Unfortunately, I'm Back

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Unfortunately, I'm Back

Postby LoveActually » Tue Sep 29, 2009 8:06 pm

Hey ThisIsMS!

I disappeared for a couple of months, mainly because I needed a break from all the test and issues with my crappy neuro. It was a nice couple of months.

Today, I visited an MS Specialist in a highly accredited facility that has rave reviews by all, patients and other physicians. We talked for an hour about all my past tests, symptoms, and what's currently happening in my life. I was SO pleased with him, there are not enough words to express my appreciation for a doctor who actually cares and listens.

He is the first doctor, after 2, who actually viewed my MRI scans. He also viewed all my past test results and a symptoms list that I have created over the year. After all of this, he decided that he wanted to do a Spinal MRI, another EEG, and an Optic Neuritis test.

He said that it is likely that I have MS but that he didn't want to make the diagnosis until viewing the results of these new tests. He's doing the EEG again because he wants to see the results for himself and have his practice perform the test. Luckily, this time it will be completed in the office and I won't have to wear it for 72hrs.

I was fine during the entire appointment but had a little breakdown in the hallway when my husband asked if I was alright. The Doc explained 4 different treatments I could follow. He grouped 3 of them together as sort of working the same way and then mentioned Copaxone on it's own. He said he would give me some information on each so that I could decide on my own. I remember thinking, "I don't need the information, I can just look on ThisIsMS for all I need to know."

I think I'm just posting this so that I can talk to people who understand what's going on. Right now I think I'm probably in some form of denial. I hear, and understand what's going on, but I'm kind of just ignoring it.

I do have one question, do all the treatments of MS, or atleast the Copaxone and other 3 main ones, require you (or me) to give myself the shot? Or in my case, I'll probably make the hubs do it.
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Postby jimmylegs » Wed Sep 30, 2009 12:37 am

hi again LA, glad u found a good doc.

not sure if you're up on the devs wrt CCSVI - u may want to check out that thread which you'll find at the bottom of the main forum list.

also there are oral treatments in the works, which i don't know anything about but ppl like dignan probably can point u in the direction of more info.

so, how are your symptoms these days?
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Postby Bubba » Wed Sep 30, 2009 1:03 am

In my case it wasn't denial, as the neuro was trying to convince me it was. He also said, "why are you in denial, I am very good and have been doing this for over 20 years. I think you are also angry with God, you are thinking, why me?" I just looked at him and imagined what he would look like in handcuffs. After that visit, I never went back to his crazy azz. Now after I was first told that I had MS, I totally acepted it. I just immediately, and I mean immediately started educating myself, via the internet and the library. I also had the CD they made for me of my MRI's. So, thru education, I could look at my MRI's and Lumbar Puncture results and see clearly, that I had MS.
As for the shots, yeppers, your gonna have to self inject; but DO NOT let that bother you. I am on Rebif. I take it three times a week. At first, you start off with small doses and eventually work your way up to the mac daddy. I used the auto-injector at first, because I was so petrified. After I injected with the auto injector the first time, I started a nervous laugh (nurse thought I had lost it) because it was so pain free, and I had myself all worked up; very worked up. However, when I reached the max dose, I started manually injecting, so I could control the rate (speed) of the injection. The auto injector shoved all the medicine at once in, and it left a little lump and stung. Now, when I manually inject, there's no pain and no lump. I was pertified of needles, but I now see, that it's not a big deal at all. It is so easy to do now, that I have actually given myself an injection while sitting in my patrol car while waiting at a red light. Now thats easy!
MS has definately helped me to overcome alot of fears (shots, caths, ect...)
I gave you this long drawn out response, hoping to ease your mind; lord knows you have enough on your mind already. Stop "life" for a minute, and for yourself. Take a deep breath, relax, and take things one at a time as they come to you. Hopefully it's not MS, but if it is, there isn't anything you can do to change it. No amout of worry, is going to help you, as a matter of fact, it will impact you and your life in a negative way.
It's also very important that you have a doctor you like and trust. If it is MS, that will make your journey easier. I am typing this at 4:00am, because I just got home from work, and I am beat down tired. So I apologize ahead of time if there are miss spelled words or bad grammar.
Hope this helps....
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Postby patientx » Wed Sep 30, 2009 6:48 am

LoveActually:

It's been over a year since my diagnosis (longer since it became obvious that I had MS), and I think I'm still in denial.

