Vibrating Back

It’s been a while since I’ve talked about Multiple Sclerosis.  Part of the reason is things have been going ok.  I’ve been doing the Copaxone injections since early May.  Since I started the injections, I haven’t really had any symptoms/issues.  This changed in late September.

I ended up having some tingly/numbness sensations on the right side of my torso.  I noticed it a few times when I would scratch an itch or something along my rib cage, or just below.  I didn’t think anything off it.  On 10/5 is when this feeling was persistent for the entire day.  Before that, it was on and off and honestly I didn’t really notice it.  The following day, 10/6, that feeling had moved down into my right leg.  Most noticeable in my right foot and lower leg (half way up calf).  I had sent a note to my doctor as it was lasting over 24 hours.  They had prescribed some Steroid pills to try and get the symptoms to subside.  I picked them up, but couldn’t start them until Tuesday morning as it said to take them in the morning and at lunch.  I read the side effects and it mentioned to take them with antacid and could cause heart burn.  On Tuesday when I was taking them though, there was no heart burn.  I didn’t have any side effects.  The issue wasn’t going away though.  The next day, Wednesday (10/8), the symptoms actually got worse.  the feeling had moved into both legs and had general weakness.  I could lift my legs, but they felt like they had a bunch of weight on them.  Also, heart burn had kicked in, and it was probably the worse I had ever felt. 

The symptoms I was having were pretty much gone by late Thursday, and this was the last day on the meds.  The heart burn was unbearable.  I started taking the antacids, but they weren’t really helping.  The following Tuesday, 10/14 was really the first day that I had felt normal again.  The side effects of the meds made that a very miserable time.  Was hard to eat, sleep and really do anything. 

My Back

So, the main symptoms of the September/October episode were gone.  Then I started noticing something very odd.  When I would tilt my head down, with my chin getting closer to my chest, I would notice this vibration down my back.  Pretty much every time I would lower my head.  I thought it may just go away, and showed up after the episode had subsided.  Looking back, it’s possible it was happening during the episode, but with everything else, I just hadn’t noticed it.

Over time, the vibration/sensation has strengthened a bit, but it is more of an annoyance.  There is no pain associated with what I’m feeling.  There have been a few times where I’ve felt it go down into my upper legs in addition to my back.  Out of curiosity, I did a search on Bing to see if I could find information if this was related to MS at all.  I was guessing it was and that it was something neurological.

I found some references to  Lhermitte’s sign.  Reading the description, this is exactly what I was experiencing except for the pain part.

is an electrical sensation that runs down the back and into the limbs. In many patients, it is elicited by bending the head forward. It can also be evoked when a practitioner pounds on the posterior cervical spine while the neck is flexed; this is caused by involvement of the posterior columns.

The sign suggests a lesion of the dorsal columns of the cervical cord or of the caudal medulla. Although often considered a classic finding in multiple sclerosis, it can be caused by a number of conditions, including transverse myelitis, Behçet’s disease, trauma, radiation myelopathy, vitamin B12 deficiency (subacute combined degeneration), and compression of the spinal cord in the neck from any cause such as cervical spondylosis, disc herniation, tumor, and Arnold-Chiari malformation

Needless to say, it is an odd feeling.  Most times I’ll know it is coming.  But occasionally, I will jerk a certain way and it will catch me off guard, or be overly strong. 

I have a checkup with the doctor on November 17th, so I will bring it up then. 

Injection Time

I finally got the syringes for my treatment.  We also got this worked out with Shared Solutions.  That is who Copaxone goes through.

I’m on the 40mg/ml three times a week treatment plan.  We were expecting this to be about $2,000-2,500 for a 30 day supply.  Shared Solutions has a Co-Pay Assist program though that we said we were interested in.  It turns out that that covers the payment of the drug, so we actually didn’t pay anything.  Woot!  That really is awesome!

