Spinal Taps SUCK!!

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Gingerlovedalejr
Regular Member


Date Joined Jul 2006
Total Posts : 56
   Posted 7/19/2006 10:19 PM (GMT -6)   
Hello</FONT>
<b>

[color=#ff0000>I'm]

<FONT color=#ff0000>


</b> that, I just needed to vent [img]/community/emoticons/smile.gif[/img]



[color=#0000ff>

<FONT>My symptoms are:




When I reach for things I can feel electric shocks go through my hands(not everytime but happens quite a bit)



* Fatigue is by far the worst thing so far. It's the reason I have been to probably 17 doctors in two years. I was told for sure just by looking at me that I had lupus because of the purplish rash on my legs and arms but then test came back negative(this was actually by a top rheumy)

I wake up exhausted but then feel pretty good. Around 10ish I am slowly drifting off. By the time I get off work I am so exhausted that I hit the couch when I get home. Also when I come back from lunch is when it hits really hard because of this texas heat. I get flu-like symptoms and whatfeels like all my joints hurt.



* I am very shaky at times and tend to drop everything( drink, keys, purse, grocey bags)



*My legs are extremely stiff. I have buring pain most of the time . My knee at times does not feel like it could possibly bend.



I hear that people have the electric type feeling down their back but I have something totally different. Mine feels like something is traveling down my spine. I actually thought this was pretty normal until my friends told me this in fact was not normal lol.



I've always had bladder problems since I was pregnant for the 1st time. My bladder problems are more from not being able to begin or not emptying it completely hence bladder infections from this. I probably have 6 or 7 infections a year.

*TWo doctors actually told me this ....I have no cold/hot sensations on my left side of entire body. I can't feel a pin prick or vibration. I never ever get numb though and I thought that was the "hallmark" of this disease....Is that wrong????



My spinal results have not came back as of yet...It's due back in two days. Is it sad to want to have something to validate the fact that you feel like crap. My MRI showed 9 lesions in white matter left frontal side which the dr said this was not the "typical" spot for MS to show up but that MS is not exactly typical in anything it does. I had a previous one that showed 2 spots 5 months ago but the doctor said it was probably caused from high blood pressure(which I have low blood pressure all the time) or diabetes(never had this either) ......... I just wonder why it would go from 2 to 9, I would think that has to mean something but who knows anymore.





I guess at the end of the day, I just want to be a mother to my boys and be back to me if not all of me I will take half [img]/community/emoticons/smile.gif[/img]



I'm sorry this is so wordy. I'm not usually this talkactive but everything's been weighing down and I don't really have anyone to talk to. I would really appreciate some feedback if you could spare some....and maybe either tell me NO this isn't the typical symptoms or yeah it could be.



Please email me


so that way I could respond back quicker..

Thanks a bunch for listening to all this!



whewwww I feel better already

Post Edited By Moderator (Kimber) : 7/20/2006 4:05:47 PM (GMT-6)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/20/2006 7:02 AM (GMT -6)   

Here is a small rant from me: If your statement about going to 17 doctors in 2 years is true, WHY????  You really are doing yourself a disservice, running from doctor to doctor.  You need to find ONE doctor that you trust, and keep returning to him (or her) with new symptoms, or symptoms that return, to get answers.

Many diseases, some neurological in nature, some metabolic in nature, "look alike" from the outside. That is, have similar symptoms, behave in similar ways.  It often takes time, and tracking a patient *over time*, to see what develops, to see if there are patterns of symptoms happening, to see if things change, or worsen, or sometimes improve at different times.  If you go to doctor to doctor -- and 17 times! -- none of them have an opportunity to serve you well. 

I know we're a society that wants "instant answers", and "quick fixes". By now surely you understand that whatever it is that is ailing you isn't going to be fixed quickly. And may not be fixed at all. You may have a chronic illness that is treatable, but not fixable.  You're going to have to develop a huge "patience bank", and just wait and watch and see what happens over time.

I'm done with my rant. eyes

On to your questions.

