3 yrs Later ...

[MSSoldier73]

Hello MSWorld,

I am new to this site and hope that it becomes a place where I can get some answers. I am a 42-yr old African-American female who was diagnosed with RRMS in 2012. Since the Dx, my form of treatment has been Avonex once a week injections. In October my MRI showed one of the lesions larger in size than before. I had been experiencing more frequent relapses with numbness and tingling sensations in my hands and arms. After a 5-day round of IV infused steroids and 10-day tapering of Prednisone, the sensations never stopped. I sought out a new neurologist for a 2nd opinion and he suggested that I stop the Avonex and begin Gilenya. My first dose and observation is next week, after waiting over a month for insurance approval (which has been denied and appealed).

Lately I have been experiencing horrible relapses with my arms and hands feeling as if they weighed 20 lbs each and the muscle spasticity is unbearable. It usually lasts for about 15 minutes or so, but it feels like forever. Does anyone have any advice on how to manage this pain since I was told there was no medication that could be given to me?

[SNOOPY]

Hello MSSoldier73 and welcome to MSWorld.

Lately I have been experiencing horrible relapses with my arms and hands feeling as if they weighed 20 lbs each and the muscle spasticity is unbearable. It usually lasts for about 15 minutes or so, but it feels like forever.

An exacerbation is new symptoms and/or old symptoms lasting continuously for more than 24 hours. If your symptoms are lasting only 15 minutes this is simply life with MS

Neurologists usually will not prescribe steroids for sensory symptoms (numbness, tingling, ect) because steroids are not usually helpful, in the long term. Steroids should be used with caution. The more steroids are used the less effective they become and they come with short term as well as long term side effects.

Does any one have any advice on how to manage this pain since I was told there was no medication that could be given to me?

Many symptoms can be helped with symptom management medications. If you have muscle spasms there are medications to help...muscle relaxers. Pain can also be treated. Physical Therapy(PT) might be helpful for you arms/hand with the heavy feeling. Exercise and PT can also help with spasticity.

If your Neurologist isn't willing to offer symptom management medications then it would probably be a good idea to seek out a different Neurologist.

[JerryD]

Welcome to the boards, MSSoldier! Snoopy gave you a great response. I am curious about your neurologist. Is you doctor an MS specialist ? That is a very important, if not crucial, part of the MS journey ! Life with MS sucks! I know! Good luck

[MSSoldier73]

Thank you for your advice

Thank you both for your advice! I am seeing a neurologist that specializes in MS. Just started seeing him about a month ago so I will surely inform him about the pain and muscle spasms.

[jreagan70]

Hi MSSoldier73:

Welcome!

Forums and chat rooms can provide answers and helpful information if:

1. You verify all of the technical/factual information with authoritative sources before you use it.
2. You're willing to challenge the some of the ideas you thought were true and challenge the way you're doing some things. Support from a support group can include hearing things you don't like and being redirected from ideas that you might be attached to but aren't correct and aren't serving you. Answers doesn't always mean the answers you want or were expecting.

Does anyone have any advice on how to manage this pain since I was told there was no medication that could be given to me?

First challenge: Who told you that?
This is an important question because you've been to two neurologists, and both of them should know that there ARE medications that can help, depending on what the cause of the pain is.

If the cause of the pain is truly spasticity, there are several medications that can help. Baclofen is the most commonly used. Not every medication works for everyone, so there are others.

If your pain is nerve pain, there are several medications that can help. Gabapentin is the most commonly used. Not every medication works for everyone, so there are others. The nerve pain medications might also help with numbness and tingling.

Many people with MS experience both spasticity and nerve pain so are taking both kinds of medications.

For sake of argument, I'm assuming that you went right to the top and asked your neurologists about medications. It's a concern if both of them told you that there are no medications that can help, because it's a sign that they aren't on top of the knowledge they need in order to be treating a person with MS. A proactive neurologist would have prescribed gabapentin for you as soon as the numbness and tingling started.

The challenge here is in identifying where this disconnect came from. Did you not ask the right people, or do you maybe need to find yet another neurologist who is more skilled and qualified in the field of MS?

Second challenge: Smoothing out your experience with the disease by making sure you understand it correctly.

After a 5-day round of IV infused steroids and 10-day tapering of Prednisone, the sensations never stopped. I sought out a new neurologist for a 2nd opinion and he suggested that I stop the Avonex and begin Gilenya.

This might be part of that disconnect I was referring to, and it's about what your expectations of MS and medications are.

Steroids are used to knock down the inflammation that causes relapses and to try to shorten the duration of the symptoms. In relapsing-remitting MS, inflammation from a flare eventually subsides on its own anyway, which is what makes it relapsing-remitting. There's no guarantee that all of the symptoms will resolve after the inflammation subsides. Steroids don't affect the eventual outcome after a flare, so symptoms may remain to some degree even after steroid treatment.

