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Old 10-01-2011, 02:32 PM   #1
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First visit with MS Specialist - really good/bad

Hello all. I went to my appointment yesterday with MS specialist for a second opinion. So, i will start with the really good. First, i really liked him - he was really nice and, more importantly, i felt much more confidence in his opinion than that of the regular neuro I was seeing. My husband was equally impressed and i have decided to make him my doctor who i will see regularly. I pretty much knew before going in that as long as i liked him i was going to switch. So it's official. I have my next regular appt in 3 months and made the appt while I was there.

Now on to the really bad....
First, the neuro i was seeing told me i had 3 lesions - 1 consistent lesion and 2 old and inconsistent lesions. The MS specialist told me there are 3, possibly 4 lesions, and he would never say certain ones are inconsistent and he has never heard of that. He said they are all ms related. He said the 4th one is so small it could be a blood vessel but he would need a better image. He actually thought there was a 5th but then when he saw a better picture (i brought a cd with my mri images from my diagnosis - 5/11) he said that was a blood vessel.
Next, he disagreed that i should be on the 22mcg of Rebif and wants me to go up to the 44mcg. I just got a 3 mo supply delivered so he said i will switch to the 44mcg when i refill. Not looking forward to full dose and i wonder how the side effects will be since i will have been on rebif for 6 mos. I'll post an update when the time comes.
I raised to him the issue that the mri was not done on my spine and he agreed that this should be done at baseline. So i will be having the mri of the spine done at their center. They also took my blood to test my blood count and liver enzymes since they were elevated at last test.

He did agree that the diagnosis is possible ms since i do not meet the criteria - yet.

I wasn't expecting to get any negative news yesterday so i just feel really upset about it. I think i knew all along that once i went to this dr it would be official so thats why i put it off for so long.

Anyway, i'm really glad i went and i feel really happy with my choice of dr. I feel much more comfortable with an ms specialist than with the regular neuro.

I hope everyone is enjoying the nice cool weather of the fall.

 
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Old 10-01-2011, 03:27 PM   #2
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Re: First visit with MS Specialist - really good/bad

Sorry to hear about your news, but you need not be upset. You are getting to a resolution albeit one of MS. I think it is great that your husband could be there with you. Your neuro seems to be on point. You are in great shape to have another appointment in only 3 months.

Now is the time to embrace your MS and establish your new normalcy. You need not be upset, after all, you are among friends. Stay strong and keep us updated.
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Old 10-01-2011, 05:29 PM   #3
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Re: First visit with MS Specialist - really good/bad

Hey Kingbaxter.

Im really happy to hear you liked your MS specailist...thats SO important. Sounds like he is truly qualified to direct you in this journey.

As for the increase in the Rebif- I have to tell you, Im glad to hear he did that. Even Serano will tell you that statistically, all the clinical trials were based on 44 mcg, and not 22. And, the 22 mcgs have proven over the years to not be enough interferon to control relapses....its in the pharmacology they supply....it was originally meant to only be used for titration, and the docs who are using it full time, are doing so because the patients are experincing a hard time titrating...usually. In your case, it sounds like he was just being cautious...but caution isnt why you are injecting yourself- your doing it to prevent progression. Go for the full dose.

You probably wont have any real side effects now that youve been on 22 mcgs for so long- and if you do, they wil be short lived. I experinced side effects ONLY on shot nights, and only for 2-3 months and then WHAM! They stopped entirely, never to return.....even the most recent problems I was having, didnt involve flu like symptoms, but severe site reactions instead.....if you have those, go to the doctor immediately.

Youre going to be fine. The bright side is you have someone you can trust and like- thats SO Important with this disease...

Take care!!
Nikki
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Old 10-02-2011, 09:11 AM   #4
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Re: First visit with MS Specialist - really good/bad

Thank you both for your responses and support. I kinda knew he was going to recommend going up to the 44 mcg of rebif, i just wasnt expecting him to see more lesions and to tell me that they were all ms related. Now i will know better on that stuff going forward. At least when i get the results of the spine mri i know that there is the possibility that i can get negative info. On friday i was just thrown a little bit because i wasn't expecting that.
My husband made me promise not to cry while we were there and i held it together really well until he started talking about the lesions. I'm super emotional - a commercial can bring me to tears!