Electric shocks:  If you're experiencing L'ehermittes sign - -it's pretty common with MS (and other neurological disorders), it can present itself in a variety of ways. The shock usuall starts in the neck, and travels through the shoulder, sometimes down the back and butt,  sometimes even down the legs. (You talk about it "down your spine" and others talk about it "down their back" - -I think they're talking about the same relative thing.) And it can occur in the arms.  But you'd want to be sure that there isn't some sort of nerve compression happening in your neck that is causing it -- as that can cause the shocks if they primarily occur in your arms.

Purple spots on your legs: The doctor was correct to check for lupus, as that sometimes is an early sign. But if you've gone through all the testing, two things can be the result: You don't have lupus. Or you do, but it was too early to find it when you underwent that first testing.  But given you've not described any other lupus-like symptoms here, perhaps the diagnosis of "not lupus" was correct.  But again, this is one of those things that may develop *over time*, but if you've gone to other doctors since that first test, you'd have to be tested all over again.

Fatigue: Fatigue such as you describe is very common with MS (and with some other neurological problems.)  There are some meds that help some people with it.  Generally it is one of the main reasons why people end up having to quit their job, or greatly reduce their job or family expectations.  It can creep up on you at unexpected times, too. And indeed, heat can cause it - -and other neurological symptoms, to worsen.

The shakiness:  Could be related to MS. But it could ALSO be related to problems with your thyroid. Have you been tested for either an overactive or underactive thyroid?  Or diabetes? (Which also can cause the purple discoloration in your legs).  The drop or sudden rise in blood sugars can cause those kinds of problems.

Bladder problems: Are you certain that you've had *infections* several times a year -- or that you *think* you have an infection (because you can't pee normally), and so go to the doctor?  Childbirth can affect a woman's bladder in negative ways. But you also could be experiencing a "neurogenic bladder" -- a bladder affected by your nervous system not operating properly. The common symptom is either an inability to pee, or a sense of having to pee immediately after having tried to do it, or bladder incontinence -- a sudden uncontrollable urge to pee, and you wet yourself. Or a combination thereof.  The bladder isn't infected -- that is, when tests are run there is no infection -- just that it doesn't work properly.

Not having hot/cold sensations on one side: Well, obviously this is not "normal", or two doctors wouldn't have brought it to your attention!  There is no "hallmark" of MS symptoms. It varies for each of us, and often in the same person.  Some folks experience the loss of hot/cold sensation as numbness; others don't feel "numb", but also cannot sense temperature changes.

Increase in lesions:  If indeed it is MS, then that's pretty typical. MS is a *progressive* disease, meaning it worsens over time. More lesions mean progression, or worsening.

NOTE though: there are lots of reasons for lesions to appear on an MRI. Again, a doctor likes to watch a patient over time, particularly one where a few lesions have appeared, and some symptoms. And then he'll do another MRI in 6 months or a year, and see if there is progression.  This helps narrow the focus for him, and gets you closer to a diagnosis.

You state you've "never had diabetes" -- presumably one of those 17 doctors tested you for that? And you state you have "low blood pressure" -- have you ever taken your blood pressure when you've had those shaky episodes?  That might be helpful information for your "new" neuro to know about.

Come back and let us know what the "new" neuro tells you, when you see him next.

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 7/20/2006 4:22 PM (GMT -6)   
Hi Ginger,

My apologies, I had edited out your email address in your post and it seemed to have messed up your intial comments sad For your safety we try to avoid putting email addresses or personal contact information in posts directly but you can place it in the control panel if you like for others to contact you that way.

From what you are describing it sounds like it could be MS, but as Uppity has said the process can take a long time in some cases and there are many things that need to be ruled out. Hang in there and good luck with the new neuro. We have quite a few in limbo like yourself so know that you are not alone! Please come back when you get the results and let us know how you are doing. In the meantime if you have any additional questions or just need to vent please feel free to do so.

Kimber
 
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Gingerlovedalejr
Regular Member


Date Joined Jul 2006
Total Posts : 56
   Posted 7/21/2006 1:34 AM (GMT -6)   
Thanks for responding to my post.
 
