You could look up your local chapter of the National Multiple Sclerosis Society website and drill down to the employment section to read their tips. There is a helpline to call as well.
Another source might your county health and human services department. I used that resource when I stopped FT work as an admin asst, it paid for my training to be a medical transcriptionist, though my subsequent internship proved too demanding and I didn't pursue a job.
As far as job opportunities, that's a tougher one. What do you like to do? You might want to think in terms of something you would enjoy that has value rather than putting pressure on yourself to take the burden off hubby. I know how you feel, believe me, I felt terribly guilt-ridden about no longer contributing to the household and losing my independence. We take a hit to our self-esteem for sure.
I can only tell you what I work at now and how I found it. I'm an MS patient consultant/advocate/writer. I started out here on WebMD doing research and answering patient's questions. I also wrote a blog about coping with MS. A recruiter found me here and on my blog and offered me a consultant gig. Through networking, my consultant colleagues recommended me for a job writing and moderating an MS patient support site. I was already a writer before I developed MS, so that was a skill and a strength that came in handy. I set my own hours and can write as much or as little as I want.
So I found PT work that is my interest and which has value on several levels. It supplements my SSDI income.
Also know that once you get SSDI, there is a Ticket to Work program which you can read about on the SSA.gov site. You will occasionally get a call about opportunities to do customer service at home jobs that are legit.
Cognitive dysfunction does occur among MS patients and is mild to moderate in most patients. What they are calling dementia isn't necessarily the same as what occurs in an Alzheimer's patient. The word dementia sounds scary and it conjures up some pretty extreme images. However, memory loss is very common in MS. I have it myself.
In your follow-up with the doc, you will likely discuss rehabilitation and medication. There are memory exercises you can do, for example. And as far as working, that depends on how you are managing in your present job and exploring options for other kinds of employment. My reading suggest that doing some kind of work--keeping your mind engaged and challenged--is beneficial. On a personal note, though I retired from full-time work in 2009, I now do part-time freelance work online, choose my own hours. There are options out there for you.
I hope you will let us know the results of your follow-up appointment. Good luck to you.
There is no way to know how you will recover or even whether your symptoms will go away. Every person is different, and every flare resolves differently in the same person. You might fully recover from one flare, but sustain some permanent damage from the next one.
Steroid therapy will only speed recovery, but will not effect the outcome.
That's why we take disease-modifying therapies such as the injectibles (Avonex, Betaseron, Copaxone, and Rebif) or infusion therapies such as Tysabri, or oral therapies such as Gilenya, Aubagio, and Tecfidera. These drugs are designed to reduce the number of flares and new lesions, reduce the severity of flares and their disabling outcomes, and slow the progress of the disease.
Time will tell regarding your numbness. It's a waiting game, unfortunately. Hope this helps.
I have read some patient's accounts of this happening. It is possible for lesions to disappear, but this isn't common and it doesn't mean the MS is cured. What's more, some enhancing lesions can heal and not leave a scar, either by the body's ability to heal itself or by the benefits of our disease-modifying therapies.
I have heard of scar tissue not showing up on follow-up MRIs. But that could have several causes, one of which could be the fault of the MRI equipment not picking it up on the scan.
What is most important to know about MS is that the body's CNS is under constant attack by our antibodies even when we are not having a recognizable flare. New lesions will eventually appear over time while we are in the inflammatory stage. Black holes will appear when we are in the progressive phase. Once we develop MS, we have it for life.
I'm so sorry you've had to go through this. Not all neurologists are good at diagnosing and treating MS, and that's why it's important to try to find an MS specialist. If you're struggling to find one, you can contact your local chapter of the National Multiple Sclerosis society for a list of specialists in your area.
Please don't give up, there is help out there for you. Many of us struggle with what you are going through right now, you're not alone. Get a second opinion. We have to advocate for ourselves to get the care we need and deserve.
Are you taking a muscle relaxer? Your extreme neck tightness sounds like muscle spasticity, which is increased muscle tone that can cause cramping and intense pain. It is one of the most common MS symptoms, I have it myself.
I take baclofen for spasticity, there are other meds for it as well. I also use a heating pad and it works well for me.
Having herniated discs in your neck can cause pain, too. If you have spine problems they would have shown up on an MRI. I have that condition as well and I use a heating pad for the neck/arm pain it causes.
Your neuro ought to know all about muscle spasticity and should be testing for that whenever they give you your physical neurologic exam (which should be every time you see them) that tests strength, reflexes, coordination, balance, and sensation. If your neuro doesn't talk to you about tightness in your muscles then something might be amiss. You might want to find another neuro.
You're wonderful to want to educate yourself about your fiancee's MS There are plenty of sites out there where you can learn about MS and also interact with people who are caregivers of loved ones with MS who are experienced and knowledgeable. Here are several:
I have had short periods of inexplicable worsened spasticity/muscle spasms and pain in the legs, but I wasn't in a flare. My neuro put me on Lyrica for the pain and I got some relief, but I'll add that those worsened symptoms were temporary and my legs returned to baseline spasticity/weakness after a few months.
I have had to increase my baclofen dose for spastic muscles just recently after many months of increased stiffness. It happens periodically.
It's really important to stay active every day. Try not to sit for long periods of time, that will stiffen our legs and invite spasms faster than anything.
If you can manage it, do stretching every day to ease spasticity in addition to taking a muscle relaxer. Calf stretches are very easy and they will make an immediate improvement. Gentle, basic yoga is one method of stretching. Aquatherapy is a safe and painless way to stretch/exercise those legs, too. A PT order from your neuro can make that happen.
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