Feeling a little uneasy. (long, sorry) UPDATE POST 44

[mommasita]

Hi everyone, I hope you are all well.

I am doing as well as can be expected. I have been given the lovely diagnosis of 'probably MS" after my last scan, and am now to see a neurologist. When I first got the call from his office, the secretary said he has absolutely no openings until April 27, and I said Thank you very much, etc. Two nights ago the telephone rings and she is adamant in telling me that after receiving my file and zillion tests and bloodwork, I need to see him much sooner than that, so she gives me MONDAY. This coming one, and she was extremely nice, as I must have sounded nervous (what else is knew), and that to bring my referral, and any drugs that I take, and we hang up. She has since called me 2x to confirm the appointment, and make me fully aware that I MUST go Monday. Gosh, I said, no problem, Monday it will be. She says, I just want to stress the importance of this!! Asks me if my partner can come with me. Whoa had me there. I said I don't think so, my husband will be home with the children. She says if it is at all possible to find a way for him to come, he should be there. Thanks nice lady.

I got to thinking maybe this Dr, is in need of patients, or whatever, so I did some searching, and he is VERY highly rated, a specialtist in MS, and on his site it has patients putting in their experiences with him, and they speak highly, and that the only thing that is bad is the waiting time between appt's. So I guess he is ok. Perhaps it is just it all in one basket that makes me uneasy.

Now to any with any experience. Should I make a list of my symptoms, my every day problems, or would that make me foolish, as he is the Dr. I just know I tend to get nervous quickly, and may not say the half of what I wanted, and come home and .. I am thinking I may do this anyway, and if I don't feel comfortable sharing, or he does not ask, just keep it in my purse.

I just a ball of nerves lately, not working makes me feel odd. I know that I could not right now, it jsut would be out of what I able to do, and that is not it. They are busy at work, and that makes me feel badly, but they are nothing but nice, as they know why I am on STD. I also want to get back to work soon, taking it slowly, not overdoing it, and I am just hoping for the OK on that. My husband is well, he does not deal very well. As loving as he is, and he is, he is just LOUSY with anything serious. He said, do I have to go Sher? I said no hon, you don't, stay with the kids. Sometimes easier that way.

So basically just that. Sorry to ramble, am having another insomnia filled night, and all these thoughts are scrambling through my brain.

I did want to share some good news, and some GREAT news. My firstborn will be 13 on March 18th, and it simply amazes me that my baby is now a teenager. The GREAT news, is my SIL is pregnant 16 weeks. I will be an AUNTIE, and that really makes me excited. She sadly lost a baby last year at 12 weeks, and wanted to wait to tell us (normally). I just am over the moon with joy, as our my children and DH. More babies for our Italian close family.

If anyone has any insight thoughts on what to do for and at my appointment, or even what might be expected on a first time visit, please share them if you can, it would be appreciated.

Take care everyone.

 

[EpcotKilterFan]

Sending back to you

I would make a list of symptoms and questions. It really will help. If your husband can't go, is there someone else that can be with you? Having someone else there to listen and get the information can be helpful.

While I have no one close to me that has MS, I have several co-workers and friends that have the disease. It is different for everyone.

Good luck to you.

Debbie

 

[kimis]

Yes diffently make a list of symptoms. It will help. Also do you have someone who can go with you. What one person forgets the other remembers.

Also know that MS mimics many things. I was given the diagnoses of probable MS last April. I was rushed to an neaurologist who told me that MS mimics many things including low B12 in your body. So don't let yourself get upset. My neurologist ordered more MRI's and blood work (a lot of blood work). My tests came back that two disc in my neck had pushed my spinal cord out of place, that my B12 was low and I had dopemine leaking in my brain (both of parents have/had parkinsons). My symptoms were pretty severe so I really thought I would have MS, lupus, or something else.

I was rushed once again to a neuro surgeon because for me at this point there was nothing else that could be done. If I had gone back to the chiropracter (which I liked a lot), had a simple car accident, fell or picked something up the wrong why I was in danger of near fatal or fatal injuries.

So try to relax---I know how hard that is. Wait and find out what the dr says. Get second opinions.

I worked in the medical field so I also know that a lot of recieptionest try to sound like that on the phone. Also a lot of drs don't like no shows (of course) so they are told to stress the fact that you can't miss your appointment.

