hi...got results

[shel67]

So yep. I have MS. And there are black hole and permanent damage and lesions and no inflammation buy the eyes are okay.  doctor wasn't keen on explaining what areas of damage colorates where on the body. All she did was damage is on the left so that means my right side would be damaged. I'm going to be trying Augabio. Doc said she wanted to stop further attacks on the other areas from worsening. She said what ever symptoms I have are too late for steroids and it may get better or not.

So needless to say my interpretation is. SP.

After a huge breakdown and about 20 panic attacks I took a xanax and calmed down. Tell you what xanax calms my symptoms a bit, anyway I then realized what ever damage I have I can use all my body parts. I think the damage is I'm my right side two last fingers. If it's anywhere else I have use. Whatever it is its minimal in the biggest picture. I can use all my body. It's just not a 100% normal.

So I figure that it's not as bad as I'm making it out...  or maybe it is and its the xanax taking.

Anyway I thought I owed y'all the results since you had to ensure me whining.

Other than taking the med, no idea where to go from here

I hope the med agrees with me and I don't lose too much hair.

[shel67]

Thank you but I knew I had it.

[4happygnomes]

I'm so sorry to hear you received a diagnosis, but thankful that you finally have some answers!  

I hope your symptoms lessen and that you have a good outcome with whatever meds you use going forward!

Karen

[shel67]

Thanks. I'm trying to process all this still. There's so much I don't understand and I'm not sure I want to understand. It's been nothing but bad news. Reading the reviews of tysabri gives me hope. I don't know if the doctors will be willing to put me on that.

[kwarendorf]

Welcome to the club to which you don't want to belonng :-)

I wouldn't be in a rush to put a label on your version of MS. If SPMS gets put down in writing insurance comaapnies may use it to deny DMD coverage. JJ mentioned that DMD's are prescribed for RRMS. That is true.  They are also prescribed for SPMS. When I was diagnosed 3 1/2 years ago my RRMS had already morphed into SPMS. I have been on a DMD ever since, first Tysabri and now Rituxan. I have not had a relapse since. It's hard to tell if that is due to the DMD or the natural course of my SPMS. I don't care :-) I will keep taking my DMD until doc says stop.

In the hierarchy of DMD's the CRAB's come first. They include Copaxone, Rebif, Avonex and Betaseron. They are all injectables and are the first DMD many are prescribed. Next up the ladder are new oral meds like Aubagio, Tecfidera and Gilenya. THey appear to be a bit more powerful than the CRAB's and have the advantage of being in pill form. Moving up you get to Tysabri anf Rituxan. These are "stronger" still and are given by IV infusion. I started on Tysabri. When it quit wrking I switched to Rituxan.

Try not to get crazy about potential side effects. Potential is the key word. I have never had any side effects from either DMD I've received. You may have some side effects, but you may not:-)

You are likely to be inundated with information to process. Take a deep breath. We can help so ask lots of questions.

Kyle

[shel67]

Doctor didn't offer it. I need to know what my options are.

[Artanis12]

Is there a reason you are not considering Tecfidera?  It's oral, and I have found it easy to deal with side-effects wise.

Karen

[shel67]

JJ... I'm okay. I am having breakdowns daily and its unlike anything I have gone through. I handled everything else bad in my life from the death of my mother to my sons diagnosis of autism to my other son's depression but this has got me where I don't know what to do. Like I said if I didn't wake up everyday with these symptoms I could think, rationalize, figure it out but instead I wake up feeling the imbalance, the weird eyes, the hands, leg, vibrations,tightness that for what ever reason won't quit. I think that's what has me in such a frenzy. I fear the worse case scenario because of what Im experiencing now. As long as it don't get worst I guess I can manage. I have a lot to be thankful for. I really don't have pain, my spasticity is not so intense, I don't think I have weakness, my bowls and bladder are okay. I can walk, I wobble a  little but for the most part you wouldn't know unless you looked for it. I can work still, so I need to focus on the positive and not worry about the future.

My new stress is Aubagio. I don't want to take it. The side effects I don't think I can handle. And it doesn't have any feedback. It's too new. So I doing want it but I can't get in touch with the doctor easily to tell her I want something else. I already said no to copaxone cuz of the shot. I want to start a med ASAP to slow this darn disease down but I'm not feeling Aubagio. I want to try Tysabri

I'm mostly afraid of the tingling hands from it. I already have that, I don't need more.

[immisceo]

It depends. What I meant was when I used the term 'heal', I simply meant the damage ceases being active and there remains a scar, and the scar itself can lessen in size over time.

There's a lot of research into what extent the brain actually, truly repairs itself, but to be honest I don't really worry about this. I take my meds, listen to my body, and keep updating my MRIs in case I need to changed medication. I view it as a 'known unknown'.

[shel67]

So can lesions still repair?

[immisceo]

In MS vocabulary, lesion = plaque = scar = sclerosis and similarly
relapse = flair = episode. There's no real hard and fast rules for the use of any of these terms other than the fact that they're roughly interchangeable. When a past lesion, or area of inflammation, ceases being active it can heal to a greater or lesser extent, much like a wound on the outside of our bodies. When the scar heals (not to be confused with 'repairs'), sometimes it does so in a way that there is actually less tissue there than there once was. These can appear as the so-called 'black holes' on MRIs. Just that there's less tissue in a particular spot because of healing patterns.

