!  Please check in if you get a minute just to let me know how you are doing!
(((hugs to all)))
Sarah  =)

[DebDJ]

Dear Sarah,

Oh, I am so sorry you had to go through the same old @#$% again!  And I hope you can really feel the true sincerity of these words.

I am, however, happy that Maria mentioned the similarities of MS & Fibro because I was going to tell you about an article I read about some of the most recent research findings that were found this past year. I apologize for not remembering who directed me to it or if I found it through my own search for info.

This particular article states that this research points favorably to the theory that many of the "MS Mimic" syndromes such as: fibro, RLS, CFS, etc., are actually individual entities that are covered by the "umbrella" of MS, which is thought to be inclusive of the others.  

The researchers are very excited, of course, bc they have received the go-ahead to do more study(ies) using humans, since the results were so good using animals (SORRY TO EVERYONE who is offended by use of animal studies!)

I will see if I can find the article for you, or it you come across it in you own search, let me know.

Again, I am so sorry you are having such a difficult time as you are searching for answers, My Dear.

I know it's hard, but please do KEEP LOOKING UP!

Dee

[MrsAristotle]

Oh dear that old chestnut again Fibromyalgia lol....

Did you know that many people with MS also have Fibromyalgia....and there are thoughts that the two could come alongside each other....

Very good article about the comparisons between the two.

http://www.chronic-pain-management-support.com/fibromyalgia-and-multiple-sclerosis.html

Ok Sarah so where now?

I am the same as you...i have given up chasing a label and just want to get well so I have taken my recovery into my own hands.

Whether or not you have fibromyalgia or MS the result is the same...you are ill and worried that you could deteriorate further....

I am posting what I am doing at the moment, you might find it of interest.

I would read up all about fibromyalgia and start some treatment for it i.e. homiopathy and see if it helps.

Lyrica is great for fibromyalgia, because it also helps the IBS that comes with it.

Fibro does affect the nuro system ..... basically it is thought that the signals get stuck on high and that is why there is a lot of sensory problems similar to MS.

Dont give up. Big hugs. Maria

[Sidesteps]

Hugs Sarah, I'm sorry. Hang in there girl. I was referred to a Rheumy for Fibro and he ruled it out in 5 minutes. I have no pressure points. I'm not in pain though either. Just sending you a big bear hug from Seattle. (((Sarah)))

[sarahw244]

Ugh is all I have to say, lol.  I think the reason that they said fibro today was because I have so much pain.  That is all any of them seem to focus on.  The pain does suck, but in a way, your body kinda gets used to it.  Sometimes it is worse than others, but it is always there.

I was actually seen by a physicians assistant today.  At the end of the very short visit, she said she would take my MRI CD to the neuro to review and that they would be back in a little while.  They came back not even 2 mins later.

I have on my neuro exam: positive Babinski sign, hyperactive reflexes on my right side, foot drop, not able to do the heel-toe, tip-toe, or heel walks, and I have tremors on my right side only.  These are the things they can see.  The things they can't see are the pain, obviously, the numbness and tingling, the swallowing problems, the cognitive issues, and the muscle spasms.  Well I suppose they could feel them if they would try.

So anyways, I think this is why they said fibro.  Maybe they're right?  I don't know, but from what I know about fibro (my mom has it) it causes muscle pain, not nerve pain.  It has trigger points, which I don't have.  I guess I do have some of the other symptoms, like IBS and dizziness, but who knows.

Yes, I am in a lot of pain, but what about the other stuff?  What I would really like more than anything is to be able to use my right foot again.  That hinders me the most, I think.  My mom sees the pain specialist I am going to and he's supposed to be really good.  He specializes in fibro pain, so we'll see if he thinks this is fibro.

Anyways, thanks.  It means a lot to me to have the support of everyone here and to be able to come here and vent!
(((hugs)))
Sarah

[jibjen]

Hi sarah,

I am so so sorry for this horrible run around you have been going through. I can not beleive it. Give the med a try..If it can only help you. please try it.

I jjust don't understand how this can happen. Can they not tell what is going on? and how can they get Fibro from anything? did your doc examin you? 6 months is a long time...I see what you mean...if it is this then treat it.

I am so sorry for your pain and frusstration. I hope you can get some rest and have better luck with Thursday's appt.

Jibs - big hugs to you

[sarahw244]

I'm back.  The appt didn't go nearly as well as I had anticipated, and I wasn't anticipating anything really.  It was basically a waste of my time and money.  I didn't have a copy of my MRI the first time I was there and was told to bring one this time so they could review themselves.  I brought it and they basically just read the report.

I was told I probably have fibromyalgia.  Fine.  If that IS what I have, fine, then treat me please.  I was told I was being sent home with a refill for my meds for my tremors-nope.  I was told I was getting a refill on my muscle relaxer-nope.  I was also told they were giving me something else I can't remember-nope.  But they did give me a script for Gabapentin.  I don't really care to try this stuff, but I'll give it a go I guess.

I am not sure why, but this doctor wants me to come back in 6 months.  I'm not going to bother.  If I do have fibro, I will just see someone closer to me.  This doctor is very expensive and he won't treat my symptoms either.  I don't care what I have anymore, really I don't.  I just want to find someone who will treat my symptoms and I don't understand why I can't find a doctor who will.  They all ask about my symptoms and when I tell them, they pick ONE to treat.  It's usually not even my most bothersome symptom at the time.

Anyways, I have an appt with a pain specialist this Thursday, so we'll see how that goes.  I won't get my hopes up.  
Hope everyone is doing well!
(((hugs)))
Sarah

[DebDJ]

Hey, Sarah-

I will be thinking about you as you go to the doc tomorrow as well. I will send you all of my positive thoughts of strength and courage.

I see my doc on Wednesday.  I just know the appointment is NOT going to be a pleasant one! : (

I am soooo tired of this confusion it seems we all must go through...but, please, try to keep looking UP!

Dee

[illinwithoutacause]

dear sarah,

my thoughts and prayers are with you tomorrow a.m.  and i hope you can some suggestions as to how you can relieve your spasms, etc.

i am the same.  surviving.  sort of.  

xox
IWC