It is good to check out your dr! I have always done that for myself and family members.

I will keep you in my prayers. Keep us informed. You can vent or talk anytime--we are here for you.

 

[mommasita]

Thanks to you both.

I do have Pernicious Anemia, and have b12 monthly shots, given at home. According to my GP, this has nothing to do with my B12...

You have given me some things to ponder. Thank you very much.

There is noone else to come with me, as I have not shared with my family (other than Dh), until we know for certain.

 

[KPeveler]

I would definitely make a list of symptoms and things you want to tell the dr, but make sure that it is no more than a page or so - in my experience, they only will read for so long... I find it easier than trying to remember it all. (been searching for a diagnosis for 10 years - almost there!)

 

[Mackey Mouse]

Ok.. these are my thoughts.. first lot of hugs and I will be checking for you on Monday to let us know how it goes..

Do make a list....questions, statements, whatever you need to get through that appt without forgetting anything..

I am wondering here why they are insisting you have someone with you......probably because they know that you may not absorb everything that will be said that day. I would bring a tape recorder and ask if they mind if you record what is said in the room so that you can review it later when your mind is more clear... No test are being done that day that you would need someone with you??

Hugs..

 

[mommasita]

Thank you to each and everyone of you.

My appointment is at 4:30, so I will update later that evening. Thanks for asking, how are things Marsha?

I was thinking along those lines. I mean most patients are nervous, and may not absorb everything. Maybe we can leave my daughter with my son for a bit, and hubby will come along. I will see on Monday how that plays out. The thing about this is whenever I have to do this, I have my mother on stand by. She is just going through so much on her own, and I don't want to raise her stress at all. I feel badly hiding so much, but I see her as fragile right now, and she is my world, and want her healthy for as long as possible.

I will make a short list, and offer it to the Dr. The thing about these first time visits, to me is, we really don't know their personality yet.

Well, thank goodness it is soon, so less time to think about it.

I think that other than this meeting, what worries me most is the weight loss. I just can not seem to get over this hump. I have lost 42 pds since December, without any trying. I wish I could say I exercise and eat better, but I don't. . I am not that type of gal. Not that I am in danger of being too thin right now, if it keeps up what then? And why is the real question.

Now I gearing up for a bunch of 13 and 14 year old boys tomorrow night to play playstation, eat and watch hockey . They are all sweet, and I really enjoy them.

 

[frdeb1999]

Hope all goes well for you on Monday. You will deffinately be in my thoughts and prayers.

 

[Nala56]

I lurk on these boards but just wanted to say you will be in my prayers. Good luck and I'll watch for your update.

 

[luvmarypoppins]

Just wanted to say my thoughts and prayers are wtih you.

 

[Pea-n-Me]

I think it's great that you're focusing on your family right now. But I know how hard it is to go through something like this.

I preferred to go alone to most of my appointments. But I'm a nurse and am used to being focused in on what a doctor is saying. I kept a notepad for notes and any questions I had, scribbled while we were talking, then before we were done I did my own synopsis to make sure I fully understood everything that was said. It helped that I didn't have to worry about anyone but myself then. (No better time to be "selfish".) But I admit, sometimes the drives home were hard.

There were key times that I wanted my DH there, though, such as when I met with my oncology team to go over the entire plan once my full pathology reports were in so he could hear exactly what they were saying and we'd all be on the same page.

It's personal preference, really. If you think you'll be nervous it might be helpful to have your DH there, that way you can both be on the same page and together ask any questions you may have. (There's no reason why your mother couldn't also go.) I agree with Marsha, tape recorders are good and most doctors wouldn't mind you taping the conversation.

I doubt that you really need to make a list of your symptoms as if he's a specialist in MS I'm sure he's very familar with symptoms most people experience and may not spend a lot of time focusing on that (unless they're bothering you and he'll be making treatment recommendations right away). Additionally, he's probably already read your history and all that entails. Your meeting will probably focus more on what further testing you'll need in order to confirm or "rule out" MS, and if it is MS, what might be expected from that diagnosis.

While there, take the time to see if you like this team: the location, the office itself, the staff, the doc, the NP, etc. See if you like his demeanor and feel comfortable talking with him. Make sure you get all your questions and concerns addressed and be sure you don't feel rushed. See if he's someone you'd feel comfortable calling with questions later and if he shows concern about you. I know that's kind of a tall order, but hey, we can strive for the ideal, right?