And your neurologist wasn't just being vague for vagueness's sake. Mapping lesion location to symptom presentation is actually much more tricky than the layman thinks. They can say things in broad strokes like 'that area of the brain may effect speech', and we do know that damage to one side of the brain correlates to symptoms presentation on the opposing side of the body. But it's basically impossible to say 'this lesion located precisely here, in this slide of your MRI is the reason for your right pinky going numb' (just an example). Neuroscience just isn't there yet.

I have to agree with JJ. I didn't see this one coming. A fresh diagnosis is a tough time, but it's also empowering in the sense that you can chose and begin treatment and also deal with other issues and their treatment. As you've read and I've personally shared, many of us have to make it a point to address areas of our mental health. I view it as an adjunct to my MS treatment. Whether or not the MS causes my mental health challenges or just circumstantially brings them more vibrantly to the fore, we really all have to pay extra attention to all aspects of our health in order to give ourselves the best chance of living the happy, fulfilled lives we're capable of.

[anon07072023]

I'm glad that you're not in limboland anymore. Now you know...and you can make plans to take action (like you are with the new med).

[shel67]

Thanks everyone.

I did see a MS specialist and she said my MRIs are very characteristic of MS. They said EP was normal but my sight had gone down so I don't know about that.

What she said was black holes, lesions.

I know black holes are damage but what exactly are lesions?

[HVAC]

I am sorry you got the diagnosis. Now you can do something about it. The first year is a roller coaster of emotions as you accept having MS.

I jumped right into counseling since I was a mess the first year. I found a counselor who deals with chronic illness.

Remember that just because you have MS does not mean you will get every symptom.

Alex

[supermum_ms]

I am genuinely shocked, I so did not see this coming....... HUGS!!!

I truly don't understand with the information you've given, how you could be diagnosed with RRMS, from what you'd previously mentioned, you didn't have any of the typical abnormal neurological clinical signs, you've mentioned the neurologist specifically mentioning sensory before and the ER neuro testing was good so what happened to you the other week was dx as anxiety related.

With your symptoms not being typical for an RRMS causation, and your medical history I honestly didn't see MS hiding behind your anxiety, which can absolutely make anything seem worse than it really is. Anxiety perception is often worse than truth but I am gob smacked that your first round of MRI's have actually came out consistent with MS and that there is enough diagnostic evidence to get you dxed this fast.....I expected your menstrual issues and anxiety to be serious red flags for you finding out what was going on yet.

I honestly have some concerns for your mental health, everything i've said to you, i still think is very important priority wise for your short and long term well being but i'm also concerned that your neurologists way of communicating information to you, maybe in a lot of ways contributing to the amount of anxiety your dealing with.

You actually seem in-ordinarily calm about being diagnosed, which is standing out to how anxious you've been through out this entire process.........are you okay?

Hugs.........JJ

btw: You wouldn't be classified as SPMS, if you've been prescribed the DMD Augabio, DMD's are prescribed for RRMS and it usually takes a year or two of monitoring your MS before SPMS can be determined.........breath!

[karryon55]

I'm sorry to hear of your diagnosis but I guess it is better to know what you're dealing with. I wouldn't be jumping to any conclusion on what kind of MS you have as I was dx in 2013 and my Neuro is still watching my pattern. It is usually assumed that you have RRMS until you have been told otherwise.

I also recommend counselling as this has helped me so much since my dx and enables me to get things out. When I was first dx I was cautious on who I told at first because you will find people can react in strange ways...well in my world they did. My Neuro referred me to my local MS Society immediately where I have found a huge amount of support.

It is a roller coaster for a while especially learning all about "your" MS and what things you can do to help yourself. Things like learning what a Pseudo relapse is versus a true relapse and learning how much stress, heat (in some people not all), fatigue etc can all have an affect on your day to day symptoms.

In regards to Aubagio all I can say is I have previously been on the original called Imuran for about 3 years a while back to treat my RA and I had some immunosuppression problems but this will not be such an issue as Aubagio has been designed to not cause the same issues. It's hard to explain but Imuran was originally used for kidney transplants to then Rheumatoid Arthritis. They found that this was also great for MS so a pharmaceutical company designed a copy drug called Aubagio that did the same thing but didn't leave the recipient with immunosuppression problems.

I have had hair loss but know many who haven't. I have heard it can often settle down in the long run. Also be aware that DMD's are long acting drugs with the aim to hopefully prevent further damage so they take 3 to 6 months to have full effect. In many DMD's you will have some side effects at first but these often subside as time goes by. I am a veteran in DMD's and I know there is often things you can do to help with some of the side effects.

I hope you give yourself a chance to digest all of this and you are feeling a bit more relaxed. It's a lot to take in and probably very overwhelming for you.

Take Care,

Karry.

[Corriel]

Hi there, that's a lot for you to take in at once.

Good for you for trying to focus on the good. You know which parts are suffering from damage and which ones are ok.

My neuro just says I have MS and has yet to classify it after 2 years, that in itself is frustrating and even if yours is SPMS it will be hard to know for sure for a while.

While I am sorry you have your diagnosis, I am glad you know what you are fighting and that you and your neuro will proceed with a plan.

I don't know much about Aubagio so hopefully others will weigh in on that.

There is a lot to go through in the first year after a diagnosis so take care of yourself and know that everything you feel is normal.

If you can, I would strongly suggest counselling to help you through this. The tools provided will be invaluable to you in your MS journey.

Hugs,
Corrie