It's good you found your current neuro, especially since it sounds like he wants to be thorough. Make sure you insist on this. Not telling you to refuse to accept the MS diagnosis; but make sure everything else is ruled out.

If it does come to deciding on a treatment for MS, take the info the doctor offers. A little more information can't hurt. But also check out the forums here; there's a separate one for each treatment, so you can get a good idea of the pros and cons of each drug. And yes, right now the commonly prescribed drugs are injections that you self-administer. Some oral meds have finished their trials and should be coming out soon. On a practical note (and this is getting ahead of things), one of the drugs, Avonex, is a much longer needle because it is injected into the muscle, rather than under the skin. Don't let this fact alone dissuade you from choosing Avonex (the side effects might be another matter). I've been doing both types of injections and I actually prefer the intramuscular (IM) one. If you relax the muscle, it's actually painless, and it's only once-a-week.

Finally, (sorry JL), while it's a good ideas to read up on the CCSVI stuff, since it does hold promise, you probably don't want to base your treatment on it. At least not yet.
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Postby Needled » Wed Sep 30, 2009 7:16 am

Hi LA, Glad you found a doc you like. You had a really bad run at the beginning, let's hope it's turned around for you. As Bubba (who always makes me laugh, as do so many others here -- and that's another excellent med you get at TIMS, free of charge!) said, all of the meds are needles. I don't know what your feeling is about shots, but I'm a certifiable needlephobe. I've also taken Copaxone daily for 3+ years. At the beginning, it was like asking a person who is afraid of heights to jump out of a plane without a parachute EVERY DAY. Now it's more like hopping off the bottom step onto the ground. I'll give it up in a heartbeat, and I watch the drug pipeline religiously and follow all I can about the new the pills. As for the shots, I do 4 days, then my husband does 4 days. Just so we both keep up with it if something happens and one of us can't do it for some reason. But check out the drug pipeline and the forums for each of the CRABs if you're going that route. Good luck!
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Postby whyRwehere » Wed Sep 30, 2009 7:30 am

I can't tell you not to take the CRABs, but I can tell you my husband took Avonex and Copaxone...it was stressful injecting, he felt awful on both of them and neither slowed or stopped his progression. A big waste of money, a big stress, a big disappointment, and who knows what they will do to you in the future. Just bear in mind, that all their studies are geared to make them sound good, and the drugs' aim is to confuse or weaken your immune system, because the makers of them insist MS is an auto-immune disease, although that is not a fact.
Absolutely read the CCSVI forum, if only to get another opinion on the cause of the illness, and then decide whether you want to treat yourself solely as an auto-immune disorder and pray that you are in the 30% of people that the drug might help, and hope you don't suffer from the injections in the future.
Also look at LDN, Diet, Antibiotic forums...hell, look at them all...
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Postby LoveActually » Wed Sep 30, 2009 10:53 am

I'll just respond in order to make things easier. :)

jimmylegs - Most of my symptoms, I ignore or don't realize they are a symptom. For example, the doc asked me yesterday if my legs ever feel weak. I immediately said "No" but then mentioned that sometimes my knees give out and that it seems to happen in clusters. Like over a 2 or 3 day period my knees will give out a few times a day and then it'll go away. And my husband brought up the fact that I am very good a 'finding' walls, chairs, counters and so on. I chalked it up to clumsiness or just not paying attention, but there's the coordination issues that is listed as a known symptom of MS.

There are clear signs like blurred vision that happens many many times a day. And on Sunday, I was driving home from Vegas (didn't win :cry: ) and I lost my peripheral. Then there was a blurry spot floating around that was making signs impossible to read. That lasted only 15 minutes but about 5 minutes after that, my entire left hand went numb. That didn't last too long either and the feeling came back to 4 of my fingers all at the same time and then to my thumb (gradually) a few minutes after that.

