Increase in symptoms out of the blue

[StaryNight]

Hi
New here.
MS Dx: 2008 RRMS with some relapses.
Been on various treatments ending with Copaxone
Have battled fatigue, memory issues, tremors, pain, etc as many have but recently I have had an increase in stiffness on my legs to a level that is pretty concerning. I'm going to call my Neuro in the morning but I'm just curious what brought this on so intensely out of nowhere. I'm having to use my cane just to get up or walk around if no I must hold on to the walls. Have never been much for pain meds but have always hand them on hand as my doc never wanted me to be without something if I need it. Been very responsible with narcotic pain meds but in the last week or so I've had to use a bit more than usual just to tolerate the pain. Using Zanaflex for the stiffness but the drawback for me wtih Zanaflex is it makes me tired and I already fight being tired.

I have a horrible time laying down for too long, standing for too long and sitting for too long yet moving is tough. I can't seem to be comforable for very long. A recliner is the best place for me to sit/sleep. When I first wake up the pain and stiffness is terrible

The pain is specifically in my legs/knees and hips the worst. I have to sit on a heating pad. This seems to help me. I make sure it's on the back of my legs and start of the back of my knees.

Any thoughts on where this is coming from or is this just going to be the general progression of MS

I was originally dx with RRMS but on my last visit they thought it may be at a higher level

I don't do much reading about MS online for a reason. I just feel there is way to much info out there but I was referred to this site as one that is a good place to ask some ?? and has a good group of folks

Thank you for your help/time.

Sidenote: I have, like most, very low Vit D level between 9-12 Also suffer from anemia and treated with IV Iron.

[kw202]

Hi


Sidenote: I have, like most, very low Vit D level between 9-12 Also suffer from anemia and treated with IV Iron.

If your vitamin D is that low you really need to raise it A LOT, and as soon as possible. I'm no expert, but that alone could be causing at least some if not a lot of your new symptoms and pain.

I recently had blood drawn and my vitamin d was 9.9 ng/ml. I took a 400,000 IU dose of D3 and every day for a week after that I have taken a 10,000 IU dose of D3 sublingual. A few days ago I was retested and I'm at 33.3 ng/ml which is sitll too low (we should be around 150-200). So I am again about to take a megadose of D3 and supplement daily after that. I would recommend you do something like this as well, just make sure that you get your levels checked in a few months.

[Scott1]

Hi,

I think we need to know a bit more about you first. Are you male or female. When were you diagnosed? What does your medical advisor say? What do you take at the moment as well as Copaxone?
Now can you tell me about the pain in your hips and legs? Is it more one side than the other? Is it in different parts of the legs? Which side has traditionally had the most spasticity? Where on the hip is it worst in relation to the bony bit on the side? Where do you feel the stiffness in the legs?

Regards,

[ElliotB]

"Increase in symptoms out of the blue"

As opposed to what?

[StaryNight]

Scott1

Sorry, Female
Dx: 208
Doctor tells me I started with RRMS and now have what they feel may be secondary progressive
All I use right now is Copaxone and Lortab Elixer for pain but I don't use very much of that. I also use Zanaflex
The pain in my hips is both sides.
The leg pain is very strange....best way to describe it is that it feels like it's deep in the bone/femur. The other is my knees and below are horrible with stiffness and pain. The worst stiffness is my lower legs. I have a very difficult time when first waking up and trying to get up or even if I just happen to sit in a chair for 30 mins...I can't get up without a struggle.
My legs often feel dead for lack of better word when I'm laying down in bed.
I cannot sit for too long, stand for too long or lay down for too long. I have a very hard time getting in/out of any cars/trucks.
If I have to walk up any stairs ( at home it would be deck stairs as I live in a one story) it's very difficult.
The pain in my lower legs is so bad sometimes I'm about brought to the verge of tears...only relief is a bit of pain meds and resting for a little while


ElliottB-- As opposed to just having MS and feeling crappy daily. This is an increase in pain and overall feeling terrible

[Scott1]

