MS appt./Update/Limbo still!Venting!!!

[tjlmoo]

Thanks Shell,Marell,Alex and Jane for your post's and replies.:)

Well I'm still in Limbo and I will vent if it is okay!

I went to see MS specialist yesterday and it stunk!!!
Dr.Conway is suppose to be the MS specialist at Carolina Medical Ctr in Charlotte NC and I was totally disappointed in the appt. I did not find out anymore than I knew from my neuro at home.

I still have to wait and see. She said there is not enough evidence for MS and that actually she thinks I've listed too many sx's for what mri's show and lesions shape and size and she said she did not want to do a new brain mri since it's not been a year yet!She said my insurance would not pay and I would have to pay out of pocket.???

Forgive me for venting!

I had my Brain MRI= 10 mths ago without contrast only.7 lesions but only 3 of them in question.
The c-spine was 8 mths ago with and w/o= Normal
LP=Clear

When I went in for appt the guy at desk told me to fill out this form and list all/any symptoms I have experience in past and present.SO I did!

Well, Dr Conway said that was too many listed and she was not interested in my timeline of symptoms and that unless I had some that went on longer than a month then she did not believe it's MS related.She also said sx's just don't go away so I guess she just thought I was some freak and thought I made up this stuff.:(  Sorry! I'm irritated!
She actuall said that my abdominal hysterectomy I had in March could be the cause and depression.**!@!!

I felt like I was having to defend myself. She also wanted to know about what my first symptom was so I told her I did not know but that in 2005 I lost vision in my R eye for almost 2 hrs but vision came back and then I seen light flashes and stars then after a bit normal. My eyes were fine until 2009 when everything would get blurry then they would be fine. So finally this year w/to eye doctor and I have R eye pressure and eyes went from 20/20 to 20/25 except when blurry.
Dr Conway was not interested in eye results and said that incident in 2005 could not be MS so beats me!

My other symptoms which are mostly on R side are tingling and numbness in foot leg and arm and some on R side of face. I get tingling chills and sometimes they do go to left side.I have feeling like legs are heavy.and pain in them. I have extreme fatigue especially by afternoon and on.If I walk too long or use too many stairs my legs will shake or tremor esp.R leg.I have bladder issues.Cog fog more than ever and sometimes hard to find words. I have the tightness in chest and torso etc. However there have been some other s but this is most of them.

I had 2 flares since that brain MRI but because the sx's were not continuous for 30 days she was not interested even when one lasted over 3 weeks and I had slurred speech.I could not keep balance I had increased prickly tingly feeling and numbness and had all the other above symptoms. I had even called my GP and she said unless I thought it was a stroke then I need to talk to my neuro about it.

So back to Dr Conway she wants me to work on stress and strength training since I have weakness on R side and she is suggesting that my neuro do HSP testing since I have a brother with Spastic para paresis.
And she said I had hyper reflexes and with that and symptoms I should be tested!

Anyway, that is how it went. I've dealt w/most of these symptoms for over 2 years and I will have to wait until August to get new MRI's.I will not see Dr Jill Conway again!
I've had a couple of good friends suggest that I go see another MS specialist after I have HSP test.
I'm not saying I want MS but I really thought I would have answers and be treated like I had common sense and not just looking for who knows what.

What do you all think?

Again I'm sorry this is long and for the venting.

Thanks and many blessings to All,
Tammy(Limbo)

[LilMinnie]

Hi, tj, don't worry, nothing in your post has discouraged me. Part of the reason I haven't reported my symptoms is because of my own insecurity and a bad experience with my PCP a few years ago. He thinks everything is due to stress, and it took forever for me to get referred to a specialist for my neck. I was finally diagnosed with two degenerating vertebrae, a compressed disc, bone spurs, and calcification of the nerves in my neck. This was in 2007.

Intermittently I had symptoms that at first I thought was related to my neck, but now there are so many symptoms coming at once and now, I believe something else is wrong. I go to pain management and like my doctor there so I am going to tell her what has been going on and see what happens.

My symptoms seem to fit MS, yet I realize they have to check for a lot of other things too. I know that once I mention my symptoms there will be lots of tests and no turning back. I have made it this long, so I will just take it as it comes and hopefully get some answers, MS or not.

I will definitely pray for you and everyone who is seeking answers. For me, I think the not knowing is worse because once I know what is wrong I can deal with it , yet at the same time I have been comfortable with my blissful ignorance.

Hugs and prayers,
Minnie

[tjlmoo]

Tracy,
Thankyou for your replies and good wishes. I too hope to find a good one soon.It is truly a blessing to have a good neuro/MS specialist.
I've got a couple of suggestions already so I'm praying the Lord opens the door for the right one.

Thanks again and I wish for you a blessed day!

Also, Thankyou for coming over to the limbo forum to offer support and advice to all of us.:)
Hugs and blessings,
Tammy:)

[tjlmoo]

Minnie,
Thankyou for the prayers, I do need and appreciate them.
I will be praying for you too!

I hope you get a good neuro doctor or MS specialist that will truly listen to you.  As so many of the wonderful members on the forum have shared their journey's with us and offered hope and advice, please don't let my unfortunate appt cause you to be to nervous or hesitate with being totally honest with the doctors.

