A newbie with questions
AnonymousJanuary 26, 2007 at 4:09 pm
I’ve spent the last couple of days reading the posts on here and feel terribly grateful to have found this forum. It’s a relief to find a place where people actually know about GBS. If you’ll bear with me, I have a somewhat lengthy post with some questions, but I don’t have anyone to help with this, so your insights would be very helpful.
I’m 33 and had GBS when I was 3 (that lucky 1976 year). I was in the hospital for a month, paralyzed up to my waist with limited upper body movement. I then spent a year in PT (thank goodness I can’t remember much other than my screaming. I think the therapist wore earplugs..lol) By age 6, I was off and running, playing competitive sports through college.
About 8 years ago, I started having knee trouble and tenderness in my thigh muscles. I chalked it up to sports injuries. 5 years ago, I started having bouts of restricted breathing (rare, 1 or 2x a year), tingling/numbing in my hands frequently(particularly at night) and my feet hurt a lot. I saw a neurologist, who performed a MRI and blood test and said there was nothing wrong with me so I ignored the issues. I worked as a retail manager, on my feet 8-9 hours a day, which will hurt anyone’s feet.
So, a couple of years ago, still having bouts of tingling/numbing, I fell off a ladder at work, injuring my neck and lower back. Had a brace on for a month, and was in PT for 8 months. I subsequently got a new desk job. Over the last two years, however, I’ve been increasingly worried about the variety of trouble I’m having. I’ve had increased pain my shoulders, elbows, knees (you get the picture, all the joints). I figured early on-set arthritis and the arthritis medication does seem to help manage the increasing pain. However, I have other difficulties that don’t seem to tie in with the arthritis.
That is, I’ve been experience a lot of muscle fatigue, especially in my legs and back. I don’t feel weak, necessarily, just tired when I try to use my muscles. I’ve gotten increasingly clumsy in my walking unless I concentrate, which is tiring. I get lot of muscle spasms and charley horses, even though I take vitamins in case it is a vitamin deficiency. The thing is, the pain and tiredness could logically be tired in to the arthritis and injury. But, the other issues of spasms, breathing trouble and tingling don’t seem connected.
So, my questions are this:
– is anyone else experiencing arthritis and GBS residual effects concurrently?
-is it likely all the symptoms are arthritic-related and not related to Post-GBS, or vice-versa?
-I live in LA, CA but have not had good experiences with the two neurologists I did see years back. I should note here that I was told growing up that there were no long-lasting effects to having GBS so I’m not sure if I mentioned having it to the neurologist. Can anyone offer a recommendation for a neurologist out here?
Thank you for taking the time to read this. I realize it’s lengthy and appreciate any suggestions you might have.
AnonymousJanuary 26, 2007 at 4:35 pm
Welcome, and I am glad you found the forum.
Firstly, as I’m sure you have read in all the posts, GBS residuals presents itself in so many different ways, and seems to affect quite a number of us decades later. Extreme fatigue, muscle weakness, breathing difficulties, pins and needles, spasms and so much more seems to be common post GBS symptoms. Unfortunately, so many of us have had the same experiences with specialists, and it can be extremely difficult to hear them say nothing is wrong, when most of us know our bodies so well.
I have spoken to people who have arthritis, along with lots of other illensses such as Fibromyalgia, MS, cancer etc, as well as post GBS symptoms, which of course makes things more complicated.
I am thankful that finally I was able to get some medication that did help me to a certain extent, and I have a better quality of life now. Like you, my post GBS symptoms didnt kick in badly until about 2 decades later, and I found, and still do, it difficult to come to terms with these effects after leading what I would call a [I]relatively[/I] healthy life after GBS.
Have you read the articles on post GBS? If you havent I will post them for you, or tell you where to look.
AnonymousJanuary 26, 2007 at 7:21 pm
Hi Becca, welcome and glad that you found us.
I am glad that Ali responded because I would of recommended talking to her about residuals since she also had GBS at a young age. Have you been diagnosed with Rheumatoid Arthritis?? About the same time I was diagnosed with CIDP 3 years ago I was also diagnosed with RA which is another Autoimmune Disease. Unfortunately once you have an Autoimmune Disease you will always have to be on the look out for more.
Jump right in, we are all here to help. If I can ever be of help feel free to email me or PM me. Take care.
AnonymousJanuary 26, 2007 at 8:17 pm
I live in Orange County, CA and I am in the process of being diagnosed with CIDP. I’m still walking but I need to use my arms to pull me up the stairs using the rails, my walking is off balance and I compensate by slowing way down and taking small steps. I’ve had tingling, pins and needles, deep muscle aches, finger tremors, and muscle spasms since last April 06. I only heard of CIDP and read about GBS 4 months ago.
In regards to your question about a good neuro in LA: I was referred to UCI medical center in Orange, where they are very much familiar with neuromuscular disorders. I’m seeing Dr. Taseen Mozaffar and awaiting tests of emg/ncv and a spinal tap next week. They do physical therapy there but its a little too far for me so I found an excellent site thanks to Doby48 [url]www.onbalance.com[/url] and patient facilities. There are several pt sites in CA and some in LA. I posted a reply on the CIDP site re: anybody else in San Diego, CA. I cut and pasted the following from Billt, Thanks Bill:
“Dr. Mozaffar at UCI is probably the top-level specialist in Orange County, he would be good for getting a diagnosis if you can get a referral to him. I also saw Dr. Graves at UCLA a few years ago and he is excellent, but quite a drive obviously. Additionally, my doctor sent me to see Dr. Bosch at Mayo Clinic Scottsdale for another set of expert eyes after I was having a really rough go several months back.”
