Question's for the new neuro...any idea's?

[zoefromsussex]

Hi, for those of you who are familiar with my story, I'm just updating that I am seeing a new neuro tomorrow and I wondered if you can think of anything important that I should ask? I'm going to mention how rude the other guy was and I'm going to ask about my mri results and the Lp coz the other neuro wouldn't discuss the results with me (he said he's only really interested in physical symptoms) Also, is a second bout of ON in a different eye and a week of weakness/numbness classed as a relapse (albeit a mild one)? I would think it is because it's new but I don't want to look silly. Thanks, Zoe

[twopack]

Hi Zoe.  I'm sorry you have crash landed into an official MS diagnosis but glad you know what you're dealing with now.  I do hope the regular neuro changes his attitude and approach once he is presented with this new information.  Living with MS is hard enough.  We each ought to be able to have a compassionate doc to work with.

I've been wondering if you ever heard of the book "Awkward B*tch: My Life with MS" by Marlo Donato Parmelee.  The author is American but was diagnosed and treated for her MS in the UK.  She was just about your age at diagnosis I think.  It's been a while since I read it but I remember the account being a colorful and humorous (and extremely honest) narrative told in a story format.  

Hope you don't mind that I recommend it solely based on your shared geographic location.  It's probably lame but we deal with the American medical system the majority of the time on this forum.  I did think you might enjoy a perspective with a homier feel to it?

Give yourself some time to ease into this new phase of life with MS.  Time and again members tell us they are surprised how their reactions and emotions evolve once the diagnosis is made.  Never forget you are Zoe first and foremost!

Mary

[zoefromsussex]

Thanks. We were only in there for 30 mins tops! He checked my eyes out and said its definitely another attack of ON then he said in view of that and my test results, he was diagnosing RRMS. He said the original neuro was just waiting for that second attack to make a dx so now I go back to his clinic on the 31st and he'll put me in touch with an ms nurse and she will discuss dmd's with me. He said something about the severity of my ON attacks and that may influence my choice of drug.
So, all in all I feel relieved but strangely shocked and worried at the same time!

[Dagun]

Zoe, I am glad you finally know for sure, and they are going to help you with some meds. So now you can just focus on doing what is best for you and deal with this in the best way.

My best to you,
Dagun

[zoefromsussex]

Yep, it's a relief to know for sure. Jen, steroids will only won't change the outcome of ON apparently so I'm just waiting for it to clear up by itself. I'm planning to bf Charlie until he's ready to stop. Mais was 23 months so possibly another year or so and the neuro says that wiill be fine.

[SarahL2491]

glad you finally have some answers!  That in itself brings some peace of mind.  It empowers you in a way.

[jenphilly]

Zoe -

Well glad at least you have an answer and direction for moving forward...  Know there is some feeling of validation to know what is and what you can do....

How much longer were you thinking of breastfeeding Charlie?   Did they give you anything to help with the eye issues?   Tho, it would be steroids and guess that's not possible with Charlie..?  

Hope you're feeling a little better every day....

Jen    

[zoefromsussex]

Hi all, just a little update. I've just got back from the neuro and he has diagnosed RRMS. He is going to let my usual neuro know and they will put me in touch with an MS nurse to discuss dmd's. So that's it; I feel relieved to know and less like I'm just going crazy! I'm planning to start copaxone as soon as I've finished breastfeeding my son.