It comes in a box, and has four stacks of three glass syringes each.  So, four weeks worth.  It has to stay chilled.

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I’m taking it Monday/Wednesday/Friday and last week was my first week.  I didn’t have really any side effects.  Actually I had worse side effects when I was doing my allergy shots.  It was warm for a little bit and then was itchy for a few hours, but then was fine.  With my allergy shots, I had a big bump, was really warm, and itched for a few days. 

I did my left hip last Friday and for that, I think I went too deep.  I went with 6 and for today, I’m going to go with a setting of 4 for my hip.  I think I got into some muscle and I could feel it for about 24 hours.  Wasn’t horrible, but wasn’t comfortable.

On the Copaxone site, they also have a WebTracker.  So I’ve been filling that out as well.

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This is helpful because of the rotation. Not only are there 7 different areas to rotate through (Left & Right arm, Left & Right Hip, Left and Right Thigh and Stomach), but within each area you have to rotate.  For example, today I’m doing my right hip, and there are 6 spots I have to rotate through.

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That’s where tracking becomes helpful.  So, today, I’ll do the upper left spot.  Next time I come around to the right hip, I’ll do the upper left, and then work through the rest over several weeks.  This is to minimize skin damage and potential necrosis. 

The next fun thing will be having to take this with me when I travel.  That will be Disney World in mid-May.  I’m getting a travel kit and already have a letter from the doctor for the syringes.  I’ll blog about that when we get back.

Official Diagnosis

This posting is a little late from when it happened.  I went to UT Southwestern’s MS Clinic on March 26.  This was a much better experience than my other Neurologist.  The doctor I met with talked with me for almost 3 hours. 

We went through the 21 page questionnaire that I filled out, and just talked about things in my past for her to gauge what may or may not be relevant. She then did a physical work up to test strength, nerve reaction using the tuning fork and looked at my eyes.  At the end of it, she looked at the MRI info that I had from when I went to the Hospital last December.  She indicated that the MRI didn’t look really bad, but there was some indication of lesions and items that were a classic sign of Multiple Sclerosis.

Based on our discussion, my description of what has been happening, some items from my past and the MRI, she said she was comfortable giving me an official diagnosis of Multiple Sclerosis and she agreed that based on everything it seemed like the best fit.

We then talked about a treatment plan, and also about general diet and health. I will be starting on Copaxone which will be a self injection 3 times a week.  It used to be daily, but they just recently came out with the dosage to do it less frequently, which I’m in favor of. I already got the Autoject for it.  And I talked to Shared Solutions to give insurance information for the medication itself.  I will hopefully have it within a week or two and get started on that.  Shared Solutions also indicated that they have a program where I may not need to pay for the drug at all, or they will assist, as it is on the costly side.  So, that’s pretty awesome.

I need to do two more MRI’s with contrast.  I need to get those scheduled.  I’ve also been starting to take some Vitamin D supplements along with some other stuff to get more vitamins in me.  The doc indicated that most doctors like the Vitamin D number to come back 40/100.  She said she likes it to be 60/100 for people with MS.  Mine came back at like 26-27.  Also my ANA came back as negative so that’s good.  She indicated she was checking that to see if it may be lupas, although she didn’t think it would be.

All in all, my new Neurologist was way more thorough, and I felt a lot more comfortable.

We will see how the treatment goes and take things a day at a time.

Eye Update and what’s next…

I went to see an Ophthalmologist last week. He had indicated that he did see some items relating to the nerve in the left eye.  Some irritation.  He didn’t get very specific.  He was also hesitant to call it optic neuritis due to the fact that I didn’t have other symptoms that typically go along with it.  Ultimately he wanted to wait to see what happens.  He also recommended that I see a Retina specialist as they have some laser tools that can do more specific imaging that he couldn’t do.  Although he said to do that in 6 weeks or so. 

The pain I was feeling appears to have subsided.  Last Saturday was the last day I recall feeling it.  So, that is good at least.  Still leaves a ? though. 

