FINALLY ... got an appt. with MS SPECIALIST!

[Whimpurr]

I am so relieved and praising GOD this morning! I finally got an appointment with a highly recommended MS specialist in Franklin, TN! On top of that, my appointment is just over 2 weeks from now, on February the 5th!

All of of this comes not a moment too soon as I have been experiencing overwhelming weakness! This doctor does all testing right in his office except for MRI ... BUT he is accredited to read MRI's himself with the facility where he has them done ... so he is an expert at reading them himself as well!!!

[Cira]

I'm so happy to hear that you got an appt- especially so quickly! That is fantastic news! I hope your appt goes well & you get some answers.

[Whimpurr]

Cira thank you so much! I hope to be leaving limboland soon one way or the others! I know it may still take time and patience but I am at least optimistic about being with a real doctor this time and one whose main specialty is MS.

[22cyclist]

Good luck at your appointment. Don't forget to go in with a comprehensive list of what all has been going on with you.
1. A list of your exacerbations that have lasted more than 24 hours.
2. Those that come back or new ones that happen at least 1 month apart (must be 1 month apart to be considered a true exacerbation in MS).
3. Any symptom that is left behind after each attack. IE: weakness, numbness in a limb that does not fully recover in between.
4. What if anything makes these exacerbations better/worse.
5. Make the list concise.

Take care and be sure that this is a list you can leave with the MS specialist if they want it.

Lisa

[HETA78]

I've only been officially dx for about month as of today. (Happy one month anniversary to me...). I was a lucky one in that my first major excerbation landed me in the ER on November 8. So between November 8 and December 18 I had a recovery, a relapse, 2 MRI, EPT, Spinal Tap (and blood patch ) and diagnosis. Though I am obviously not happy about an MS dx, I also am thankful it's not a brain tumor or something terminal.

My neurologist is a MS specialist too. I had 2 pages of questions written down for him when I went in for our meeting after my MRI's. It's a good idea to be as prepared as possible. Your neurologist will appreciate it. Also, research DMD's before had so if/when he brings up the topic on this visit, you'll have questions prepared and can start your treatment asap!

Good luck and feel free to contact me if you want to speak with a newly dx person who's going through a lot of the same stuff as you right now! It helps!

[Whimpurr]

Awww, thanks so much for the support and great suggestions. The lady who made my appointment did say to bring all of my medical records or my first appointment would be pretty much a waste. I am wondering how much she meant and how far back and from which doctors?

All I have right now are the results from my two MRIs and that is all. I thought that my GP was not only faxing my referral but also my records.

I do plan to sit down and try to write out a timeline of everything that I can think of that might have some significance from childhood until the present time. Just a bullet list of approximate dates and illnesses or symptoms.

[onlyairfare]

I would think that the MS specialist would want to see your MRI's and the radiologist's reports, as well as any lab work or other testing your primary care has done to evaluate your symptoms, and the PCP's notes from those visits.

The faxed referral may have been just an administrative insurance form required for the specialist to be paid.

[carlab68]

One frustration we had was that I called and made sure they had the MRI and they said they did but when we got there they couldn't find it. We did have to wait 6 months for an appointment. I'd either take them myself or confirm a couple of times they have everything they need before the appt.

[MSer102]

Its best to take a copy of all of your medical record with you including your MRI and lab reports. Its happened to me twice that when I got to a specialist they didn't have my records even tho my doctor sent them. Its a good idea to get your own copy of your medical records anyway just in case.

[Whimpurr]

Today I worked on a detailed list of everything I can remember that might be significant since birth. I already have my own copies (CD's) of my MRIs plus the written reports! I will also call and ask for copies of my other medical records! Want to be prepared!

Thanks everyone!

[lusciousleaves]

My MS doc only wanted abnormal reports. All of my docs just want the abnormal reports. He wasn't much interested in my history, only in observing from our starting point. It's been over 2 years now, and still no answers. If they went on history and symptoms, I've been told it would be dx MS. It's the labs and other tests that don't jive with the dx, yet, so we wait. Good luck.

[Hon-e-bee]

I am glad to see some fellow Tennessee folks on here. I live in upper east Tennessee. And am not sure yet what resources we have here. I am still waiting on dx. before going forward with reaching out in my area. But if you hear of anything up my way. Let me know. I will probably know one way or the other in the next month or so. Good luck to you. I have always heard only good things about Vanderbilt.

[Whimpurr]

I am glad to see some fellow Tennessee folks on here. I live in upper east Tennessee. And am not sure yet what resources we have here. I am still waiting on dx. before going forward with reaching out in my area. But if you hear of anything up my way. Let me know. I will probably know one way or the other in the next month or so. Good luck to you. I have always heard only good things about Vanderbilt.

Hello, fellow Tennessean! I didn't get into the Vanderbilt clinic but I am going to see a highly recommended MS specialist in Franklin, TN. I am so hopeful that he will be very thorough and figure out just what is going on with me! I'm counting days until Feb 5th.

[newbie but goodie]

Congrats! A good neuro is hard to find

My two cents are- ask the MRI people for a disc as well asa report. That way the neuro can see the pics himself. Also bring someone with you. It is amazing how much one can forget in a situation like that!

Let us know how it goes

[Whimpurr]

Congrats! A good neuro is hard to find

My two cents are- ask the MRI people for a disc as well asa report. That way the neuro can see the pics himself. Also bring someone with you. It is amazing how much one can forget in a situation like that!

Let us know how it goes

Yes, I have copies of my MRIs and even found a free online program for my computer so that I can view them but I do not see anything that looks like lesions so not much help for me, lol. But anyway, do have the CDs and written reports to take as well.

Also, my hubby is taking the day off work so he can go with me and be my chauffeur and 2nd pair of ears!