Hi,

Lortab is an opiod. Some people have very poor responses to the opiate group and go on a trip. It may mask pain but it doesn't make me feel that it is an answer for you.
Zanaflex stimulates the adrenergic receptors which will influence the sympathetic nervous system (fight or flight stuff) and diverts blood flow to skeletal muscles. They will also influence the contraction of smooth muscles by increasing intracellular calcium flow.(Maybe if you have bladder problems.) I am going to be a pain and say I wouldn't do it that way. Increasing calcium signals skeletal muscles strands to bind to each other. When that happens you need to rely on ATP to signal them to release and that is in short supply if you have MS. (ie muscles will get tighter)
Calcium in released from a store in the cell called the sarcoplasmic reticulum. That triggers muscle contraction. We have trouble making it reverse. The flood of calcium is triggered by a surge of sodium into the cell. The sodium needs to displace Potassium so if the potassium displacement is slowed so is sodium and calcium flow. That's how Baclofen works.
I think your doctor assumes all neurotransmitters are the same but they are not. As you are on Zanaflex be very careful how you come off it as cardiac muscles are the same sort of striated strips of protein strands as skeletal muscles and suddenly discontinuing suddenly can cause heart problems. I would rather you used a very small dose of Baclofen (5mg at night) rather than Zanaflex.
Do you have any arrhythmia issues? That will be the electrical currents being disturbed by too much calcium without a balancing agent. Magnesium may help but get some guidance.
Copaxone is a polymer made of the same four ingredients as Myelin. The assumption is it distracts the T cells. To me, distraction is a decoy not a cure. Others can disagree .
I did ask which side is worst (I meant initially). Usually one side is and the other is possibly ok. The problem is our bodies will always cheat to find the best way out of a solution. What we end up with is both legs feeling the same. You need a specialist to look at your gait to decide which leg is the crook one (a real rehab person-prof level). The chance will be you bring one knee forward in a straight line and the other prescribes a curve.
The stiffness in the lower leg probably is a mixture of tightness in your hips influencing your gait and tightness in the calf. You need a rehab specialist who works with botox. They will effectively disconnect the neurons that drive the tightness. They really chase motor neurons rather than muscles. If you can find one to release you then you need to undertake some exercise to stretch the released muscles. When the neurons reconnect to the muscle you need to have stretched it as long as you can.
The change in your gait can mean the better leg works so hard that you end up with bursitis in the hip. That needs a shot of cortisone in it which needs a specialist. It is a big issue to overcome. I would suggest to go to small pilates class and tell them you want to open the hip and not seat the leg bone in the socket.
Even though it doesn't feel like it, you need to address the hamstrings and calf in the worst leg and exercise as much a possible to stretch all the muscles.
There's more but that enough for now. If you decide to exercise I'll tell you what to focus on.
Regards,

[ElliotB]

I wish I had better news for you but when it comes to symptoms associated with MS, the general rule is that there are no 'rules'. It is very important to recognize that everyone is affected differently when it comes to symptoms and progression. What works/helps one may or may not work or help another.

Diet and exercise are thought to help many. As are supplements and lifestyle change (elimination of all stresses). Have you tried/applied any of these principles?

You say you don't do much reading on the internet. I can understand that. Do you read published MS books? There are many excellent ones that present ideas that could be extremely beneficial.

With regard to your leg pain/stiffness, do you do any PT or exercises specifically for these issues?

You mention that your vitamin D level has been low. Do you take vitamin D and/or other supplements?

[StaryNight]

Hello Scott1 Thanks for the very informative posting. I'm an RN but I certainly learned alot from your post and will be calling my neuro to discuss. Thank you so much. Going to print this off and take it with me. I need relief from the stiffness in a bad way. The stiffness causes me pain and I'm miserable. I rarely used the lortab and it does help when I have big pain going on but I'm careful with it, always have been. I've been given an RX for it since 2008 but one Rx lasts me a very long time. Again, only for big pain. Thanks for the info on Zanaflex. The docs swear by it. I have 2mg doses so it's the lowest dose available and I don't use it all the time either. I have tried baclofen and had nausea no matter how I took it. Apparently is a rare side effect but it's one I have. Couldn't get past it. Can you suggest a particular magnesium? I do take Vit D drops. Are you a medical professional? You are so knowledgable about MS and provide great info. I'm grateful for you. Thanks


Elliot: Thanks for your response as well. No formal PT but I do some excercise at home. I have these walking tapes that are walk 1-2 or 3 miles. I do them as best I can. I have trouble bending my knees. It's awful so some of the walking moves are tough for me but I do the best I can.

