Multiple Sclerosis Community

Dear marchingalong,

I'm sorry to hear of your worsening symptoms, pain and confusion, it is so hard to deal with an MS diagnosis and try to maintain a working life while at the same time attempting to get so many confusing questions answered by a neurologist. The beginning of this disease is the worst, most frightening, most stressful time, I do remember that even after 14 years of living with RRMS.

What concerns me right off, however, is that your neuro hasn't given you a clear explanation of why she is convinced of your RRMS diagnosis, you do have a right to hear her reasoning. And I'm confused about your neuro's explanation of your worsened symptoms being stress-related. Stress can certainly worsen our symptoms temporarily and can play a big role in causing forgetfulness and confusion, but it can also mean a flare, which should be treated with either an intravenous steroid or oral prednisone.

As far as your remark that you never returned to baseline after your initial flare and still suffer from nerve damage, that is very common, it means that you have permanent damage. Each flare I've had has left me more disabled than the last, though we all have a different experience. I can't always tell that I'm having a flare except that my symptoms do worsen and stay worse until I realize I should see my neuro about it. It's always my doc that tells me I'm in a flare, oddly enough. We do have ups and downs, and we adjust to those changes all too easily and therefore must see our docs for a physical exam and symptom history to determine whether we are flaring. It's very confusing.

What's more, your description of cramping, stiff, painful, legs fits the symptom called muscle spasticity--and there are drugs that can help that! I take baclofen for my leg spasticity (cramping, stiffness, pain) and there are others to try if that doesn't work for you. I don't know why she didn't prescribe an anti-spasticity drug for you, it would make your life so much easier.

In addition, there are anti-seizure drugs such as gabapentin and Lyrica that can help relieve neuropathic pain. Provigil treats fatigue. One side effect of this drug is skin rashes, so if you have such a problem you might want to mention it to your neuro. And if Provigil is causing you headaches, well, then there are two possible side effects of the drug. You might want to stop taking Provigil if the side effects outweigh the benefits.

To my mind, this all begs the question: Should you seek a second opinion from an MS specialist? It certainly would be worthwhile to find someone in your area who knows this disease very well and would discuss all your questions to your satisfaction. Unfortunately, one thing we all learn early on is that we must aggressively advocate for ourselves and demand better answers and the most effective treatments for our symptoms. Learn all you can about the disease, read through patient forums like this one and ask questions of other patients, we learn more from each other than from our doctors, I'm sad to say.

And finally, if you are finding it terribly difficult to work full-time then you might consider filing a claim for SSDI. I had to do that several years ago at age 51 after ten years of working full-time with the disease. You could explore the possibility of short-term disability or reduced work hours with your employer, too, that's usually the road we all travel until we exhaust all the possibilities.

I know this is a lot to digest, sorry if I bombarded you with too much. Take it a day at a time, one issue at a time. I hope you'll ask your neuro for a spasticity drug such as baclofen and start a search for a second opinion. Your local chapter of The National Multiple Sclerosis Society has a list of MS specialists in your area. Look up their website online for contact info.

Hope this helps. Hang in, you'll be okay.

Kim

Hi Marching

My first impression is that you need a second opinion . I am not saying you do not have MS but the way this neuro has gone about the diagnosis process make's me wonder if she has much experience with MS.

Now about Avonex I have been on it since my diagnosis ten years ago. It is not designed to treat symptoms caused by MS rather it is meant to treat MS by reducing the frequency of flares .

You talk about depression, one of the major side effects of Avonex is depression so if there is apossibillity that it is related you should talk to your doctor about changing meds.

Treatment of MS has to be seen in two seperate categrories one are the disease modifying therapies such as Avonex. The other is symptom management such as muscle relaxers for spascity, meds such as neurontin for neuropathic , anti depressents,meds for frequent urination , all of which I think you need to talk about with your doctor.

I would also talk to someone about the possibility of a seizure condition .I have simple partial epilepsy and have come round on the floor a few times with no idea how I got there .(well I figure it out)

For now see about a second opinion and let us know how you are doing ,do not worry about the rambling we all do it now and again.

Rory

thank you for your response. I will agree with my neuro that I am under an etreme amount of stress right now (helping care for dad with cancer, mom with heart disease, diabetes, and some form of dementia. My oldest sister was diagnosed as Early onset Alzheimers same time I was diagnosed with MS). I only work part time (20hrs now) as a hospice RN Case Manager. So, the stress is there and not going away anytime soon. I agree with you, whole heartedly that I need a second opinion. I have a friend with MS that goes to the Cleveland Clinic. I am going to try and get an appt with her neurologist.I will let you know how that goes....

You've been a big help.
Thanks again,
Lori

For Rory & Kim,
Again, thank you so much for responding. I've reached my limit. Interestingly enough, I had my 3rd MRI with & without contrast of the brain today. By the same radiologist that did my lumbar puncture and 2nd MRI. He has always stated he does not believe this is MS. The tech today commented "I would never have guessed you were being worked up for MS when I look at your MRI's (she did the last one, too, and remembered me). "Why isn't your neurologist also having your neck and spine scanned as well? There may be lesions there that we aren't looking for." Her and I looked at the pictures together and she did note a small new area on the right side, that was not there in June. I ended up in the ER this morning from uncontrolled high blood pressure causing chest pain. The ER doc so kindly stated to me "Im sure its all related to anxiety. (he had no idea about stressors at home) Your in the healthcare field and that alone is stressful. But with what you're up against, who wouldn't be anxious!" I started to think up some smart remark about bedside manners, but then thought "he's been the most honest, attentative doctor yet!" Can't fault him for that. I like it straight up, not spoon fed to me as someone else sees fit . When I called the neurologist to let her know my MRI was today and the continued BP issue, there was no response.. So I am currently looking/ seeking out a second opinion. Considering the very first MRI suggested 'undetermined neurodegenerative disease' and the radiologist doesn't think it looks like MS really scares me... The pictures are cool though, and comparing all 3 sets of same pic I can see some minor differences. Who knows? I will let you both know what I find out....

Thanks again,
Lori