Last post Fri, May 16 2008 11:36 AM by Michele McHenry. 39 replies.
Hi Everyone,
I thought it might be helpful to have a place to talk about the many different ways MS shows itself. Whether it be questions about what you are going through or just to share some of what you've seen MS do.
I was diagnosed in 1992. Since then I have often wished I had someplace to go to ask, "Has this ever happened to you?"
Lately I've been dealing with a lot of electrical shocks down my arms. Different from my neuropathy and spasticity, this is like a low-voltage charge that runs down my arm and terminates in my hands. It usually causes an immediate loss of muscle control in my hand. I use to have a TENS unit and I remember trying it on my arm once and when it pulsed on I lost complete use of my hand. This is just like that. When the shock happens I drop anything I might be holding whether a cup or a page in my magazine.
My first thought is a spinal issue from my Intrathecal Pump. I have request an MRI to see if there is something to that but since it has been 7 months since the pump was implanted I'm not so sure.
This began several months ago but lately it has become more and more frequent. I have also noticed an increase in spasticity. Related?
While my meds have changed this pre-dates any of those changes so I don't think it is med related. Although it wouldn't be the first time meds have had a delayed bad-effect onset.
I appreciate anybody's input.
Eeyore,
That electric shock down the arm causing anything you might be holding to drop; I have that symptom myself. I do not have a MS diagnosis but rather MELAS which is more of a muscular dystrophy. I have lots of neuropathy of which some comes from MELAS and some comes from diabetes.
In reality, since becoming sick, or I should say since my symptoms showed up (I've had MELAS all my life), many disorders have similar symptoms. Almost the same as prescription drugs. By that I mean, most drugs seem to have the same side effects. Imagine that! LOL
Good thread and I hope we see more comments!
Dave
Thanks, Dave.
I should have mentioned that along with MS I have been diagnosed with Fibromyalgia, Parkinson's, Chronic Fatigue and Arthritis throughout my spine and in my joints. I asked basically the same question: Since the diseases mimic each other in their symptoms how can they differentiate one from the other in a diagnosis? In other words, are they certain I have all of these things and it's not just one with many symptoms? Over the years I have come to understand the subtle differences and thankfully I have an EXCELLENT doctor. Three, actually. I never thought I'd be able to say that!
I don't see much of my Nuero since there really isn't much he can do but adjust my meds and the other docs and do that. Besides, I don't really care for him. The fewer chefs in the kitchen, the better.
My point, with all of the meds and the different diagnosis it is hard to say what is causing what. It doesn't really matter as I am more interested in fixing the symptom since the disease can't be treated. Between disease and drugs, my nervous system is under quite the assault. It is no wonder it is so out of whack.
My neuropathy has continued to progress to a now constant, intense pain. I was on rather high doses of Neurontin but eventually it stopped being effective. Lyrica is the newest addition and, although the jury is still out, seems to be promising. These electrical shocks with loss of muscle control are just the most recent and most disturbing symptoms.
I handle pain rather well, it's the loss of control I have the most trouble handling
Eeyore
One thing you might have to decide for yourself is this. Whether or not you are "content" with your diagnosis. I have seen folks go from one medical professional to another looking for an answer. And yes, different answers they will generally get.
If you call the IRS up on the telephone about a tax situation, five times with five different IRS reps, you'll also probably get five different answers.
I'm not sure if that is a good analogy or not but in all cases, we have to trust that those helping us are competent in their field. Where the difference of opinions (diagnosis) comes in is sometimes caused by what the medical/tax professional is most familiar with. I quit being a perfectionist when I accepted the fact that no human can be perfect. LOL
I'm no medical professional and I trust my physician and specialist team 100%.
That is what you need to decide. "Do I accept their answer or do I want to keep searching?"
If you are looking for somebody to tell you that you have a disorder that is curable, so be it. For the most part, you will just be treating your symptoms short of a miracle occuring. I never give up hope that a cure will be found but I also don't sit around waiting for the cure either. If some disorder "thinks" its gonna cut my life short, I gonna "cram" what I want to accomplish in long before its time.
My 2 cents on my outlook. And by the way, I have had two independent research facilities confirm my MELAS so I look no further. Now its up to me to live out my life.
I agree completely. The first couple of doctors who brought up the MS weren't doctors I knew or trusted. That is what I told myself. Looking back all those years ago I know I wasn't ready to hear it, either (I still don't trust them <grin>).
I now have a medical team I -do- trust and I have had a couple of very good doctors in the past. I've been seeing my current primary for 5 years. When I first started with him he was young and not confident in his knowledge of MS. When he took me on as a patient he hit the books, the 'net and every source he could to further understand the disease. He credits me with his ability to take on MS patients today with confidence and has relationships with several neurologists in the area. While I was uncertain at first of his inexperience, I liked his willingness to learn and his ability to stay grounded. Arrogance is =SO= dangerous. It turns out it was a great match and he has been instrumental in forming my current team of doctors.
I have been to the Mayo Clinic when I wasn't certain my former neurologist was accurate with a diagnosis. Turns out he was. While I still am not afraid to question my doctors, I stopped looking for that better diagnosis back in the early 90's. It was then I learned to accept my life "as is" and that is when I began living it again. It really does come down to perspective. My faith allows me the ability to stop, take a breath and know I am not alone with life's complications. My stubbornness lets me push the envelope a bit further than I should, knowing I am going to pay the price for it. Heh.
The diagnosis gives me a name to call it. I'm not one to wear it as an identity. Same with a career. When I finally had to retire it became painfully obvious how evident this is in our society. When did you last meet somebody and one of the first questions wasn't "What do you do?" Our jobs are so often used to define who we are. At first I cringed having to meet somebody, just waiting for that question. I didn't know how to answer. It took some time but I finally became comfortable with the change of lifestyle...again.
