Does anything help with sensory symptoms?

[kckc11]

My husband (age 28) was diagnosed with relapsing/remitting MS 4.5 years ago.  For the most part he has been doing well aside from fatigue, depression and left arm numbness (I suppose that doesn't sound all that well...).  Anyways, he's recently started having fire/ice feeling in his left arm.  It gets so bad that sometimes he has to quickly put down our kids if he's holding one.  Is there anything he should look into as far as treatment for this?  

Thankfully the symptom started before he started his newest attempt at an antidepressant so we know it's not due to that.  We have been under a lot of stress lately with an upcoming move and the end of his school year so I assume that's been adding to his MS symptoms.  I look forward to hearing your advice and am glad I found this group!

[rendean]

Hi kckc,
I have the exact same symptoms as your husband. I have found no specific treatment other than the usual gabapentin and an anti-seizure med to add if the gabapentin isn't cutting it. You didn't mention what treatment you have tried.

We have many  on the forum who have had success with acupuncture, mediation and other alternative methods. You didn't mention what if any, drugs your husband is currently taking.

Stress certainly plays a big part in symptom flares and that may be what kiced off this newest symptom. Have you called and informed his neuro of the new change in symptoms?

Welcome to our forum. It's a great place to be. Here you will find encouragement, support and info on the newest  and most effective ways to help fight this battle. So, welcome  from all of us!

Let us know a few more details and perhaps we can help you find a more definitve solution to your problem.

Warmly,
Ren

[kckc11]

Thank you for your nice and quick post back to me!  I don't know why I've never thought of joining an internet group for people with MS and their supporters!

Here's a little background and current information:

Diagnosed in 2006 after experiencing l'hermitte's sign, full body numbness, and loss of dexterity in left hand.  We received his diagnosis 2 days after we returned from our honeymoon sitting in our car reading what the doctors were sending his insurance company.  He was a long-haul trucker and was off due to the symptoms when we met.  He had been definitavely diagnosed in April 2006 but no doctor told him and we read the MRI results by ourselves in September 2006.

Shortly after MRI confirmed lesions, he experienced diplopia

He struggles with almost constant fatigue and left hand issues even between relapses.

First round of treatment was BetaSeron but he developed nutralizing antibodies

Currently takes Avonex and Gabapenton

Started taking venlafasine (effexor **spelling?) 2 days ago to help with depression.  The depression is likely caused by a combination of things i.e.:

     MS symptoms that suck.

     Having very little support where we live (hence the move)

     Financial difficulties

     Relationship difficulties between him and I (it's tough to deal with all of this, and I
     confess I am often not very supportive -- I know it's harsh and probably unfounded, but
     it's really tough to see someone who looks healthy and believe that they're not just
     making excuses for not being able to do things sometime).

     Worries about what the future will mean for our family and whether or not he'll be able
     to work etc.

We don't currently pursue any non-medical treatments and I am interested in finding out about some in hopes of helping him try some things that might work.  I think I'm going to try to get him on here because I know that he knows that MS is very personal (as in everyone experiences a broad array of symptoms and some things work for some people but not others).  

I think he is somewhat cynical about possible alternative treatments even just healthy diet etc.  I think it would be so good for him to talk to people who have been there and realise that even though symptoms can be subjective there are people who have likely been where he is and would like to help him.

Also, we are moving to British Columbia and would like to know if anyone has any specific information on what kinds of supports we can apply for there (government etc.).

Thank you all so much.  Like I said, I don't know why I didn't think of this sooner and I am so excited to have people to talk to who actually understand what it's like to have MS as well as what it can be like to live with someone who has MS.  I want very badly to be a supportive and loving spouse to my husband through ANYTHING, especially since I chose to marry him knowing he likely had it!  I love him so much and I would love to find ways to make our life better!