I was mucho grouchy last night so my post seemed probably a little over the top. I of course, probably have not been to 17 doctors literally. I have been to several though. I went first to PCP which cannot treat a lot of the things thats going on or either does not have the test or the ability to know about the specifics of certain illnesses so therefore I was sent to a neuro....He said that my "bright spots" were not specific and was caused from something else than MS which could be HBD or diabetes. I find it strange that he would state this would be caused from something like that when I HAVE never had any one of these and he received all the test reports when he gave me this answer so he was well aware I did not have this. I stuck it out with him for several, several months with no chance of finding out anything because he didn't see a reason to look any further. I started developing different symptoms as far as the purplish rash on legs and arms and joint pain. I knew from my sister of a Rheumy that was very awesome at what he does.
 
When I went for my appointment, he pretty much said I was looking at moderate case of lupus and immediately put me on steriods because he wanted to slow my immune system down before anything got worse. I also did several blood test that same day. Two weeks later, I called for results and the nurse said everything was normal. So When I did go back for follow up. He said without some abnormality in test results then all he could call it was "utcd" which pretty much means you have no diagnosis. He said he wanted me to go find another neuro doctor to find out why some of my symptoms suggested that this also could be neurological. He basically wanted to rule out MS..........
 
SO this leads me to the "new" neuro that did find 9 lesions in white matter compared to the 2 in previous MRI so he said just to completely rule it out. He also told me I had cerebral Tonsillar....of 5mm but that it was something I was born with and wasn't too sure this would cause the symptoms. Two weeks later I had spinal tap. Today I got the results...He called me and said " The test that we ran for MS is negative" and when I replied "ok, so now that is ruled out completely, what next?" He said "that's it....have a great day"
I thought that was extremely rude. He is from another country and it probably just very use to being direct but as understanding as I try to be. I still don't like the way this is sitting with me. I wanted to call back and ask what I could do next...but decided against it.
 
I am above all willing to try anything. Whether this be exercising all the time, taking a bucket load of medicine, get a thousand test, or just move on if they can't help me.  I would "stick" it out with any doctor aslong as they will stick it out with me. I have no tolerance for someone who belittles me though. I get complicated and honestly they don't know what else to do so they push me on to the next one. So how exactly could I stop being a doctor jumper :)
 

Gingerlovedalejr
Regular Member


Date Joined Jul 2006
Total Posts : 56
   Posted 7/21/2006 2:03 AM (GMT -6)   
Sorry, I didn't get to answers some of the questions you ask me.

I do get a lot of bladder infections that are confirmed. At this timeI get them the burning and more pronounced feverish feeling usually is a telltale sign for me ....I get at least 4 a year. I
just considered this the norm for me, but there is defintely times where I feel just like I normally do with the other ones and will not have an infection, just irriation from what I'm told.

I have been tested over and over again for diabetes, I did have abnormal test on thyroid which shown that I was slightly overactive but nothing of concern as doctor tells me. Some times it will come back as slightly overactive and then other times normal. My T4 and antibody test are always normal as well.

With the low blood pressure thing. It is a very weird situation for me. When I feel the worst my blood pressure is actually normal and when I feel ok, that's when it usually is low, but never low enough for anyone to be concerned about this. It usually runs 90-60 at the lowest I think was 85-55. My pulse rate is always fast though but they tell me with everything else normal, then this is probably just normally higher for me. I do agree with you on the sugar level...which of course also was checked because I sometimes think maybe I shake so bad because I could possibly have low blood sugar, this is especially in the morning time.

I actually take medicine for Fatigue also. I took provigil 200 mg for a while but I didn't it find it very effective at least for me. Fatigue is defintely the most severe of all my symptoms. The PCP that I have has given me a trial of amanadine(sp) but with the spinal tap problems I haven't actually taken it yet. Now that MS is ruled out, I'm not sure what this would actually do for the fatigue since the studies I've read said it has shown to only be effective in fatigue in MS.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/21/2006 4:51 AM (GMT -6)   

You were quite right to ask the doctor (and I'm paraphrasing here), "...well, if not MS, then what? And what next?"  I'm sorry he brushed you off.

Have you been back to your primary? That's probably what I'd do. First make sure that any test results from the rheumatologist and both neuros have been sent to your primary. It may be that you'll have to sign paperwork to have them sent. Or get the results yourself, and take them to your primary.  And then ask that same question:  "OK, here are all the test results from the specialists. They claim I don't have lupus or MS...but I'm still experiencing these things.  Now what?"  You've indicated that perhaps you did this -- but with the results now in from your spinal, I'd probably try that again.