Best of wishes on getting your appt soon and I'll be praying you don't have to remain in Limbo too long.:)

Many blessings,
Tammy:)

[tjlmoo]

JJ,
Thankyou for all your info and good advice. I really appreciate it.
This MS forum is so very helpful to those of us in Limbo and knowing that so many of you have been where we are gives us more hope.
I need to be patient and to remember how blessed I am.

I will go ahead and call my local neuro to have the HSP test done as the MS spec. suggested and then in 2 mths have the brain mri with and without contrast this time, but I will ask to be referred to a different MS specialist.

Thankyou again and I pray the Lord will bless you!
Hugs and blessings,
Tammy:)

[Jacksmom516]

Wow -  guess it is like everything there are good specialists and bad ones!  Saw my MS specialist in May - he wanted to hear about every sx when I had them when they started etc... and then he said if something new happens watch it - if it continues for 24 hrs he wants me to call for an appt!  not 30 days - 24 hrs!  

I hope you find someone who listens - its not like this thing is easy to dx and when the Dr doesn't listen makes it all that much harder!

Hugs

Tracy

[HVAC]

I hear good things about Jefferey but then again I heard good things about Conway. People told me to go to Conway.

Alex

[LilMinnie]

Hi, I am new to all of this. I haven't yet told my doctor about my symptoms. I have a lot of the ones that you have. I realize it must be done, yet I am nervous about saving anything because I know something isn't right but I don't want to be treated like it is all in my head. I think more than anything, it is about being taken seriously and a sincere effort being expended to try to determine what is going on, whether it is MS or not. I am so sorry your appointment was so disappointing. I agree, if a doctor isn't concerned about the symptoms that isn't a good sign.

I am sending prayers that you will be able to get some answers soon.

Minnie

[supermum_ms]

Vent if you need, we've all done it from time to time, sometimes its just good to get your frustration out of your head. I'm sorry your upset with the appt, i've got to say though, i think there's possibly some miscommunication happening. I just can't work out why an MS specialist would say you have to have any 'sx continually for 30 days' because thats not inline with general consensous.

Where the 30 days comes from, in relation to RRMS is for relapses, the return of a previously remitted sx and or the worsening of a now everyday sx is not classed as a 'new' relapse if its within a 30 day period. Relapses have no true predicable duration but if the sx is experienced for less than 24hours then its usually not a true relapse but a pseudo. This is why i'm thinking some miscommunication might of happened somewhere.

I have speech issues too, first time was during my big bang of 09, so it was a new sx, I also started walking like a string puppet which was another new sx but i had other sx's that returned right along with these new ones. It took months before it got better, speech went back to normal, walking too (balance still fried) i never ever got back to what i was before, some things just never went away.  Years of back and forward with each new relapse, more often than not those sx's that returned hit worse than i'd ever experienced before, so now those new sx of 09 are my daily norm.

Um sorry i'm not sure if i'd explained it properly, basically if you have multiple sx they are suppose to 'all' return together with or without anything new. lol you probably know all this anyway. Sorry i'm not sure what i was trying to say, lol i've simply lost the plot again. [sigh]

What i'd do, is firstly get my mental health assessed, it will help to have evidence that its not a psychological problem but a physiological problem. I'd also go through any other testing the neuro wants, again its evidence and even if its negative it will still help point towards the direction of what is causing all this.

Hugs.........JJ

ps have you looked into ataxia, it may sound familiar to you, worth looking into imho    

[tjlmoo]

Thankyou Alex!
.
Wow! You are a patient woman.I just hope I can be as patient as you and persevere ahead and keep my sanity too!

I will definitely check into these areas and MS specialists there.
A good friend suggested Dr.Jefferey in Advance/Winston-salem.Have you heard anything about him?

I just really thought I'd get answers but there is a time,place and reason for everything so I guess I just have to wait, be PATIENT and wait my turn and I pray the Lord will continue to give me strength and patience.:)

Many thanks and blessings,
Tammy:)

[HVAC]

I do not know what to say. You would have been disappointed with all the MS Specialists I have seen here in the Triangle. I saw half a dozen in two years. They all thought I had MS except one but no one would call it until I had 12 o-bands on the LP. Now it turns out I get less attention since I was diagnosed in 2009. I see the Neurologist once a year, he reviews my case and sends me on my way. Winston- Salem, Greensboro has good MS Specialists.

Alex

[tjlmoo]

Thankyou Torikat,
I appreciate your reply and words of encouragement!  I'm sorry you've been in Limbo as long as you have. I should not be complaining but grateful but I do want answers so I know what I'm up against and I want to be heard.

I will be lifting your upcoming appt and MRI in prayer.:)
I hope you do get answers. It's about time!
When is your next appt and MRI?

Blessings and many thanks,
Tammy:)

[torikat36]

tammy a doctor that not interested in hearing about symptoms in my book is not worth anymore of my time. I have been in limbo for umm 6 maybe 7 years now I hope you get answers soon but MS is difficult to diagnosis when all the pieces dont fit in the box. I have a repeat mri coming up soon and I hope after that I finally get some answers even though she thinks it is now SPMS and no treatment go figure but its a name and might help with my social security hearing in September. So have the tests and go see another doctor I been to many stooges for before I found the one I have now dont give up you know your body more than anyone and when it doesnt work they way it used to we deserve to find out why