From the way you worded your post, it implies that you went to the second neurologist not because of the enlarged lesion on your MRI, but to get relief from the numbness and tingling in your arms. In response, your neurologist is not putting you on a symptom-relief medication, but changing you to a treatment medication meant to deal with disease activity -- that is, the number and size of lesions and number of relapses. Disease-modifying medications don't treat symptoms.

It isn't clear from your post whether you're aware of the difference. You might be, which is what caused your question about pain relief. But it's important to note that Gilenya isn't intended to treat symptoms.

This next point is important to your understanding of your symptoms. The term "relapse" (aka attack, flare, exacerbation) is defined as symptoms that 1) are typical of an acute, inflammatory, demyelinating event in the central nervous system, 2) with a duration of at least 24 hours in the absence of fever or infection.

Those 15-minute episodes of pain are not relapses, and it's important to your understanding of MS and your communication with your doctors that you not call them relapses. They're episodes of symptoms caused by nerve damage from one or more previous true inflammatory attacks/relapses/flares/exacerbations.

The distinction between day-to-day symptoms (no matter how horrible they are) and true relapses is important for a couple of reasons:

1. They're treated differently, and identification of the nature of the episodes determines what medications are prescribed and what the expectations of the medications should be.
2. True relapses are used to track the severity and progression of the disease, and reports of false relapses gum up the data and lead to wrong conclusions and expectations.

So, to answer your question, YES there are medications that can help with the numbness and tingling in your arms and hands. To get the most day-to-day satisfaction from those medications involves asking the right person for them and about them, and having factually correct and realistic expectations about those medications and other medicines you're also taking.

I hope the answers you've gotten from everyone who responded to your post leads you to relief of your painful symptoms quickly.

[Temagami]

It is worth keeping a food/symptom diary for a while. I get the muscle cramps if I eat too much sugar or white carbs. It also happens with gluten and dairy.

I think that the steroids help long term if your sx involves your eyesight, otherwise I´ve seen no long-term benefit from the steroids in reading research. The steroids raise your blood sugar (which ironically could lead to blurry vision and muscle cramps) and weaken your bones and mess with your digestive lining. They are not harmless. I hope that your neuro had you take an anti-acid while on the steroids.

Gilenya has stopped new lesions from forming for me- been on it since June 2012. Have had relapses though.

Take care.

[jreagan70]

I think that the steroids help long term if your sx involves your eyesight, otherwise I´ve seen no long-term benefit from the steroids in reading research.

The same kind of research was done on eyesight, and there's no long-term benefit from steroids in treating eyesight symptoms, either. Fifteen years of the Optic Neuritis Treatment Trial showed that the final visual outcome is the same whether ON is treated with high-dose steroids or not treated at all.

As with any other part of the body, the benefit of steroids is in possibly shortening the duration of the symptoms. But even for vision symptoms, there's no long-term benefit to outcome.

[Temagami]

Thanks Jreagan. Do look up Adult Optic Neuritis Treatment & Management on medscape and it says what does help with ON.

[jreagan70]

I think that the steroids help long term if your sx involves your eyesight, otherwise I´ve seen no long-term benefit from the steroids in reading research.

Do look up Adult Optic Neuritis Treatment & Management on medscape and it says what does help with ON.

I did read the Medscape article and it confirms -- several times over -- that steroids do not offer any long-term benefit to recovery of vision after ON in MS, and nothing else has yet been proven to have an effect on final visual outcome over the long term, either. So, unfortunately, nothing new there.

[palmtree]

Hi MSsoldier,

Glad you have come to this site. Welcome! It sounds like you've run into some pretty incompetent doctors and not so good health insurance. I applaud your efforts to get a new neurologist.

The previous answers have given you a load of information. I hope it has been helpful. I


The good news is that there is a lot that can be done with both your progression an symptoms. It really sounds like the Avonex is not working. Getting on a DMD with a higher efficacy rate make s a lot of sense. If your insurance will not pay for Gilenya or another high powered DMD, there are a lot of assistance programs either through the pharmaceutical companies or charitable organizations and you don't have to be in poverty to get them.

You say you are having exacerbations but the only thing that has shown up on the MRI is an enlargement of your previous lesion. It could be that the lesion is just spreading. But your symptoms are a real concern.

Steroids are given to lessen the inflammation but do not change the final outcome sadly. Most people get significant relief from a round of IV Solumedrol, though.

The good news is that a lot can be done about your pain and spasticity. You need to get a neuro who will prescribe you Baclofen, Gabapentin and Lyrica.

I just hope you live somewhere where you have a choice of doctors.