Call UCLA or UCI and ask for an experience neuro closer to you. Keep asking around, I’m sure you’ll find the right one who has experience and knowledge.:)
Good health to you,
AnonymousJanuary 28, 2007 at 12:49 am
for all of your responses. Taryn, I’ll look into UCLA. I’m very fortunate to have incredible medical coverage and now that I know a little more about GBS and its after effects, I might be able to explain the symptoms a little better. I’m a little peeved that I didn’t find out, until last week when I found this board, that GBS could have lasting effects. For so long, I’ve been told the opposite.
I have read some of the articles referenced on here and other boards. But, most of them appear to be abstracts that require a subscription. If anyone should have some other articles, aside from the Dr. Parry and one other one I can’t recall right now, I’d be very interesting in reading them. Thanks.
It’s a sad sad fact that I don’t even have a primary physician. I usually just see the Dr at my Urgent Care Center, who is the one that’s been treating me for my arthritis. I suppose two years is long enough for me to have head my head stuck in the sand regarding this issue. My daily living is now significantly affected. I wonder, do the symptoms like muscle spasms and muscle fatigue, and other issues get worse without treatment?
In any case, I look forward to continue reading this board and being a part of the community here where people know what GBS is.
Thanks again for all of your responses.
AnonymousJanuary 28, 2007 at 6:09 am
Your story is in many ways similar to mine. I had GBS in 1984, when I was nine years old and I was told to leave this episode behind me and ‘live a normal life’. I did have residuals in arms and legs which made it clear that I wasn’t that ‘normal’ after all, but nevertheless I ignored pain and fatigue for many years, until I learned these were major symptoms of GBS. I learned it the hard way, because, like you, my symptoms have become worse over the past years.
Do fatigue and muscle spasms get worse if not treated? Yes! The most important treatment is rest, as you have probably found out yourself reading the posts and articles on this website. Even for those who don’t think GBS has affected them, rest is crucial because this disease has made the nervous system far more vulnerable to overexertion than it was.
I have found that many people in the medical field don’t have much knowledge of GBS (even neurologists), but hopefully you will get the right neurologist. In your case I think it is important that treatment isn’t aimed solely at your arthritis, because what’s good for your arthritis, can be the wrong approach for your GBS-related symptoms.
This forum helped me understand so much better what is going on with me. So you have come to the right place! Welcome!
AnonymousJanuary 28, 2007 at 3:04 pm
That’s exactly my concern. I have trouble enough explaining the two different set of symptoms, knowing one is arthiritis and the other is (well now I know) gbs-related. I am worried that treatment for the arthritis may aggravate my other difficulties. I read on another post, somewhere on here, that steriods such as Prednisone may worsen gbs-residual effects. I’ve been on prednisone a lot this year due to a variety of things: spider bite, elbow swelling, and some other events. Any chance taking Prednisone has caused the increase in muscle fatigue and spasms?
Eva, does the frequency of your symptoms vary? I was keeping a journal and notice that some problems, like restricted breathing, only happen 1-2 x a year. My muscle spasms occur mostly in the afternoon or at night a couple of times a week, while the muscle fatigue and soreness is present all the time. The tingling/numbing/burning in my fingers occurs a couple of times a month. I’m curious how often you experience difficulties, if you don’t mind me asking.
AnonymousJanuary 29, 2007 at 4:32 am
No, I don’t mind you asking me at all. As a matter of fact, it is great to share these things with someone who knows what I am talking about:).
Your description of your symptoms resembles mine. I have this constant fatigue and pain that always lingers in the background, and just to keep things from getting boring there are symptoms which pop up and then go away again, rather similar to what you describe. When I am really tired the pain gets worse and it feels as if very hot liquid is flowing through my body. And then there is the less predictable pain, like all of sudden I got this pressure in my eye, which turns out to be a combination of lack of tears and this sensible nervous system which makes it feel as if my eyeball has turned into a rough stone which is sucked back into my head. I also learned that you can’t always feel all the pain at once: one symptom seems to dominate the others, until it gives room to another symptom which was there all along, but you wouldn’t notice so much because there are a lot of things going on in your body at the same time. That makes it hard to describe what you are feeling to others.
Becca, I really hope you find a neurologist and a physical therapist in your area who can help you, but that may take some time. In the meantime I think it is a good idea to inform the doctor who treats your arthritis about all the things you found out here. If he is a good doctor, he will be open to your concerns. Take care.
AnonymousFebruary 10, 2007 at 1:23 pm
Ali, I would really appreciate knowing where and how to get the post GBS info you talk about. I am trying to get my story out there but haven’t figured out how yet. I was diagnosed and hospitalized on October 30, 06, so I am just 3 1/2 months into this any really want know what people feel and their meds, their pain and how to deal with this. You can e-mail me at [email]firstname.lastname@example.org[/email]. Thank you, Diane or erinsells
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