[rendean]

Dear kckc,

I ,too, have diplopia on occasion as well. MS can be such a drain on the family. The National Multiple Sclerosis Society(NMSS) has a great deal of literature ad other resources to help deal with this cantankerous disease. In act, one of the pamphlet is named "But You Look So  Good".

The NMMS will send you any literature you are interested in and they also offer some financial aid for things such as cooling vests, etc if needed.

I'm glad you found us. We are a friendly group. Weekends are usually slow.

Please look at the upper right hand corner of the  page next to yellow icon, this is where our Health Pages are located. There is a wealth of knowledge on a variety of subjects.
A good deal of them were written by Quix , a retired pediatrician (due to vertigo) and therefore is excellent at writing these pages.

The rest of use are not doctors , just MSers with experience and support and personal experiences which help a lot  towards not feeling so isolated. I do believe we have a member in British  Columbia so hopefully she can help you with the support available in that area.

Welcome and come back with any and all questions. We don't mind answer ANY type of question. BTW as far as the gabapentin and Avonex go, the  gabapentin can be augmented and other drugs added to help with the symptoms. Avonex is known to cause depression as a side effect.

Warmly,
ren

[Sparkysarah]

Hi and welcome to the forum..this is a great place to learn about MS with folks who are non judgmental, very informative but above all understand and we have people with MS as well as relatives and carers. Personally I am always delighted to see a new face who is a relative wanting to find out more because we all need people around us who understnad and can provide support.

As you say it is a condition that is difficult to get to grips with, easy to ignore if you can't see it when you don't have it yourself and frustrating as there is nor norm and it can strike with a relapse or fatigue when you least expect it. The unpredictability is hard as I find that sometimes I just have a bad day without any obvious trigger, but more often than not if I have had a busy day or been out socialising for an evening I am likely to feel more tired the next day.

I have been diagnosed for a year and in that time I do not think my husband has come to terms with my dx or begun to understand it (partly becuase he has been away a great deal with English army in Afghanistan). However now he is home I recognise that he does not want Ms rammed down his throat or a constant reminder, so I prefer not to make a fuss unless I really need help or am so fatigued that I simply cannot do something. What would help me would be if he would voluntarily offer to do a little bit more to help without being asked.

One of the forum members (COBOB) gave an excellent explanation of daily fatigue by saying that we have a bank of energy and if you start out with ten units and push yourself hard all day, once you hit one unit then your reserves are nearly all used up and there is nothing left to give..this is when we may need some help.

Anyhow that is just my initial thoughts on how you can help your husband..but you have aready made the first step by coming on this forum and seeking support for yourself. It is not easy understanding MS and I strongly beleive that partners also require support so as Ren has suggested the more you understand about it, the better able you will be to help yourself as well as your husband.

Best wishes

Sarah

[sllowe]

Hi there,

Belated welcome to you!

Developing NABs are not proven to render the medicine useless where disease modifying meds are concerned. Did the neuro mention this? Betaseron is the original MS med where interferons are concerned and has a proven track record.

I have to say, Kc, I disagree! You are very supportive or you wouldnt be here! I admire that :) It really can be an invisible disease and I commend you for seeking techniques and info for hubby - thanks for trusting us to that task.

I feel one of the best things you can do is to be the expert you are in his body language. So many people really don't understand the problems inless they are close up and personal.  Does he get frustrated when he has to put the baby down, or stop midway through other things? If so, just reassurance that it's ok goes a long way. Ultimately it would be nice to get rid of the burning, but short of that - it's his response to the problem that will help him most.

I have heard some on the forum speak of Lyrica for relief with neuropathic type pain. We have a good Health Page on that too if you have time to peek at it.

His worry will contribute to depression. I hope the meds kick in quickly for you and him in that regard....
You've really hit the nail on the head I must say with your questions. You've addressed disease management, symptom management and coping mechanisms. Hope we can fill in the gaps on those 3 important topics.

It's nice to have you here with us! We definitely understand! We do this together because it helps us cope too!

See you around!
-Shell