I also have trouble getting in/out of our vehicle. We have an SUV but it's not high off the ground. I cannot get into the truck like a normal person. I have to slide onto the seat and try to get my legs inside. It's very frustrating.

I also have to pace myself. I have a few good hours a day to get things done before I just can't walk very far without just being in agony which is what drives me crazy. I'm frustrated with it because I was always one to go 100MPH always. It's been a tough run with this MS.

[Scott1]

Hi,

If you think I know something then it's only because I have had MS for a long time and seen and tried many things. I am absolutely not a medical professional but I can read which is more than many of them seem to do.

If you think I say something different its because I try to read the stuff that your doctors don't read in the journals they throw in the bin. (many other people on this site are well read also)

There's two big issues for you at the moment; elements of fatigue and sore hips and legs. Take them away and how would you feel?
There are some common issues with both but you need to treat them like a set of individual. unrelated problems.

I have tried to keep my little history/ideas in one place so go here if you have the time - apologies for the length but nothing is hidden away http://www.thisisms.com/forum/regimens- ... 24019.html

Fatigue is the really big one although you are probably distracted by your legs.

If you can, get tested for EBV, mycoplasma, chlamydia , lyme, babesia and borrellia plus any other bacterial infection that your doctor can think might be relevant in your environment. (Being a nurse is a great way to collect gram positive bacteria)
Also test for nutritional deficiencies, run a fasting amino acid test and determine where your uric acid level is relative to normal range. That should give you a picture of whether you are deficient in something or have the signs of infection which might be causes of inflammation.

If you show up as having had EBV but not a current infection that is still enough as it is a herpes family virus and will still be resident in your B cells. It is a potent source of superoxide and , in our case, its too much.

If the doctor is amenable and other infections have been ticked off the list try 500mg of Valtrex morning and night. This is pretty much a forever and ever practice. I have been doing it for many years without any ill effect but some people have problems which I think relates to unforseen interactions with some supplements.

The next thing to try is 150mg of CoQ10 in a gel based capsule (pref VitE related oil). Every second night raise the dose by 150mg until you get a reaction. Mine was to suddenly wake up at 2am as bright as a button. It may not happen to you because there are many variables. Cap the dose at 600mg a night and see how it goes. CoQ10 is integral to the functioning of the electron transport chain inside the mitochondria.

Next add 2x1000mg of acetyl-l-carnitine morning and night. It binds to CoA to create a shuttle for ADP and ATP to cross the mitochondrial membrane. This is important if you want to make and spend energy.

Try and shift your response to inflammation from Th1 to Th2 mediated by having a capsule of curcumin morning and night. I think it works. The alternative are some of the blockbuster drugs with side effects.

I have just added Magnesium to my regime. I comment about on the last page of the post I mentioned. This is the one I use - http://www.ethicalnutrients.com.au/Prod ... vQodl5EM3A its straight off the shelf but the form is probably the most important (predominately diglycinate)

The soreness means a few changes. I think a large part of yours is a response to spasticity. Massage and a stretching based exercise like Pilates or Yoga are a must. If you have access to rehabilitation specialist see if you can get some botox in one leg. It is a godsend but you must be prepared to exercise. If you are not then don't bother trying botox. The principal is based on stretching and strethening muscles whilst they are disconnected from the neuron. When the connections regrow the muscle will hopefully be longer so a short term solution becomes a long term answer.

Nothing you have mentioned is new to me, perhaps you should at least gloss over what I wrote in the regimens sections and look for common ground. Happy to try and answer questions and I do not have a monopoly on ideas.

How big was your Baclofen dose? I can only handle 5mg at night. Sometimes I think they prescribe a sledgehammer when a thumbtack would do.