So, the symptoms are still there but I think I've just learned to live with most of them. Especially the annoying ringing/buzzing in the ears. Luckily, it's not too loud.

Bubba - I was cracking up at "I just looked at him and imagined what he would look like in handcuffs.'' LMAO! I will try not to give in to the fear of shots. I don't like them, which I don't know why anyone would, but there not my least favorite. Having my blood drawn or an IV is the worst. Eek!! I'm gripping my arms now.

I am definitely happy with this new doc, he even mentioned that he has seen other patients from Dr. T, my former neuro. I guess I had to go through the worst to get to one of the best. Or at least that's how I look at it.

P.S. Your grammar was excellent. But I don't think any of us are english teachers so who cares if it wasn't.

Patientx - He is being very thorough, which I am grateful for. He said if all these tests come back and we're still on the fence, that he may request a spinal tap. But he said if I have lesions on my spine, that that'll pretty much seal the MS diagnosis. Compared with the spots on my brain and my symptoms, he's leaning towards it but wants to be 100% sure before laying down the diagnosis.

Needled - I think I finally understand your forums name. :wink: Thank you for the info. It seems my husband has suddenly turned into a weenie. It seems like he can handle most things but when it comes to giving me shots or seeing me in pain, he goes soft. He'll come around. :D

whyRwehere - I'll definitely take your advice and everyone elses and just look over everything. I know I need to make this decision for myself but I don't know how I feel about being medicated for the rest of my life. Especially if there's a slim chance that I'll actually benefit from it. Maybe there is a good chance, I don't know. I guess if it comes down to it, I'll just need to try them out and see how they affect me.
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Postby jimmylegs » Wed Sep 30, 2009 11:57 am

LA, those don't sound like fun.
can you refresh my memory on your dietary habits and whether you supplement anything?
i had the knees giving way thing, and it was definitely about the B12. which, along with zinc deficiency, has also been linked to tinnitus (the buzzing/ringing).
zinc is also important for vision.
can't stand the numb hands, i got them partially back but i think i have some permanent damage :(
anyway, b12 and zinc look highly suspect from here, if there is any reason you can think of why those could be low and might be worth testing, you may want to mention the idea to your doc.
ttfn!
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Postby LoveActually » Wed Sep 30, 2009 1:51 pm

My B12 was low, 180 if I recall correctly (or 210, I get that and my cholesterol mixed up). I had 4 B12 shots from my previous neuro prior to switching to the new one. Those shots ended about 6 weeks ago. My zinc is normal as far as I know.

My family practice doc put in a request to test my B12 again to see if the shots made much of a difference. I haven't gone in for that yet. I purchased 2500 sublingual B12 pills but was taking too many (2 at a time) and they were making me sick. I stopped taking them while I was getting the shots but I think I need to start again. Maybe 1/2 or 1 a day will be better?

I have a daily vitamin, just a Woman's One-a-Day that I take as well. Once I finish that bottle, I'll try to find a better daily multi vitamin.
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Postby Wendigo » Wed Sep 30, 2009 6:12 pm

I wonder if the visual part could be a form of ocular migraines. I have had these for over five years - hearing it lasts about 15 minutes made me think of this - ocular migraine typically last about 20 minutes. It occurs in the brain, not the eye, no cause is known, treatment, or connection to any other disease.

I have the noise in my head, too. It is hard to describe but is there 24/7 and causes me to always have some kind of running noise on, like a radio, to provide distraction from the noise in my head.
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Postby LoveActually » Wed Sep 30, 2009 10:13 pm

I would describe my humming like a sharp hum, if that makes sense. It's not a high pitched screeching sound but it's not a dull hum either.

I can't remember what he called my issues with the peripheral and the numbness, but it did have something to do with migraines. Ok, just checked with the hubs and he said the doc called it a "complicated migraine". He said those issues may be due to that.

Two of the spots on my brain are comparable to those that you would see with migraines but the third is too large and not something he's seen with just migraines alone. That, paired with my symptoms, and the 24hr+ issue that I had in May, he's leaning towards MS.