[zoefromsussex]

Thanks Jen, you know how it is though. With some disease's you would expect to feel 'ill' but with early MS it's all so vague and of course everbody experuences such different symptoms. My main thing is my eyes. I've resigned myself to not getting perfect vision back. I went totally blind in the right eye for around three weeks and then it started returning but would come & go and now it's pretty much back apart from when I overexert myself or am coming down with something as then it totally fogs over. It hasn't been as dramatic with this left eye but it's still disorientating! The other thing I get is tingling hands & feet, numb/weakness in my right arm and my legs often feel odd, like a sort of weak and shaky feeling. I get other more transient stuff like burning lips, a patch of numbness on my right cheek and my balance is a bit off I suppose. None of it is severe though apart from the eyesight so perhaps it is more a CIS.
I love your comment about the shots being easier than changing Charlie's nappies...I swear he is the hardest baby to change ever! He hates it! I think daily shots are easier to get into a routine with than say every other day as I could just build it into my daily routine, you know?
Anyway, I'm rambling here so I guess I'll stop! I'll reply to your email instead!
Hope you're feeling well today x

[jenphilly]

Postive thinking :)  

I never felt sick...  still don't.  The muscle spams, numbness / tingling, electric buzz kinda sensation and fatigue are my ongoing ills...  Otherwise feel healthy :)   boy does that sound weird in a way :)

The burning fingers...  I get the tight, stiff and sometimes buzzy feeling in my hands...  more leaning towards numbness / tingling then burning...  my feet have had the burning sensation since the cold set in.  

Don't let anyone make you feel like a hyprochondriac or fraud...  like you're making up barely being able to see????   Its not in your head, well not in an imagined kind of way!  

Copax is a good first choice...  you made the decision for much of why I chose copax, but maybe that's why I think its a good first choice :)   I did not like the flu like side effects and the worry of liver was a major factor for us too....   and the shots really are not bad, bit of sting from the med after the shot, but the actual needle / shot is nothing...  you've given birth twice, the daily copax routine will be easier and quicker then changing Charlie's diapers :)

Good luck and will hope for your new neuro to be a much better doc then the first weenie was...

Hugs,

Jen

[zoefromsussex]

Thanks Jen.
If I get a diagnosis tomorrow then I think I already know which dmd is my first choice: Copaxone. Basically because it doesn't seem to cause flu symptoms and liver damage doesn't seem as common (my greatest fear after watching dad dying of liver failure due to immune supressive drugs) I don't think he will dx me tomorrow though. I'm pretty certain I'll get the same talk about CIS! I think part of me still can't quite believe I could have MS as I don't feel ill or anything, just super tired and of course I have virtually no eyesight and spells of strange sensations (speaking of which, the latest is burning fingers which is very strange) If anything, I feel a bit of a hyperchondriac or fraud! I can't wait to let you know what happens tomorrow because I'm convinced it'll be a big waste of time

[jenphilly]

Zoe -

When MS first was put on the table for me and I did all the reading, I understand your hesitation...  swear the DMDs scared me more then the MS!  

But there are options and I took the logic of starting with the lesser of the evils.  My neuro agreed with my choice of first med and so far, outside of injection lumps that go away after several days, I've seen absolutely no reactions.  So, there is a chance one of the meds will work well with your system and not cause any problems!  

At first I thought I would not start a DMD, but then I had 2 flares within 4 months, so kinda changed my mind :)   Well, you know my story....  wish I would have been given option of starting DMD sooner and avoided the last flare, the left arm / hand has been a daily problem.  

I am hoping your new neuro is much more worried about the patient instead of the cost :)

Hugs,

Jen    

[zoefromsussex]

Not all neurologists in the UK seem to agree with or follow those guidelines. When I was referred to St George's in the first place, the neuro said he would like to see people treated early but my own neuro doesn't follow that train of thought, probably due to the expense of the drugs (as the NHS covers the cost of drugs here) I have lesions (mostly in the corpus collosum) and I have o banding in my spinal fluid. I also have abnormal reflexes and now I've got ON again. I'm sure that can't be considered CIS, can it?! On the other hand, I am quite scared of an MS diagnosis and the dmd's. I don't really want to take the drugs unless its absolutely neccesssary, you know?

[sllowe]

Dang twas in front of my face the whole time.

