AnonymousSeptember 2, 2009 at 10:10 am
Hi everyone – have not posted in a while.
Over the last few months I’ve been able to control my fears at a manageable level and life has been good, even with progressing symptoms. As a quick update, my level of weakness has progressed some, muscle shaking increased with exertion, and bothersome after exertion. I perceive that muscle slimming has continued in limbs and shoulders. Fine motor skills are off some, and balance is still affected to some degree but not noticeable to anyone. Doubt I have any clinical weakness yet – I am way past self-testing. Won’t even mention twitching other than to say it has increased but it is really the least of my concerns.
I am still highly functional – thank God for that. BTW this has been slowly progressing for about 7 years.
Here is possibly a new symptom – some minor burning sensations in my hands, lower arms, and legs. It is not constant, and comes and goes, but as I sit here and type this the upper part of my legs feel like a mild sunburn. This sensation can come and go, and can be accompanied or independent with some minor tingling.
Also, all of my symptoms have been symmetric – no one limb is better or worse than the other that I can perceive. I keep trying to convince myself it is CIDP (although would not wish it on anyone either) but of course it could be many things at this point. Still concerned about ALS, but try not to dwell on it.
I guess I just needed to put it down in writing and am open for any perspective on the “sensory” deal. Did anyone have very few sensory issues with symmetric motor symptoms?
God bless and thanks for reading.
September 2, 2009 at 11:40 am
Kevin gets a burning sensation. I agree with your feeling that it is cidp. Why the delay on ivig? It would seem that if it were ALS, you would not be able to be highly functional for 7 years. Any possibility of diabetes or insulin resistance? Regarding the tingling? Diabetic neuropathy. Since you have not had any ivig or any other treatments, maybe if you not already had them, it would be a good idea for the doc to run the basic blood work for lupus, ms, etc (ana) as well, do you have any baseline ncv/emg to compare to so you can see if there is a decline? Best wishes.
Dawn Kevies mom
AnonymousSeptember 2, 2009 at 11:52 am
Thanks for your reply.
Several EMGs over the years including one at Mayo a few years ago and one at a major clinic / university in Feb.
Always have been clean EMG’s.
Had an annual physical yesterday and all of my normal bloodwork showed no issues. I have had more extensive bloodwork in the past that always came up clean.
AnonymousSeptember 3, 2009 at 11:50 am
Have you had an MRI? How about a spinal tap? Has anyone ordered an ANA test? What about testing for Charcot-Marie Tooth?
It would seem to me that after having to deal with your symptoms for 7 years that some dr would find some sort of diagnosis.
Maybe you can find a neurologist who will treat you empirically with IVIG? That means they treat you without a firm diagnosis just to see if it helps you. If it helps then great & if it doesn’t then, chances are, it’s not autoimmune.
AnonymousSeptember 3, 2009 at 3:01 pm
[QUOTE=ktmj]Hi everyone – have not posted in a while.Here is possibly a new symptom – some minor burning sensations in my hands, lower arms, and legs. It is not constant, and comes and goes, but as I sit here and type this the upper part of my legs feel like a mild sunburn. This sensation can come and go, and can be accompanied or independent with some minor tingling.God bless and thanks for reading.[/QUOTE]
[B][FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]My very first symptom was the burning in my thighs. Rather like the “exercise burn” that happens. I can see it being explained as a mild sunburn, though deeper. Mine is constant. Pinpricks and tingling and cattle prod shock come and go in other areas.[/COLOR][/SIZE][/FONT][/B]
AnonymousSeptember 3, 2009 at 3:25 pm
I have a burning sensation in my legs that comes and goes. It was one of the first indications that something was wrong along with discoloration. There is also a strong burning sensation anytime I scrape or brush my leg against something. Neurontin [sp?] seems to take care of the burning sensation in the legs at night.
AnonymousSeptember 4, 2009 at 12:56 am
Several things you mentioned follw my case history. I was diagnosed with a Peripheral neuropathy in 1989. Symptoms were barely detectable, but were identifiable. The Nuero gave me the same diagnosis you got. Stress, take care of yourself, call me if it gets worse, althougfh I don’t expect it will. Save your money on Doctors and relax. In other words it is in your head. Butu really, he didn’t know and would not say so. His ego got in the way. He just could not say “I Don’t Know.”
Anyway I waited, had a couple of more tests, and finally got diagnosed 10 years later in 1999. I know everybody is different, and Peripheral Neuropathies differ and so on and so forth. BUT……
If you have a neuropathy it means something is wrong. It will probably not go away. There is treatment for many PN’s. I went through this period when I was in my “invincible” 30’s. Now I am disabled in my 50’s.
I don’t mean to scare you, but I would try to get a diagnosis. Many PN’s are treatable. If it is a nasty one, the earlier is better. Any neuro worth his salt will listen to you and try to figure it out. You owe it to your loved ones.
e-mail me if you need anything.
AnonymousSeptember 4, 2009 at 1:16 pm
Thanks everyone for the support. It is obvious most of you know that you have to be your own best advocate in a situation like this. To be fair to most docs, things do have to be seen or observed objectively for them to want to probe deeper, but I know something is not right and just want to scream at them sometimes.
I have scheduled another appt at my neuromuscular clinic Sep 15th (surprised I got in that early). Will update with anything relevant.