I also got a call from the MS Clinic at UT Southwestern this morning.  They are going to get me an appointment!  That was pretty quick also.  Only about 2 weeks or so.  It is scheduled for March 26th.  I’m really looking forward to that.  While I’m guessing I’ll still have unanswered questions, I have a more confidence in that center than my current doctors.  From what I’m told I’ll be in better hands regardless.

So, it looks like I have a month before any more real news…

Eye issues and UT Southwestern

Last Wednesday I started having some pain in my left eye.  It has happened in the past one and off, but never lasted more than a few hours.  By Friday it was a constant pain whenever I would move, or rub, my left eye.  Saturday was the same.  I couldn’t do much at that point because my neurologist is only open Mon-Fri.  The pain wasn’t really bad.  Felt more like soreness than anything else.

On Sunday, it felt like it did on Wednesday and Today it really hasn’t surfaced too much. 

I went to the neurologist today because he said to get back to him if something lasted over 24 hours. In all of 5 minutes, he heard what I had to say and then indicated I should just go see an eye doctor.  He mentioned that if it is only pain related it wouldn’t be neurological.  He was interested more in blurriness or lack of vision if it was optic neuritis.  That’s fine. Would have been nice of him to clarify that a week ago.

He had mentioned something about stroke and I reminded him that I had had an MRI in the ER back in December, but that’s all that was done.  He was looking for those reports, and I reminded him I had those reports and when he saw them in conjunction with the MRI he jumped to MS.  I know they made copies, but apparently he didn’t have them.

As I was checking out, he came up indicating to maybe get a CT Scan for something to check blood vessels.  At that point I mentioned that I had been asked why I hadn’t done an MRI with contrast.  He asked if I was sure they didn’t do it with Contrast and I said yes (mainly because I know they didn’t give me any contrast, but also because it was clearly written on the report).  He casually said we could get one.  Almost like an afterthought.

/sigh.  Needless to say I’m not overly happy with this doctor. 

On a different subject, I got the initial questionnaire for UT Southwestern Medical Clinic.  It was 21 pages that I had to fill out.  Took about an hour and was very inclusive.  Covered a whole lot of things that my current neurologist didn’t even touch.  They indicated they had everything from my and would review the items and get back to me.  We’ll see.  I’ve heard it can take a long time to get in and it may not even happen.  For now, I’m just going to wait for that.

The Results… or not…

Last Monday I went back to the doctor to get the results from the Spinal Tap and blood work.  It was a fairly quick consult.  He indicated that the Spinal Fluid looked clean and basically the result is inconclusive as they can’t say what it is.

At that point he started backing off of what he had told me back in December.  After reviewing his notes from the MRI, he indicated that it didn’t like look anything to worry about with that.  Also that my symptoms could be from a lot of different things and could have even just been a migraine without any pain.  Although I’m suspicious of that being that I had lingering symptoms for a month.  Needless to say it left a bad taste in my mouth.  He ended it saying that we would really need to wait for another attack to occur before he would recommend any kind of treatment.  Which, to be fair, if we aren’t sure that it is MS, I would rather not impact my immune system which could lead to other problems and MS not be the issue. So, essentially we don’t know.  It could be MS or it may not be.  We just need to wait. This does kinda jive with several things that I’ve read indicating that typically a diagnosis won’t be made until two recorded attacks have happened.

One comment he made was that if he can’t tell me what it is, that is pretty good news, as opposed to him giving me a firm diagnosis.  I guess, but now I’m back to not knowing what happened and if it will happen again.

A friend at work has a neurologist for a wife.  They had offered to answer questions I may want to bounce off of them.  I typically try to avoid, or at least limit, it unless it was something pretty serious.  My gut was telling me to go get a second opinion, but I was worried that I would go through that just to have them tell me the same thing.  So, I bounced that question off of them. Would it be worth getting a second opinion? 

