Managing Symptoms

[YayaMommie]

Hi guys.  I need your help to sort through this.  I've been having new symptoms almost daily.  For sure weekly. It's getting really discouraging.  I can't take a dmd because I'm on another medicine that I can't take with a dmd.  And the medication I'm on is life-saving so the doctors want to wait until I take the full course of meds which is a year and will be concluded in December or January.  

In the meantime I've been kind of holding my own. But the last 6-8 weeks has been full of new symptoms. Things like new areas of my body buzzing - that comes and goes.  When it lasts for a while it starts to hurt.  Flashing lights.  Pretty strong face pain by my ear where it's been numb for a while.  It feels like it's being frozen and sharp awful pains simultaneously.  (Hard to describe but I suspect you guys know what I'm  talking about.). One hand going numb and now the other one slowly going numb too.

Do you know if these are signs of current inflammation?  I think i f I'm experiencing inflammation the docs will consider a dmd but I don't know.  They suspect ppms but there are different opinions from different doctors so the jury is out.  At my last neuro visit the doc (who's been doing this for 43 years and is still on top of recent research) told me that I should "start wrapping my mind around" the idea of not being able to work at some point in the near future.

Any input would be appreciated.  Thanks

[HVAC]

If your symptoms are coming on this fast you probably do not need to worry about PPMS it is slower and subtle. I did not know I had symptoms I thought it was just normal aging. My symptoms are so subtle I have to think if I have anything new. I just realized I have been having trouble walking for so long I do not have an idea when it started.

I do think you need symptom relief. Not all inflammation shows up on a MRI.
There are steroids and achtar to calm symptoms.

There are nerve pain reliever and muscle spasm drugs.

Alex

[TLC1104]

I have finally got how to do own thread.  Hahaha
Thankyou again.
T

[TLC1104]

Hi,
thank you do much for the replies. With regards the steroids,  the consultant said that until the results come back not to give them as I was quite a grey area as I was having totally different symptoms each sides of me. As soon as results came back he got straight onto my doctor to tell her to prescribe the gabapentine.  She's been great ss she's been making consultant any different symptoms I'm experiencing.  I'm gradually getting upto the recommended dose he suggested to her,  at the moment  I'm 200,200 & 200mg s day, building upto 300,300 & 300mg. I should be at that dose by next Monday.  The consultant has been great,  anything I want to ask him about he's told me to ring anytime.  This site is wonderful,  looking at how people are dealing with what they are and how everybody helps each other, it's the nicest site I've looked on.
I didn't know how to set a completely separate thread,  (i'm a silly newbie, hahaha)   I'll look how to do that but thank you for giving the information and advice.  
Thankyou both so much again.  
I appreciate it!
T.

[essdipity]

Hi, TLC. I'm in the US, and I'm constantly astounded by how frequently people elsewhere are hospitalized while being evaluated for MS. Here, that's likely to happen only when stroke is a possibility. Heck, sometimes even mastectomies are done on an outpatient basis! This is all driven by the huge cost of hospitalization, which in turn is driven by insurance companies, or maybe vice versa.

But that's not what you asked about, of course. Regarding gabapentin, the max safe dose is 3600 mg/day, taken in divided doses. People are usually started on much less, maybe 300mg, and in fact it's necessary to start low to avoid side effects. That doesn't mean one has to stay at 300 or whatever. Your doctor should be giving you permission to gradually go up until you get the relief you need (always staying under the max, of course). Gabapentin is effective for nerve pain of various kinds, and for many paresthesias such as tingling, etc. for most people. It does help me.

Gabapentin won't help if your legs are stiff, as that sounds like spasticity, which is not part of nerve pain. There are meds specifically for this, one of which is baclofen. There are also lots of other meds for other symptoms, but unfortunately not for everything, and so much can happen with MS.

I'm not a medical professional at all; no one here is. We base our comments on our own experiences and from reading so much from other people, also from reading good sources online such as research organizations and MS societies. I urge you to do the same, avoiding sites having something to sell, crackpot outfits and so on. The UK has good MS sites as well. Your doctor should be helping you actively. If he or she is not responding to your calls, keep at it, and get in touch with your local MS society chapter. There's a lot of good info about MS, so please take advantage of it.