That seems to be the ongoing theme with MS or Parkinson's or <fill in the blank>. Each stage brings about another lifestyle change. In or out of wheelchairs, paralyzed (mine was the left side at first, now a constant weak side) or just plain tired.
These last few weeks have been more difficult than most. Could be the progression of the disease but it may simply be that unbeatable thing called AGE! <grin>
HAPPY NEW YEAR EVERONE
I to wonder why What I have has to be catorgorized in order to be legitimate. Gee I guess if it doesn't have a name it must not be real!
I wonder if the diease has changed me or has it just changed all those around me. I am the same person but now no one wants to come by say hi or have anything to do with me. While the only change I have really undergone is the inability to walk you would think I have grown 3 heads and all of those are covered with warts with hairs growng out of them!
It's scary how much these diseases have a more profound effect on those around us than it does for us - sure, I have things that don't work, but I work through it; people around me see me struggling, and although they can help me with whatever task I'm working on, they can't do anything for ME, and it makes them feel rather helpless. And that's why I think a lot of people just choose to stay away. It's a darn shame.
Interesting topic here - I just started having strange pains in my right forearm that have been causing weakness. Only in the last two days. I had to rush to set a glass of water down before I dropped it when one hit the other day. I'm going to get a massage tomorrow, and I will instruct my therapist to work my forearms a lot so as to make sure that's not the issue. Will advise further as new information becomes available. :)
We all know there are days and then there are DAYS! Lately I have dealt with increased pain and weakness. The pump does a great job and it's days like these I am glad I'm not relying on the oral meds. I've had those days and I don't miss them. I keep saying the pump isn't a cure, just an equalizer.
I know this sounds like the beginning of a bad joke, but I really -can't- remember if I've mentioned my really bad memory. It has gone from bad to worse. I had a day, about three years ago, when I awoke with roughly five years of my memory gone. Not a moment in there to remember. I've been worked-up by the "best in their field" and they must be, they said they were.
Since then my short-term memory has become worse. I can't remember most of the day before or even earlier in the day. It's not an always thing, just becoming more frequently. It can be a real embarrassment not to mention frustrating.
I am interested in whether the massage made a difference.
For that matter, I have wondered for quite some time if a therapeutic massage would be, well, therapeutic. My reduced mobility has my muscles sore. I need them worked and since I can't work them the way I use to I am wondering if a massage would help at all.
Has anybody had any experience with this time of passive PT? Can it help the neuropathy? More important, I suppose, can it make matters worse?
G'night,
I have never heard of an instance where massage therapy has made things worse for MS patients. I firmly believe that unless you have a total dolt working on you, you will have a very positive experience. And yes, oftentimes I experience improved neurotransmission for a period of time after the massage. I say go for it if you have it within your means. And I know of what you speak with sore muscles that are sore because you can't work them the way you'd like to. Go give it a shot! Report back and let us know how you're doing.
Thanks! I have had it on the calendar and look forward to it.
fretlessman71 said: "I firmly believe that unless you have a total dolt working on you, you will have a very positive experience."
You haven't met a few of my PTs. <grin> I have had some great PTs but then there is the odd one or two who just make you scratch your head and wonder...what ARE they thinking??
The last time I met with a PT I was needing completely passive therapy. It is odd being instructed NOT to push, bend, resist. Unfortunately I still responded poorly to it but that time it had nothing to do with the PT as she did a great job. It was just a bad time for me. One of those MS moments.
I was thinking recently of the day I went out and bought my first wheelchair. I was clueless about the whole thing and didn't want to be there. A friend took me shopping for one and I couldn't bring myself to even sit in one. I finally chose one, paid for it and set a delivery date (they were out of stock on that chair...could that have anything to do with why I chose that model? Hmmm).
I was very fortunate in that it was a good fit for me. Things could have turned out much worse.
I suppose there are always those moments, those "firsts" that stick in our minds. It just seems I continue to gather these MS firsts even after all these years. I guess that's why they call it "progressive."
Anyway, I look forward to a positive experience with the massage therapy.
Remember that a physical therapist isn't always the best person to administer massage therapy. And some of them are downright sadistic. Did you find a Certified Massage Therapist to try?
fretlessman71 asked: "Did you find a Certified Massage Therapist to try?"
Yes, I did. Having run the gamut of PTs I knew enough not to use them as a masseuse. If I had a relationship with a good PT out here then I might. I don't so I am not going to put myself at risk. In the past I've put myself in the wrong hands too many times.
Thanks!
My mom is 62 years old and was diagnosed with MS about 16 years ago. For the most part she has lived a very normal life with a few episodes here and there. Lately my mom has been experiencing electrical shocks that start in her head and run through her body. She is in extreme pain and sometimes her hands and legs stop moving. She has been to the doctor numerous times, and the doctors are telling her that she has symptoms of migraines and it has nothing to do with MS. NONE of the meds they put her on work ( I really don't think she has migraines at all!) She sits at home all day because movement brings on these electrical shocks- she is afraid to move a lot because the pain is so bad. If this keeps going on, I know this is going to kill her because of the stress. I was just wondering if anyone else had these pains because we need help here!
There's at least one person here who has complained of MS related "shocks" going down their arms. It's not the first time I've heard of it. If I were you, or your mom, I would get a 2nd opinion. Do not pass GO, Do not collect $200, go STRAIGHT to the phone book and set up a separate appointment. Better yet, see if you can find the MS Society near you and find a doctor that people have had good luck with. Keep us posted on your progress!