AnonymousSeptember 4, 2009 at 7:26 pm
The more you know, the better you can understand what all is going on with you.
Here is a site that is all about the multitudes of neuro issues it could be:
[url]http://neuromuscular.wustl.edu/alfindex.htm[url] Hope I did that right?
The page you should go to is just the index! But, each condition includes a very brief synapsis of special diagnostic tests for THAT condition. At the top of this page, is an outline of testing done for various conditions.
Another site I like is: [url]http://www.aafp.org/afp/980215ap/poncelet.html[url] Which outlines the various twists and turns [as well as tests] it can take to get a diagnosis. There are more if you want them, feel free to PM me.
From my own personal experience the one big THING is fear! Fear I will get worse…etc. and then what? In my own case it took me two other neuros to overide the first neuro’s diagnosis of ‘just PN’!
As for testing? I recall I’ve had several of both types of nerve conduction tests, the MRI’s of the neck and spine, spinal tap [not so bad if you KNOW what it entails?] and heaps plus of blood work!
Now to more practical matters…were you cold during any of your nerve conduction tests? Being cold can distort results to read ”normal”-that wasn’t my problem as my feet tend to turn BLUE w/cold. Also nerve tests early on tend to read either normal sort of ‘off’, but not enough to worry about. Thus tests every 3-6 months at times are done to ‘track’ progression of problems.
Another question, if I may? did you have a bad cold or the like before you got numbness? Were you on antibiotics for any length of time before problems? Some of these can and do cause numbness and more. And, have you undergone glucose tolerance tests [the longer kind-over 2-3 hours?] as diabetes can create havoc on the systems.
Lastly? THAT FEAR FACTOR!!!!!!! It is a biggie for many, myself included! I have had too many instances in this year alone which have turned my arms and legs into total, non-functioning jello at times [with some dire consequences] – The key here is to PLAN ahead where you can go so you don’t fall, and if you do? You can get help rite away as needed. Best thing? IS not to fall. A good example is that while I can drive, I no longer do it in rush hour times for doc appts. I’ve found that either foot will go ‘dead’ at a very dangerous moment, and I avoid that at all costs.
Again, the more you learn the better you can deal with it all. You are better able to understand what is happening to you and why – it’s complicated chemistry but you can find some web sites to clue you into the processes.
Once there? The next issue is treatments available. I am disappointed in the Mayo in that they are more prone to treat with steroids [and their whole set of side-effects/consequences] than other centers such as in New York City or Baltimore. But that is just my opinion.
When I had my onset, it took me 14 months from onset, three neurologists and a heap of tests that blur in the mind at times, until diagnosis. I did it while I could, fearing the worst and trying to prevent that. It was my own ‘gut instinct’ that kept telling me that this is getting worse! Gotta stop it! For me treatments help immensely! I was very LUCKY! And still am overall.
There are many here far more brave than I am! Learn from them please.
AnonymousSeptember 7, 2009 at 10:52 pm
The article written by the neuromuscular group at wustl. is very very good. One of the author’s is my primary neuro. and he really knows his buisiness.
Regarding the burning in your legs I get that as well sometimes……it always seems to be my left thigh and it will start burning so badly that even contact with soft cotton makes me almost want to cry…Dr. says that it’s caused by sensory nerve damage caused by the CIDP and the options are to start taking one of the nerve pain pills or just take an otc pain pill and live with it…….so far I’ve just lived with it but it can be tough.
AnonymousSeptember 8, 2009 at 8:42 am
Thanks everyone again. I don’t have any numbness except sometimes after quite a bit of activity I have some minor loss of sensation around the top of my shins.
My last NCV/EMG was done at a teaching university hospital and ALS clinic, and was normal (in Feb).
Again, I am pretty darn functional and have had a pretty slow progression of SOMETHING, with only mild sensory issues (mainly the burning and tingling sometimes).
I’m gonna try and push the doc harder this time (and I am not intimidated by them at all). It’s so easy for them to say “you look normal and healthy to me”.
AnonymousSeptember 8, 2009 at 5:22 pm
You look normal? IS there something wrong here? I’d have thought they’d want to TEST you some more just to be sure!
Nerve tests….Word of experience from me? And, from what I’ve learned from others…
Tests can show NORMAL the first 3 months or so, but after that? Things can and often go downhill. Ask for a 6 month follow-up test for the docs to compare things to.
I know I showed ‘normal’ a month after onset, while the rest of me could barely walk and function?, well, durn it I was ‘normal’! Later on tho, things did show their toll in ‘recordable’ ways. These records are KEY to your ultimate diagnosis and be sure to [IF you can] get copies of these reports for your OWN files.
Ultimately? IF you can get copies of all the tests and get a second opinion? It’d be a lot cheaper than many alternatives! Or, even a third or more if needed.
As for the ‘numbness’? It can come on suddenly, and just as soon go away. I hate it when it happens when I drive tho… then that gets scary. Be super cautious about it all. Do NOT take any situation driving for granted.
Go with YOUR INSTINCTS that something is not right!
Our bodies tell us what we often have to teach ourselves how to describe. It’s not easy, but then? Take it all as a self-defensive action! To keep yourself as well as possible.
Hope and lots of hearts go with you, know that
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