Nikki - is the 44 mcg just double the size of the 22? Just literally double the amount of "juice" as i call it. To me the worst part of injecting is having that liquid going in...besides the sting i just hate that i am putting a foreign substance in my body.

It felt so different going to an MS clinic and seeing an ms specialist rather than the regular neuro. Even just walking in my husband even said how different it was. The staff was so welcoming and kind. Not that they weren't at the regular neuro, but it was just different. I feel like i am in the right place for this. After seeing the neuro i did question his opinions, and now, i am completely confident that i have gotten the correct opinions.

Thank you both again so much. I truly value the support i have received on here.

 
Old 10-02-2011, 11:08 AM   #5
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Re: First visit with MS Specialist - really good/bad

I enjoy going to the MS Clinic because I can chat with many MSers, both older and younger. I would certainly agree that a regular neuro deals with you differently, at least for me. I too enjoy the staff and they always look forward to seeing my service dog.

I think that your MS neuro was seeing things that experienced eyes can tell. Stay strong and keep moving forward one day at a time.
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Old 10-02-2011, 01:04 PM   #6
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Re: First visit with MS Specialist - really good/bad

Hi King-
Yes, the amount of Juice in the syringe is double the amount in the 22 mcg...the needle is exactly the same, just has more liquid (interferon) in it. It probably wont burn any worse than you are already used to...and of course you know, that massaging it immediately, to dissipate the liquid under the skin, will make it stop.....but unfortunately, yes, you are adding double the foreign substance into your body..

This is one of those decisions that you will have to make. If you continue on traditional DMD therapy, there is no choice. Even Tysabri, is injected into a vein, and is really truly some serious stuff ...with even more serious side effects. Gilenyia, the new oral, is similar to Rebif, in an oral form. Obviously Avonex is identical- and BetaSeron is pretty close. Rebif is the strongest of all the injectables...

The lesions that your new doctor picked up on....thats because he is a specailist. He knows what to look for, placement and size...and hopefully is reading his own reports. When you have a Neuro who relies on a radiologist to determine what he is looking at, RUN! A good MS doc, be it a regular Neuro or a MS Specailist, should ALWAYS be able to read a MRI....

Youre going to get thru this...one step at a time. Its not going to be nearly as traumatic as you are thinking it will be....chances are, absolutely nothing will change in your life, except you wil be preventing more lesions/ attacks/ relapses!

You can always join me in the LDN route. 8 days in and I feel pretty dang good! I even slept the last two nights!
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Old 10-02-2011, 03:00 PM   #7
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Re: First visit with MS Specialist - really good/bad

Yep, the ms specialist was viewing the images himself. He did read the report from the hospital radiologist first as the cd was loading on his computer. Even when he enlarged each image, he said he would prefer to have the actual films that he can can view up on that light thing (dont know what its called). If i had known that, i would have paid the $7 per image - there were at least 20 though so i though the cd w/ everything for $10 would be okay.

I wish you continued success on the LDN Nikki! I hope one day i will also be able to stop injecting this crazy stuff and take something i'm more comfortable with.

 
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Old 10-04-2011, 05:09 AM   #8
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Re: First visit with MS Specialist - really good/bad

Hey King I'm So Happy That You Found A Specialist that makes you feel comfortable. That is so important. I read all of these experiences and I just feel like I'm totally blessed. For me, I just started falling one day. At first I just thought it was my equilibrium due to my migraines (and I'm Hard headed) anyway I waited to call my Neuro, 6 days waited. He told me to go to the ER. I went later that evening, they did a CT admitted me. I mean then the tests just started rolling in. MRI's , Heart echo's , I thought I would run out of blood. They literally checked everything including the spinal tap. The very last procedure was open head surgery, they did a brain biopsy. Ran some tests here then sent the other samples to Johns Hopkins. I was released a couple of days later with a follow up at my Neuro. But my Neuro's office is Spine and Brain Institute so my Neuro gave me the diagnosis and immediatly brought me over to another office to the MS Specialist. I mean really I am happy for you. I don't know if I would've handled mine as well if it was handled they way yours was. You may cry for a commercial but your strong, you've got this. Don't worry.
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Old 10-04-2011, 12:49 PM   #9
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Re: First visit with MS Specialist - really good/bad

KingBaxter;
I guess I don't understand why you were/are taking MS meds when the neuro said it was 'possible MS' and you don't meet the criteria - yet? Who gave you these meds before you even have a positive diagnosis?