Immi has already explained about DMDs, etc., so I'll end here. Hope this has helped. Next time start your own thread, okay? Much easier to keep things straight that way.

ess

[immisceo]

You beat me! My first stay in hospital was 9 days. It's surreal, isn't it? Were you given a course of intravenous steroid treatment while you were there? They usually do this to combat the acute, current symptoms you have. It's a treatment used sparingly, but it can be helpful.

With MS, you will likely be treated with get two types of drugs. Some, like Gabapentin, treat your symptoms. They help you 'feel' better. Which is great! But they don't make you better. Competent doctors will be prescribing these types of meds for you because they improve your quality of life.

Then there are dmds, sometimes referred to as dmts (disease modifying drugs or disease modifying treatments = these terms are interchangable).

DMDs play the long game. They will not effect the way you feel. Ideally, they directly effect the disease itself, helping you avoid some relapses and possibly accrue less damage over time. These are the drugs that mean most people with MS today never end up in a wheelchair, for example. But they're a tricky thing to wrap your head around. You can't very well appreciate the relapses you *didn't* have! But the scientific evidence is there.

There are many DMDs on the market today. Your neurologist will discuss your choices with you. I assume you're on NHS, so sometimes this comes into play in terms of your options. There are injectables, orals, infusions. Basically, there are a lot of choices. Choosing what drugs to take to combat your MS is the 'second wave' of overwhelming. First you're diagnosed (overwhelming!) then you get a mountain of drug literature (overwhelming!).

But when I was faced with that, I realised I much prefer that than the overwhelming of being told to go home and come back if things get bad. This was the choice for people less-than a generation ago. Feel free to start a new topic (the "Post a Question" button at the top of this page) if you want to make sure your question stands out.

[TLC1104]

Hi,
I'm a Newby and have noticed how helpful you have been,  if it's ok I would like it if you could give me a hand too. I was in hospital having tests, this was about 6 weeks ago. They let me go home after 10 days to wait on the results. The consultant phoned to say I'm dealing with ms,  I'm waiting on my first specialist's appointment to get confirmation and hopefully start anymore treatments needed. At the moment I'm dealing with numbness, tingling, heat sensitivity both legs and feet and also mainly left side of torso but right side still has heat sensitivity. The consultant got in touch with my doctor to tell her to prescribe me Gabapentin, I'm getting upto the recommended dose as told. Since being home everything has increased to what I was like in hospital.  But I've got to a point now that its hard to bend my legs. Do you think this will get easier ad I go through the medication?  Getting a bit worried about it.   Also regarding the above answers...what is dmd? Told you as was new,  hahaha
thank you
T

[essdipity]

It's a good sign, but time tells the picture of MS. I'm guessing that one 30-day stabilization is not too meaningful, several would be more convincing. But 30 days is the minimum, and few MSers have double-digit relapses a year. If they do, their neuros should try something stronger for treatment.

With one or two relapses, some neuros would take more action, some wouldn't. Often this is dictated by MRI, whether or not this really is an accurate gauge. Some neuros want to see enhancing lesions, some just want to see anything not on the last set. Some refuse to call it a relapse if neither of these is the case, thus (in my view) negating the problem of old lesions acting up. Obviously, these neuros don't have MS.

I noticed that you will be considering Copax or Tec. Unfortunately, Tec falls into the immunosuppressant category. Much less so than quite a few others, but still it does. I'm on Tec myself and have my blood monitored, so far so good, but I don't have another complicating illness such as yours.

You've had a tough ride and I sympathize. Keep posting for support, while bearing in mind that things are very likely to get easier to deal with as time passes. I send good wishes.

ess

[YayaMommie]

Thanks again.  I keep thinking of questions and quickly forgetting them.  Argh!  Cognitive issues!  

I'm on a specific medication they contraindicates a whole bunch of things.  No steroids.  No dmd.  (No ibuprofen, and a laundry list of otc and rx meds). Cytochrome 3AYP receptor (or something to that effect)

Due to immune system issues I will need an immunomodulator rather than immunosuppressant.  

I'm glad to hear that I will get a year of close monitoring to see if it works.  
So just to help me understand ...   If my symptoms stabilize for at least 30 days is that a sign of rrms???

[essdipity]

One more thought--you could ask about a course of intravenous steroids, IVSM. Unless other health issues prevent this, you have nothing to lose, and could be helped a lot, regardless of the type of MS you have. This is not something to be done regularly, but sparingly it can be very good. Does your neuro know how affected you are? If not, say so, politely but forcefully.