Lastly, think about who you might want to lean on for emotional support if you do get a diagnosis of MS. Sometimes the emotional side of something like this is harder to go through than the physical part. If there are support groups in your area, at least clip the information and save it for later if you're not comfortable going right away. I can be really helpful to connect with people going through the same thing. I met some amazing people on my journey who I otherwise wouldn't have met and they helped me a great deal with the emotional side of my illness. I know you have a lot of friends on this board but if there's anything I can ever help you with (not that I know much about MS), or you just need an ear, you know where to find me.

 

[Tinker'n'Fun]

Momma, so sorry I didn't see this sooner... I have been so self-centered. I will be with you with prayers, and please take DH with you. I really hope that you can update us soon. I worry about you. You have my number and I expect you to use it!! Diane.

 

[megthewonderful]

Just wanted to send good wishes for your appointment on Monday afternoon.

 

[minniebeth]

Prayers and thoughts with you, Mommasita!

 

[CarolAnnC]

I think you should bring DH if at all possible. I always bring mine when I have these types of appointments with specialists, and if they are recommending it, well I would bring him.

I will keep you in my thoughts and prayers - I have an old friend back in NH with MS and SIL has it too. Both of them do very well, and I really don't even remember they have this illness most of the time. Does not interfere with their lives for the most part.

So hang in there - it is wonderful what they can do nowadays with some of these illnesses. Hugs to you..

 

[mommasita]

Thank you to each and every one of you

Diane you are NEVER self centered, please do not go there

I will see how it goes after the kids finish school tomorrow, and we shall plan from there. See, if I knew the appt would not be long, that along with the wait of course, I would bring them and have them play their video games in the waiting room, but i am uncertain about that move!!!

I hope you all had a great Sunday!! I did, I just came from family dinner, and my SIL who is now 16 weeks is looking lovely, and feels so much better. I am so excited about this new addition!!!!!!!!

 

[TruBlu]

Was your appointment today? I just stopped in to see if there were any updates on Tom and saw your post.

I don't have any advice or wisdom to share. Please just know that you have many people on the DIS that care about you. PM me any time you need to talk or just vent. I know how it feels to be stuck at home, worried, and not feeling well.
It sounds like you are on the right track with your doctor. Hopefully he will recommend a treatment that will give you some relief.

 

[mommasita]

Well here goes.

I am thoroughly confused after this appt. This new Dr. (neurologist) I did not like one iota. Did not feel comfortable nor was I able to even speak. Every question he asked, I could not finish answering. Grrr I don't like that.

He told me he has results but would not "share" them with me. He does not want to "label" me with MS or any other auto immune disorder (as I have Sjogren's) right now. I ask well what are the results, and he said I am not sharing them, final. He said let me say "hypothetically" they say probable MS, it is never a definite even after finding lesions. That MRI's show every dot of anything in your brain, but what confusing to me now is that I had a SCAN and EMG's, not even a full MRI yet, so what is on this paper Is this hypothetical, what kind of game is this. He told me I was too nervous, and I told him he was intimidating to me! He LOL at that, like really. Of course I am nervous, how could I not be.

He asked if ever had headaches, I told him maybe 5 to 10 a year, and he diagnosed me as having migraines??? Gave me a prescription for migraines as well, but after some research I also see it is used in MS tremors, and hypertension (which I have the opposite of). I told him they were not at that debilitating at all, and I have much bigger issues. I did not fill the prescription just yet. I want to call my GP tomorrow and try to get in with him ASAP.

He also said that if he does diagnose me with MS, I may lose my work insurance, disability, and all that. That just blew me away, I had no idea. And now I am supposed to update my insurance, and am afraid to disclose this possibility, in case that does happen. I need to speak to my Dr. first.

Sorry for the novel here, but I was completely and utterly confused all night.

 

[Tinker'n'Fun]

Momma, I already PM'd you... You are on my mind... PS.. In my mind you are really pretty... The kind of woman I am always jealous of... Hope that brings a smile to your face! Diane.

 

[mommasita]

Momma, I already PM'd you... You are on my mind... PS.. In my mind you are really pretty... The kind of woman I am always jealous of... Hope that brings a smile to your face! Diane.

You are too kind my dear!!1

It did make me smile and giggle like a child. Thanks for it.

P.S. You are wrong though