I don't mean to sound rude, forgive me if that sounded that way.

I'm just frustrated because I have 20 lesions on my brain and the neuro isn't gonna do any further testing for ms unless the next mri (in 8 months) shows more lesions. She is ordering a ct angiogram to look at the blood vessels in my head to look for/rule out mini-strokes. I'm still positive in my head, that if I had 20 mini-strokes that me or someone else would have known it, or I'd be dead. I'm just having a bad day.

I hope that whatever your ending diagnosis is that you are blessed with many years of good health and happiness.

 
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Old 10-04-2011, 01:52 PM   #10
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Re: First visit with MS Specialist - really good/bad

Kenzibenzi,
forgive my input. Time to find a new Neurologist. If you are having that many issues and have 20 lesions and your doctor isnt putting you on a DMD, there is something wrong with the doctor. Either he or she is all caught up in the idea of mini-strokes, or he or she is ignorant to the ways in which MS present.

Id get another opinion.

As for anyone being put on a DMD before they are offically diagnosed. Now, when you have many of the symtoms but not enough radiographical presentation to 100% dx MS, alot of docs DO put people on DMDs, even with CIS, clinically isolated syndrome (which is only one presentation of MS) they start DMDs early.
ITs insurance...and better safe than sorry. If taking a DMD can prevent anything else from going wrong- its a good idea to do so.
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Old 10-04-2011, 02:03 PM   #11
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Re: First visit with MS Specialist - really good/bad

MSNik;
I agree with you and thanks! The neuro is from MSU (michigan state university). They have a group of neurologists there who specialize in MS, alzheimers. parkinsons, cognitive disorders and something else. I can only see who volunteers at the clinic I go to, and she is the one who specializes in alzheimers (I found out) so I am probably screwed if whatever I have doesn't fall into her specialty, unless an ms specialist happens to volunteer. Oh well, at least I will find out if I've had 20 mini-strokes...lol I never turn down a free test, even if it takes 2 months to get it!

 
Old 10-04-2011, 06:14 PM   #12
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Re: First visit with MS Specialist - really good/bad

Hi kenzibenzi - i completely understand your question. At first, i also questioned why i would be injecting myself with medication when its possible ms. Based on the CIS that i had - optic neuritis plus the lesions on my brain (which i now learned i have 4), it is AT LEAST 85% chance (or more) that i will become CDMS. My new ms specialist explained to me that it is commonly known in the neuro community that a possible ms diagnosis that becomes CDMS, just really means that it was mild at first and it was caught really early on. So really, once it becomes CDMS, you know you had MS all along....I know i didnt explain that as well as he did!! It made much more sense when he explained that to me...

As for starting meds this early, it is common to be put on a DMD early on. Like MS Nik said, better safe than sorry. Of course that's my personal opinion. Also, i have seen a lot of info which provides that early treatment can be more effective. I hope so!

I'm very new to this and certainly no expert, but with 20 lesions i hope you can find the right doctor and get another opinion and a resolution. Good luck to you.

 
Old 10-04-2011, 07:15 PM   #13
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Re: First visit with MS Specialist - really good/bad

Unfortunately, I'm not in a situation to get a second opinion or go to a different neuro. I go to a clinic for uninsured people. All the dr's there volunteer their time, so I have to take what is available at the clinic. Otherwise, I would have already gotten a second opinion. I just keep telling myself that it will all come out in time.

I'm glad you have a neuro who is attentive and treating you well. And I think I'm beginning to understand the "treating before things get worse" theory (common sense).

I've never even had any symptoms of a stroke, so I too am confused as to why she jumped on that theory. The MRI was originally ordered because I complained of headaches, blurry vision and my legs being weak at times. Maybe I think about it too much.

I don't get on a computer very often, but will keep watching your posts for updates as often as I can. I wish you the very best! I will update on my situation when things become available. Have a great night!

 
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