The answer was yes.  She had recommended getting a second opinion at an academic institution with an MS specialist.

I posted on thisisms.com to see if anyone could recommend someone.  That came back with the UT Southwestern MS Clinic, which is in Dallas.  Another friend at work also suggested the same, and that her husband goes there.  Sounds like a winner to me!  Although a bit of a drive from my house – 32 miles.  But, it sounds like that would be a better diagnosis. 

From what I was told, I’ll probably be put through some more tests.  So, now it is the waiting game again.

The Lumbar Puncture

This is a little late.  I had the Lumbar Puncture last Friday. 

I’ll have to admit, this one had me a little nervous.  Just the idea of someone sticking a needle in my spine got me worked up a bit.  I don’t generally have problems with needles.  I’ve done Allergy shots, have had blood drawn, etc. and have not had problems with that.

When I first got there, they took me into the Infusion room to get some blood drawn.  I’ve see these types of rooms on movies and what not, but this was the first time I saw one in person.  As my blood was being drawn, and older man came in with a walker for an infusion.  Based on the way he was walking, I’m assuming he had MS.  I guess the treatments are given this way.  I haven’t gotten to much into that.

After that, they brought me back into another area where the room was located.  Crystal and the kids came in with me. This was waiting for me in the room.

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The nurse then came in and let us know that the kids couldn’t stay, so Crystal took them to another room.  I had to change into a top piece and these awesome baggy blue shorts.  We didn’t get a pic of that though.  Crystal thought they were nice.

When the doc came in, he looked at the results from the EVOKE test I did the week before.  He just made a quick comment that they looked normal.  So, that’s good I guess.

I had to turn around with my legs going down the side of the bed and my back facing the doctor.  They had a table in front of me that was set up as high as it could go with two pillows on it.  I had to hunch over that.  He wanted me to get the lower part of my back hunched out. 

After putting on the brown/orange liquid stuff, he said he was going to put the numbing agent in.  He said I would feel a pinch and then a little burning. I felt the pinch.  Then he said he had to go in a little deeper.  Boy did I feel that.  Then I felt the burning around my waste and a little up my spin.  It wasn’t overly horrible.  More uncomfortable than anything else.

Then he said he was going to go in with the main needle.  He mentioned that my natural reflex will be to tighten and hunch more.  He said not to do that as it would close the hole and make it hard for him to get it.  When he went in, I really felt it at that point.  It’s very hard to describe.  It was a sharp pain that was like a hand gripping over my sides.  then it subsided.  He mentioned that it was in.  He filled the first vial and showed it to me.  It was a good size tube filed with clear liquid.  This was the spinal fluid.  He filled three of them.  He also indicated that clear is good.  If there was a yellowish tinge to it, that would indicated either meningitis or blood in the spinal cord which is not good. 

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After that he pulled it out and put a bandaid on and then said I could lie down.  He asked if I had any pain meds at home.  I told him I had advil.  He said he’d get me a prescription for something better – vicodin (aka the happy pills). They asked me to stay there for 30 minutes and said to stay hydrated. I went through two water bottles. 

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They later came in and said I could have gotten dressed.  Well, yeah you told me to lay down <g> .  When I got up to get changed, I felt fine.  I had a small headache but I think that was just from laying on the flat bed/board with the two pillows.  They said if I had an LB Migraine that it would really hurt.

We drove home and then I laid on the bed for a few hours after taking a vicodin (just in case).  From about 5 to 8pm or so.  Thank God for Netflix streaming! After that I felt find and just got up to go watch TV with Crystal.  I never had any problems.

The next morning, my lower back felt a little stiff and felt bruised, but other than that, nothing wrong.

They set me up for a follow up appointment on Monday, February 10th (three weeks).  This would be to review the results and discuss what is going on.  So, now I just wait.  Of note, next week I will be going up to Seattle to speak at a conference, so hopefully all will be well with that.

Until next time…