It's not that a primary doesn't know about these other things and can't treat  you. But it true that they'll often want confirmation of their suspicions from a specialist.  Once they have that, and have talked with the specialty about how to proceed, they're quite able to do so.  I've not seen a neurologist in over 12 years, for example. My primary deals with anything related to any ailment I have, including MS (I've had MS for at least 23 years...)

As for the fatigue meds, not all of them work for everyone.  I've not found them to be particularly helpful. But they can be prescribed for people who do not have MS, and be effective for some.  Amantadine is one of the more "benign" drugs -- that is, few side effects, few long term effects, so it might be worth trying, while you're waiting for something else to occur.

If you're continuing to have bladder problems (and it really isn't usual or normal for people, even women, to have that many bladder infetions) you may need to see a urologist to see what is going on with that. Whatever the cause -- if it is "mechanical" (something injured through childbirth) or neurological, there are meds that can help with that.  Recurrent infection of any sort in the body can cause strange symptoms to appear in other areas.  And bladder infections, UTI's, can be notoriously hard to treat.

Bottom line: I'd head back to the primary, test results in hand, and demand, "OK then, what's next?"  If he really does refuse to treat you, or doesn't have any good suggestions for next steps, then I'd be looking for a new primary.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 7/21/2006 7:12 AM (GMT -6)   
Hi Ginger,
There is a condition called Autonomic Neuropathy that causes low blood pressure, hypoglycemia, bladder and bowel troubles and nausea/vomiting & some other things.  It is caused by the nerves to the major organs being interrupted for some reason.  It can go along with other diseases and they really don't know what causes it.  I have a dear friend who has this along with her MS.
 
Ask your primary about it, I'm not sure what kind of testing it involves and the only cure is symptomatic relief.(Shucks!)  I have MS and do not have a positive LP. Many folks on this site have said that thier LP's were negative.  I'm sorry your doc was so rude.  He certainly isn't Mr.Happy!  I hope you find the right doc who can get you to the proper diagnosis. 
 
Please keep us posted.  Have a great day!
Michelle ><>
 A true friend is like support to a leaning wall.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/21/2006 9:50 AM (GMT -6)   
A primary cause of autonomic neuropathy is diabetes. MS lesions can cause this as well, but without a diagnosis of MS, the doctor may first re-test for diabetes.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gingerlovedalejr
Regular Member


Date Joined Jul 2006
Total Posts : 56
   Posted 7/21/2006 4:27 PM (GMT -6)   
Your're right! I need to get this either completely ruled out and go from there. I thought that was what I was trying to do but in the end this has been far more confusing to me than anything was before.

I did end up calling Rheumy yesterday after talking with "Mr pissy pants" and the PA there which is wonderful about everything told me the doctor was out but once I went over the short version of the story and told her the symptoms that I was still experiencing and the fact that My lesions have increased from 2 to 9 which may or may not be significant but I must try a little harder and like you said be patient. She told me she would need to speak with the dr and see what he wanted to do. She called me back within 5 minutes and told me to fax over all the results from MRI and spinal tap and then once this gets reviewed he will contact me to see what step or what direction I would need to go in. They also said they could get the results from MRI from one neuro and compare to the results of the other one and see exactly what has changed and talk with Radiologist from both hospitals. So hopefully, this will turn out to be one step closer to figure out what's going on.

Honestly, if I found out yesterday I did in fact have MS...would it change how I feel or what pain I have today? No, it wouldn't....would it be somehow more validated? Yes, I think so.

Autonomic Neuropathy-- That is actually interesting but it sounds kind of like "Chronic fatigue sydrome" which pretty much means based on not finding anything else then this will be what you ultimately get diagnosed with because nothing else can explain it. I had read about it in Chronic fatigue sydrome books and it does seem to make sense but I'm not sure this would actually be a "medical condition" or maybe I am wrong about it. Isn't it ususally caused from something else going on that you would have these symptoms? Please let me know if I'm incorrect about it though.

