New to board - first relapse

[starfish1]

Hi everyone -- I am new to this board. I will be 40 at the end of the month and I was diagnosed in 2012. I am currently 6 weeks into my first relapse since I was diagnosed, so this is all new to me. It started the first week of February with numbness and tingling on my left side, from head to toe. My dr put me on a 3-day IV SoluMedrol. It took a week or two but the numbness and tingling went finally away. I thought the relapse was over. I went back to running and resumed all normal activity. I had one great week and then it came back with a vengeance. I am completely numb and tingling from the waist up on both sides now. My dr switched me from Avonex to Tecfidera. She also put me on Gabapentin. I started both of those last week (took forever with insurance company). I seem to be losing more and more control every day. This morning I woke up and can barely use my left hand at all. It takes so much effort to move my arm and fingers. Personal care is hard. I have a desk job and it is really affecting my performance. I also have two young children and I don't want them to know what's going on, but it's getting harder and harder to hide it. I keep dropping things, can't hold anything, and keep stumbling into walls. I'm starting another 3-day SoluMedrol next week and I also started OT yesterday.

I am completely terrified. I know MS affects everyone differently, but has anyone had a relapse like this? I don't know if progressive worsening is normal for a relapse. I am a really independent person and I hate to ask for help. I don't want to be a burden on my family, but my ability to do things on my own right now is being taken away day by day.

[Scott1]

Hi,

The SoluMedrol is prednisolone so it should kick in. The Gabapentin is for epileptic style seizures. It might help. Are you worse or better on the Tecfedira? It's not for everyone. Speak up if you think it's not helping. (I'm not a fan of it).

When you say it takes a big effort to move your arm is that because it feels heavy or stiff? They are different sensations.
How does your toso feel and how are your legs?
I think you will eventually calm the inflammatory side down with the Solumedrol but then you need a strategy after that. Here's my take for what it's worth - http://www.thisisms.com/forum/regimens- ... 24019.html

I think you should focus on restoring energy first as that will make the rest easier. Happy to answer questions if it helps you.

Regards,

[starfish1]

Thanks for the reply... I really appreciate it. Torso and legs feel good. I have an on and off mild tingle in my toes, but it's not bad. My arms feel really heavy, like I'm holding 20 lb weights. I also have some stiffness, my movements are really jerky. I forgot to mention that I had no new lesions on my MRIs the past 4 years, but new MRIs taken in February (after relapse started) showed 2 new lesions on my brain (large one on left, smaller one on right).

[Scott1]

Hi,

Ok, that's not too bad.

That feeling in your arms like you are made of wet cement is all about energy. Basically you're not making much. A quick and dirty fix is to start taking coenzyme Q10 and aceytl-l-carnitine. You can get both from a chemist or good health food shop. It will help.
With the Q10 start at 150mg a night and increase it by 150mg every second night till you get to 600mg. Stop there for a while and see how it goes. The aceytl-l-carnitine aids the transfer of the driver of energy, ATP, from the mitochondria back into the cytoplasm of the cell. You will need both supplements. Don't buy cheap stuff. Ask for the best they have behind the counter.
My preference would be you take a Valacyclovir tablet morning and night as I am sure you will have the signatures of an EBV infection. (see my note in the earlier link). That will need your doctors assistance and that can take some doing so again look at my note. That will also help with energy. (see note)
Is the jerky movement just in the legs (or one leg predominately)? Either way, when you get out of the hospital bed get booked into some rehab to look at unlocking the muscles before they get too stiff. That might mean a lot of specific exercise focused on the calf but keep reminding them to do Thomas stretches to free up your hip flexor and psoas. Rehab only goes a little bit of the way. A good pilates instructor in a small class will be more valuable. Once you start on rehab ask for botox in the calf and hamstring. That will unlock the muscle and give you a chance to stretch so a normal action can be restored.
If the stiffness is in your back then you need to exercise to pull it out. Again a pilates class will help.
Also don't be afraid of getting a lot of massage. You will need either pressure point, proper Thai style stretching or massage like myotherapy. Forget the relaxing massage, you will be working.
While you are getting looked at see if your doctor will check you for any possible bacterial infections. They can be sources of inflammation and that is what you want to avoid. They don't have to be obviously affecting you. Look for mycoplasma and chlamydias in particular.
I would also suggest a really good probiotic every day, plenty of fresh fruit, dark green leafy vegetables and beets in particular. No wacko diets required but be very careful about gluten dairy and pulses as they are inflammatory.
I think you sound not too bad although you probably are really worried.

I tried Tecfedira very briefly and it really didn't agree with me at all. I could barely stand up, I felt so ordinary.

Hope you feel better soon. I'm sure others will make suggestions soon.

Regards,

[starfish1]

Thank you again! The stiffness and weakness are in my arms. Legs are okay, except for the balance issues. The loss of use of my hands and arms is really scary and so very debilitating, especially since it is significantly worse each day. I find it interesting that my neuro hasn't recommended any supplements besides 50,000 units of VitD2 once a week. I will definitely pick up the CoQ10, acetyl-l-carnitine, and a probiotic.

[lyndacarol]

Welcome to ThisIsMS, starfish1.

Scott1 is correct when he says, "I'm sure others will make suggestions soon." I am just one of those.

Having a desk job (mentioned in your first post), you have the lifestyle of most people today (I assume) – that is, you do not have regular exposure to sunshine between 10 AM and 3 PM. I assume that your neuro ordered the vitamin D test (a.k.a. 25-hydroxyvitamin D test) and found your level was low (Will you share your actual test result number?), since she prescribed "50,000 units of vitamin D2 once a week."