I'm just now thinking that the ringing in my ears is probably another one that I really didn't stress the severity of. It's annoying at best but constant. And like most of my other symptoms, it's become my new normal so I don't even think to say anything about it.

Ah well, it'll all come to light on Oct. 29th when we go over these 3 new tests that I have yet to take.
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Postby LoveActually » Mon Oct 12, 2009 4:35 pm

Well I finally received the OK on my referral from our insurance and I've scheduled my MRI's for this Friday, October 16th.

I'm having an MRI of the Cervical Spine w/wo contrast and an MRI of the Thoracic Spine w/wo contrast. I'm definitely much more prepared for this one. I'll ask the radiologist while I'm there if they can email me a copy of the report once it's completed.

My appointment is at 8pm on a Friday so I'm guessing I won't hear anything till Monday or Tuesday. I don't really know what I'm hoping for. Or not hoping for. If there's nothing from this, nothing from the VEP or EEG, then I'm doomed. A lumbar puncture will be ordered.

He needs something to push him off the fence to help deliver a definite diagnosis. Of course, I'd rather get a lumbar puncture then have MS.

We shall see. I'll update once I know more.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Loriyas » Fri Oct 16, 2009 6:13 pm

Hi LA
You are having the MRI probably as I type this, or at least getting ready for it. But after reading your last post I wanted to tell you to ask the MRI center to also make a CD of the MRIs for you to keep. I have always asked for CDs of my MRIs and have needed them in the past. Whenever I go to a different neurologist they ask to see the films or CDs. They like to look at them themselves and not rely on just the written report. If you get this message after you are back from getting the MRI you can call the center next week and have the CDs made for you.

Hope all went well for you!

Lori
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Postby LoveActually » Fri Oct 16, 2009 10:39 pm

Hey Lori,

I am reading your message after the MRI but luckily I received that bit of advice the last time. Once the test was completed, I headed over to the 'film library' and picked up a copy.

My Radiologist Report won't be ready for a few business days and unlike the brain scans, I have no idea what I'm looking for when viewing my spine.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby LoveActually » Sat Oct 17, 2009 3:28 pm

Hello TIMS,

Yesterday was the MRI of the Cervical and Thoracic (sounds like a dinosaur) Spine. It was at a different place then my last MRI because of the Doc change of course. I didn't think it was possible for this MRI to be any louder then the first one but surprise, surprise, this one was.

I went in a 7:30pm with a slight headache. I finished at 9pm with the sound of a fog horn ringing in both ears and a massive headache. She gave me ear phones that were playing classical music but really, what's the point? I heard maybe one song throughout the entire hour and a half.

And I don't know if I've mentioned this but I don't handle IV's or shots very well, or in this case the contrast. For me, it's not the prick or even the feel of the stuff going in that bothers me, it's the thought. I think about a needle hanging out of my arm and....yuck! Anyway, I'm known for passing out.

So the radiologist asks me before I even go in, "How are your veins?" And luckily, they're great. So I tell her that but I also inform her that I don't handle that kind of stuff well and so on. When it came time for the contrast, all was fine until I see what looks like water flying towards my face. I close my eyes and then she quickly asks if I'm alright. "Yes", I say. She then tells me to NOT move my arm no matter what and that she has to go and get some more contrast. Great!

So I'm sitting there, thinking about a needle hanging out of my arm, wondering if I'm bleeding or what's happeneing. Of course I can't see because I have all this padding crap around my head and a metal bridge-looking thing going over my neck. In my mind I'm thinking, "Come on Lady! Hurry it up!" I keep looking at the beautiful (artifical) scenary that's postered on the ceiling panels and trying to think of something else, anything else.

Finally, what felt like 10 minutes but was probably only 2, she came back. She finished up the contrast, taped the "wound", and sent me back in the tomb of (noisy) death. I hate it when I'm in there. I've only done it twice but with both times I've been ready to scream right at the moment before I'm being extracted.

I got a copy of my scans and just need to figure out what I'm looking for. Do lesions on the spine show white like the ones on a brain would? If so, I'm screwed.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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