[essdipity]

BTW, if your neuro is delaying a DMD because you cannot be on anything that suppresses the immune system, then one of the 4 CRAB drugs, the early ones requiring patient-injections (Copax is one) is in order. These are well-demonstrated to be immunomodulators and not immunosuppressants.

ess

[essdipity]

It's not remission for a symptom or symptoms to ease up a bit here or there, only to come roaring back. For instance, I get extreme burning pain in my right leg and foot that comes on in the early evening and leaves overnight. This has been every day for quite a few years, and is a paresthesia, or abnormal sensation caused by cns nerves.

For a remission there first must be a relapse. Not trying to be funny here, I assure you. It's just the terminology of the disease. A relapse is the appearance of new symptoms or the reappearance of old ones, taking place 30 days or more after the last relapse. This does not mean that things go back to normal in between, as often this doesn't happen. But it does mean that symptoms level off and nothing major happens for at least 30 days. If other problems occur or recur in a shorter period, the patient may still be in the midst of the original (this time around) relapse.

This definition applies to those with RRMS. If new symptoms keep happening on top of old ones with no remission 'leveling' in between, it's likely the person has either PPMS or SPMS. There is also a Progresssive Relapsing form, which is quite rare. Neuros can't tell right away which form someone may have, so wisdom dictates starting the person on a DMD and then following him or her closely. It usually takes a year or more after diagnosis for this decision to be made.

There are exceptions, though, Kyle's situation being one of them. He had very isolated symptoms that remitted completely over many years before a neuro put 2 and 2 together. This resulted in an immediate diagnosis of SPMS. (Kyle, pls correct any misinformation.)

ess

[YayaMommie]

So the jury is out on ppms or rrms.  That's why my doctor told me that he would start dmd after I'm  done with the other meds. I'm just hoping it would slow the appearance of new symptoms.  My hands have "woken up" a few times.  Is that remission?  Even if it's for s short time?  I don't fully understand this disease despite reading tons of things.  

Since I have new things all the time I'm hoping that copaxone or tecfidera will slow things.  

[essdipity]

Even though you cannot be on a DMD at the moment, that doesn't mean you can't be treated for symptoms. It sounds as though you're having a really rough time of it, so talk to your doctor or doctors about symptom management.

There are quite a lot of helpful drugs out there. They will do nothing in terms of controlling MS, but they can make MS manifestations a lot easier to bear. Depending on the issue, there are meds for energy, bladder problems, spasticity, nerve pain, a few that may help with cognition, etc. Of course not every med is helpful to everyone, but there nearly always are choices. And sometimes, nothing helps a particular person with a particular problem. That's no reason not to try, though.

In your case, this could be complicated if you have other meds to consider as well, but doctors and pharmacists can research this for you. One very inexpensive but effective med for nerve pain is gabapentin (Neurontin). There's a great range of dosage, so a little might not do much and a lot might be needed. But that's what it's for.

You could have trigeminal neuralgia, based on your description of face pain. The usual prescription for that is Tegretol (carbamazepine). Turns out I can't tolerate that, but most people can. You may find, though, that a fairly hefty dose of gabapentin works just as well for this and other pain. Keep in mind that many meds must be started and stopped gradually, so read the accompanying material carefully. So many people will start this and other meds abruptly, decide it makes them dizzy or whatever, and then drop the whole thing, when it very likely could have been effective when tapered up very gradually.

I'm writing this to answer your question, of course, but many other newbies are likely to read it as well, so I've made this answer quite general. However, the gist of it applies in every case. If MS is diagnosed, or even possible/probable/wait-and-see MS, ask your doctor for relief from symptoms. Some symptoms just can't be helped, at least for some people, but why not minimize the ones that can? Bound to make life a little easier.

ess

[kwarendorf]

Hi YM -

If it is PPMS then discussions about DMD's are pretty much academic. None of the currently available DMD's have shown to be effective against PPMS.

Only MRI's will show if there are current, active lesions in your CNS. If there is you can talk about IVSM to reduce the inflammation. You can also treat individual symptoms without DMD's. In fact DMD's don't treat symptoms. They're aim is to slow the progresssion of MS.

Kyle