Here you go! http://www.theabn.org/abn/userfiles/file/ABN_MS_Guidelines_2009_Final(1).pdf

Look at what page "3" states

"Neurologists may, in certain other circumstances where the evidence for efficacy is less secure, also consider advising treatment after discussion with the patient concerning the risks and benefits. For example;

(i) patients within 12 months of a clinically significant clinically isolated syndrome when MRI
evidence predicts a high likelihood of recurrent episodes (i.e. development of multiple sclerosis)."

Z -
Not putting this up for you to put your thumb on the docs - just want you to be as informed as you can be. I'd not be surprised is this new neuro dx's you and forges a plan to get you on a disease modifier.

Good luck. Stay positive, and leave that old appt. behind you. Your test results will speak volumes to a good doc :)

[sllowe]

Zoe - they can treat you if you in the UK if fit their criteria. I can't find the original link I posted once for you, but this one will give you an idea of what I mentioning.

http://www.nice.org.uk/media/8A8/EC/ClinicallyIsolatedSyndromeSingleDemyelinatingEventInterferonBeta1bInterferonBeta1AAndGlatiramerAcetateDraftScope.pdf

Specifically:
"When the CIS is accompanied by MRI-detected brain lesions that are similar to those seen in multiple sclerosis (MS), the person is considered to be at a high risk of experiencing a second demyelinating event within several years, thereby meeting the criteria for a diagnosis of clinically definite MS. When the CIS is not accompanied by MRI-detected lesions, the person has a lower risk of developing MS over the same time period."

Also, what I'm looking for is the link for the 2009 ABN prescribing guidelines because I know it said treatment may be considered (criteria is in those guidelines).

-shell

[zoefromsussex]

Nope I'm not. I had ON in my right eye in Oct and wasn't treated then either, just given Mri and LP (both abnormal) I've told the 'old' neuro that it's happened again in my left eye this time and he's gonna see me on the 31st but he just said to get steroids from my doc's surgery if I want them. Did you mean steroids or dmd's? We're not given dmd's in the UK for a CIS. They're only prescribed for MS

[SarahL2491]

are you being treated for the ON?  That is important if you are not.  Just checking on ya!

[zoefromsussex]

Thanks. I wouldn't usually talk badly of somebody but this particlar neuro was so rude it annoyed me! I mainly want to know how I can be considered to have CIS if I've now got ON in the other eye. To me that would suggest something new especially when combined with the other positive resulrs. Guess I'll find out tomorrow soon enough!

[SarahL2491]

yeah, Kyle is right, don't bash his buddies.  When I went, I refused to give the names and said "idiots" and smiled.  After he looked at all of my stuff, with names blacked out, and had given my my Dx (ha) he insisted on knowing who they were and I felt comfortable with that.  When I got to the biggest idiot, he smiled, and I said "oh you know HIM" and he said "yeah" and grinned.  But it was ok at that point.  I said nothing that couldn't be backed up in the other doctor's dictation, if I wanted to pull it out of my file!  Fortunately I have a good relationship with my new neuro, I made it very plain right up front when I wrote for an appointment that I would not tolerate any "I don't know", "you women" and "lets wait and see".

[sllowe]

Hi Zoe,

I 2nd Kyle's good advice. Stick to the facts, you very much need your current status documented. You have a positive LP, among other tests so let this doctor dig into your history, ask you questions, review your test results, and make a determination without interference of past shortcomings.

Do they give you hard copies of these test results in the UK? Or, do they transfer them from doc to doc?

Wishing you a good appointment, one where you don't have to think to ask a thing. Only thing I would stick to is if CIS is mentioned, please ask about early treatment. It's well documented that disease modifiers work best early.

-shell

[kwarendorf]

Hi Zoe-

I'm not sure I would spend any time discussing the other neuro. The new guy may be disinclined to discuss a "colleague". It will also take away from the time you have to talk about what is going on today.

If the new guy has the MRI and LP results, I would definitely ask him to discuss them with you. I would most certainly tell him of any new sx. For me, it wouldn't be important to get a relapse label for the new sx, but rather just address them.

Just one man's opinion :-)

Good luck with your appointment.

Kyle