My PCP that I see now is truly compassionate, and doesn't make me feel like a retard when I talk to him about my symptoms which is truly all I could ask for at this time, but for the other PCP in the past have jumped at every chance to send me to a "specialist" because honestly most will test CBC and if all is well with that then they can't help you anymore.....again, not all like this but quite a few.

Uppitycats- You seem quite intelligent about a lot of different problems or disorders. Have you had MS for a long time now? Or is it just from listening to all of our "problems" you have gathered information? I do find that your information is really honest, and direct. Which I can completely appreciate. I guess I am more of a "give me the facts" kind of person as you seem to be as well. So I defintely look forward to your insight on certain issues :)

As for the spinal tap! I know that negative spinal taps can happen, but isn't that very, very rare? The test is 90% positive normally if you have MS, right?

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/21/2006 4:45 PM (GMT -6)   

Autonomic neuropathy is *not* one of those "catch-all" diagnoses. For that matter, chronic fatigue syndrome isn't either, depending on the doctor doing the prescribing.

Autonomic neuropathy refers to problems with the peripheral nervous system -- the nerves in your extremities, and away from the "central nervous system", which is what MS is (a disorder of the central nervous system). Yes, it does describe symptoms, usually pointing to a different disorder -- the most common being diabetes, but a person with MS can have autonomic neuropathy if there is a lesion (or lesions) in the brain stem. And there are other disorders that can present themselves as autonomic neuropathy.

Go to any of the search engines (I generally use google) and type in autonomic neuropathy and you'll find lots of information about it.

Yes, I've had MS for a long time -- 23 years since diagnosis, probably had it for over 30 years, but back then, didn't go to the doctor until I was really getting significantly impaired.  And I read a lot, try to learn as much as I can,

and yes, I'm straightforward. Some would say blunt. I've even been called rude.  But I will always try to give you correct information, or as correct as I know it to be, and if I don't know, I'll either say that, or not enter the thread at all.

Spinal tap -- yes, generally the spinal tap will be positive..but I have heard of several folks diagnosed with MS who have a negative spinal tap.  In fact, some physicians don't even do a tap anymore, and rely entirely on an MRI.  From what I've seen of patients on this and other boards -- often MS is missed if a spinal tap isn't done, and the results used -- in conjunction with other signs and symptoms, to diagnose MS.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gingerlovedalejr
Regular Member


Date Joined Jul 2006
Total Posts : 56
   Posted 7/21/2006 5:22 PM (GMT -6)   
Thanks for explaining that for me. I will look it up and see what I can find.

A lot of people cannot handle direct personalities. To be completely honest when I read the first reply to my post, I first thought that it was rude....but then I read it again and found it not really rude but like I said very direct. I saw some of the other post that you have replied to and I always thought you sounded very educated about some issues a lot of us have. The fact is that which you have put in other post is not everything that goes wrong with you is caused from MS. Even though some have MS....they are not suddenly unable to get a normal tension headache or the flu without automatically assuming their MS has gotten worse or is flaring up. I know that things like this can and do pop up when you have flares I'm sure but in any case you probably get my point.

I try to research a lot as well but in a way that can be a bad thing because when you feel like crap everything sounds similiar to your situation and before you know it you have "new"symptoms because something you read said a certain symptom was assoicated with this illness. I don't want to be "that" girl.

I was told well over a year ago that I was leaning towards Chronic Fatigue. I have done all kinds of research on this. I do feel though that it is so general that "fatigue" can result from so many things. A well known doctor said typically 40% will eventually show signs for the disease that was causing the problem to begin with. Whether that's MS or Lupus or even cancer. I just never could sit comfortable with " It's Chronic Fatigue Sydrome"....I don't ever mention this to anyone because before when I did I would have people looking at me like I was a nut and some even said they were so tired lately, that they must have chronic fatigue as well. I see so many people on web pages that actually have this but in my real world, the only illness I see a lot of is Fibro and CFS is never mentioned.

Just a quick note to a reply I saw earlier from you about a old medical book that said MS was Chronic, progressive, and then finally death will result. I actually have the same book......It was just kind of funny that was mentioned. That book can scare the living crap out of you. You could have a normal headache but the book will point you in the direction of brain tumor or cancer. I'm glad that since has been revised, I'm sure it's saved many trips to the E.R lol
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