Your neuro was wise to test your vitamin D level: over 1/2 of the world's population is vitamin D deficient. Neurological symptoms, such as yours, can stem from vitamin D deficiency. You will find interesting information at http://www.GrassrootsHealth.net as well as here at ThisIsMS.

I trust that your neuro continues to monitor your vitamin D level (The test is relatively inexpensive at about $50.).

You were diagnosed with MS in 2012. Of course, new symptoms are not all necessarily due to MS.

[Scott1]

Hi,

If you have balance issues then you do need to watch the legs. In particular the exercises are needed for the hips, hamstrings and up into the psoas. A physio is likely to miss them and go for the obvious. Pilates is better.
With the arms you need to ensure your scapulas are free. Massage helps with that and they need to do this - probably quite often.
Some arm sensation can come from demylination but a great deal comes from just being locked up. Even if you don't feel it yet, do address it.

Regards,

[starfish1]

This is great to know... I wish I had found this site earlier. I had a shoulder surgery in November that has never healed. I've been in PT for it, but I still can't lift my arm more than 45 degrees in any direction. It's tight and very painful. Wondering if that is adding to the loss of sensation in that arm.

[Scott1]

Hi,

Yes it will. That sounds like adhesive capulitis. In an ordinary situation they say say treat conservatively and wait at least 2 years.

What you need to do is get a referral from a sports medicine doctor for an ultrasound to confirm the diagnosis and have it treated using hydrodilation. Basically the joint has lost fluid so the gaps in the shoulder have closed up. That leads to inflammation and the tendons thicken as adhesions develop.
They will inject about 35ml of a mixture of water and cortisone in the gap. It doesn't hurt but you will feel it stretch.
The normal person then just waits and normal use returns.
What I do is go, about four days later, to a good shiatsu style masseur who uses his thumbs and fingers to break up the adhesions just by rubbing along the tight bits around the ball of the shoulder. That can be a bit tender but if he does it well you won't even get a bruise and it will feel looser immediately. Then I start using it like a normal person would.
For me, it's so nice to be able to lie on my side when sleeping.
There are three big nerves running down your arm, the median, radial and ulnar nerve. They start as a diffuse arrangement on your back somewhere near the spot between your shoulder blades. They gather into bunches under the shoulder blade, divide and sweep down from the ball of the shoulder and twist around the arm ultimately terminating in the fingers. If your shoulder joint is tight, then your muscles around the scapula will be tight to protect the joint. This creates pressure which impinges the nerve. It can be made worse if your shoulders roll forward as that further impinges the nerves.
You need hydrodilation to expand the joint, massage to loosen the adhesions and finally massage to open the shoulder blade. That should release the bunches of nerves that have no room to move and end up referring pain in the arm.
You will be told that it needs to be treated conservatively but you and I are from Jupiter and those rules apply to earthlings.
Again, I can't emphasise enough how useful Pilates is for correcting the shoulder position.

Did MS cause the shoulder problem? Can't say but adhesive capsulitis can be brought on by viruses, fever or physical strain. It is not unique to any group. Sports people get it through contact and overuse that's why a sports medicine doctor is the right person to see. A neuro know zip about shoulder muscles and a little bit nerves. Sports medicine doctors know all about muscles and joints... get the right horse for the course. GPs just refer you to surgeon. Pity you had surgery. Hope they didn't do too much damage. If they sent you to surgery before hydrodilating they should be shot!

Regards,

[starfish1]

I injured the shoulder almost a year ago... had 2 cortisone injections, 5 months of PT, and tried deep tissue massage. After an MRI, he thought I had torn a rotator cuff tendon. During surgery, the cuff was in good condition, no tear, just bursitis. He cleaned that out and patched me back up. I've had trouble ever since. I got back to the surgeon next week to figure out the next step. Between the shoulder and the MS flare up, it's been a trying few months.

[Scott1]

Hi,

Where did he put the cortisone shots? That's not necessarily the same as hydrodilation.

If he "cleaned you out" that's also not the same as dilating the joint. You might need some fluid in there.



Regards,

[NHE]

I find it interesting that my neuro hasn't recommended any supplements besides 50,000 units of VitD2 once a week

Welcome to ThisIsMS Starfish1. Vitamin D3 is the active form of vitamin D. Taking large doses of the D2 form can lower your D3, not raise it. Please see the journal article referenced in the following post.

http://www.thisisms.com/forum/natural-a ... ml#p237957

High dose D3 supplements at 10,000 IU/tablet are readily available OTC. As such, there's no reason to be using high dose D2 which can inhibit D3 in your body.

[starfish1]

High dose D3 supplements at 10,000 IU/tablet are readily available OTC. As such, there's no reason to be using high dose D2 which can inhibit D3 in your body.

Very interesting... I will definitely take this to my dr. She wants me to take the D2 for 12 weeks and then recheck the bloodwork.

[NHE]

Very interesting... I will definitely take this to my dr. She wants me to take the D2 for 12 weeks and then recheck the bloodwork.

Here's a link to the full article. It might be useful to have this on hand when you talk with your doctor.

http://press.endocrine.org/doi/pdf/10.1210/jc.2004-0360

[starfish1]

Just pulled my lab results and it says Vitamin D, 25 Hydroxy = 19.7 (normal range 32.0-100.0 ng/mL)