Regards,

[1eye]

Do not discount real, physical damage. See a good physiotherapist. I am sitting with my arm supported because about a month ago I fell. The symptoms were weird, but included deep pain in several places in my back and all over my arm and hand. I thought it was nerve pain. Thank god I didn't see a neurologist. It turned out to be referred pain from everywhere but the real source.

A year ago last August I broke my collar-bone. Doctors here refuse to set these breaks. It healed, but I had a weird bump on my shoulder from it.

Last week an Xray tech told me I had (in a small fall) re-broken the collar bone. I have been on very strong pain-killers since then. I expect to be fine in a couple of weeks (except for my usual SPMS symptoms, none as painful as this).

Still have the weird bump.

I only take the occasional baclofen when my leg twitch gets especially bad.

[StaryNight]

Hi Scott1
Yes and being a Nurse that has been to both war zones added to the "could have caught something". I was tested up the yazoooo 10 times over. They initially thought I had some funky virus as I became very ill after my last deployment but then they all collectively decieded that I had MS based on the MRI/Spinal Tap ( positive for onco bands was what they were very stuck on) and it went from there.

I forgot to mention. I cannot sleep without a heating pad under my rear end as the heat helps the pain/stiffness in my hips. If I work in my office at home I have to literally...yes....sit on my heating pad..I have it all set up on a blanket in my chair. It's insane but it helps and it's a big enough heating pad that when I sit it gets my upper legs too which helps.

My knees have been horrible the last few days. It's like the front of them will not bend and the pain/stiffness is crazy.

I failed to mention ( memory issue as you can see). I'm hypothyroid ontop of this. I also have consistently high TPO counts on my labs.

Also have severe amenia. I have IV iron treatments every 6 months. I do 6 week stints of IV Iron. Sorry. Was so focused on the MS and I've been very very tired lately. The fatigue is bad.

I have battled walking with a cane. I guess it just felt like MS was winning if I needed it and I know that's a bad way to look at it but I've been fighting this and thought I could overcome it like everything else I did before. I actually don't do well with a cane ( whether that's in my mind or not) because it seems to create more trouble for me. I do better walking close to walls or if with my husband he always walks near me and he has always held my hand so nothing new there

Baclofen dosage was 2 20 mgs in the am/ Same in the pm. Crazy I know!

and they put me in neurontin initally but they found out they gave me way to much. Yep, wasn't the first OD of meds I was given. They did it with Solumedrol too and from that day forward I refuse sterioids. I ended up in the hospital as a result of being given too much. Never again.

I'm going to look into everything you wrote and I do appreciate you taking all this time to respond to me and help me.

I'm very grateful to you


1eye.... How do you feel on Baclofen? It made me sick as all get out. Very interesting about the referred pain. I had a bought with my left arm for about a month. Not sure what caused it but it was very painful for about a month. No injury to the arm. Nothing that I could recall but it let up one day and that was it. Thanks for your post

[Scott1]

Hi again,

Can you recheck the tests for mycoplasma in particular. Look for M.haemohominus if your white blood cell count is down.Check for as many mycoplasmas you can.

If they have a test for hemoplasma then get that as that may explain some of the anemia. A Hemoplasma will scavenge glucose from the blood plus all amino acids. Your calcium activity will increase as well. Look in the marrow and the spleen as well as the blood if that is unsuccessful.

A test for Bartonella as well would be a good idea (try Bartonella Quintana in particular).

Tests for everything often turn out to be quite vanilla and I couldn't care less about your cholesterol level.

That Baclofen dose would have wiped me out. It influences the gamma-amino-butyric acid beta receptor (GABA beta) and they are all through your intestines as well. You should have started at 5mg at night and gradually progressed it but I would stay at the starter dose. This is a very good example of more is not better.

I do not doubt you have MS but it sounds like you have multiple infections and each can be a source of inflammation. Treating the core of MS (if you think like I do) won't work if you have too many coincident infections as well as they often mimic and magnify issues.
If you would like to step outside the normal read "Healing Lyme disease coinfections" by Stephen Harrod Buhner. I have no idea if you have any Lyme issues at all but the work on mycoplasma in that book is brilliant.
I'm so pleased for you that your husband is a good friend. They are hard to find. Do hold hands and walk together.
Regards,