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LHEMPEN's Photo LHEMPEN Posts: 1,926
5/13/10 1:12 P

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I thought I had been through h** and back with three differnt neuro until my chiropracter found one in St. Louis MO at Missouri Baptist hosptial. He specializes in MS and was absolutely wonderful. My brain MRI, VEP, and LP were all normal..however an MRI of my spine showed a cervical lesion (1) and a spot of something (yes that was the clinical term" lower in my spine. By the time I had gotten to this neuro I felt totally fine (about 12-16 weeks) if you can at all bypass the LP please do. There is NO defintive test that can confirm MS..they just put pieces of the puzzle together and try to rule everything else out. There are so many things that can mimic MS but if you find a wonderful neuro like I did..he last words to me were, I would have never ordered an LP on you! I was very upset more then I was with the MS diagnoses..still pretty made about that actually!






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10/31/09 2:23 P

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I'm so sorry that your neurologist is leaving you with so much confusion right now. I was hoping that whatever's going on with you would be as straightforward as mine was when I was getting diagnosed. Since the advent of the MRI some people (like me) have been able to get more clear cut dignoses, but some people's diagnosis has not been nearly as "simple" as mine was. Since MRI's first started being used doctors have discovered that there are quite a few disorders that are not MS, but are very closely related to MS. Fibromyalgia is one of them and I do not know the names of any of the others.

So anyway, I'm glad that for the time being you are not going to need a spinal tap but I really do wish that you could have gotten a clear cut diagnosis because all of this can be so frustrating to deal with.

As strange as it sounds, vitamin D does appear to play a part in MS. People who have very low levels of vitamin D are more likely to develop MS than people whose vitamin D level is normal. If you want more information about this try going to mercola.com Dr. Mercola is much more concerned with natural modes of treatment than with using drugs to treat diseases. He's got information on his web site about MS, its link to vitamin D deficiency, and many other related topics.

Edited by: VALI_T at: 10/31/2009 (14:25)
There was much rejoicing!


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TONOZAR1's Photo TONOZAR1 Posts: 8
10/30/09 12:09 P

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Sorry if this is a bit scattered...

Results back but not sure how to take what is going on... Was told the doctor was very "intrigued" to see my results which kind of raised a red flag but when called in to talk to him was told my MRI looked good enough not to need a spinal tap YET but bloodwork came back with Vitamin D levels VERY low... have been put on very high dose steroids for a week to get rid of the headaches and spinal pain supposedly (funny though if a week of steroids can get ride of 3 years of constant head, neck and shoulder pain and what of the pains going on in my legs???) and Vitamin D supplements... with instructions to come in immediately if I have the same symptoms as before and an appointment for 3 months out still with the neurologist to "retest everything"... no explanation on that one even though I asked... didn't want to push too hard as hubby was nearly in tears with joy that I "don't have anything wrong"... Since he is one of the top Neurologists in the area it seems odd to follow up further with him instead of my regular doctor if it is only a vitamin imbalance doesn't it? Is there a relation between vitamin D deficiencies and MS or other neurological conditions that he would want to keep a watch for? Looking for opinions, points of view anything... I'm not unhappy with what he had to say but it almost feels like something is going unsaid like there isn't enough there for him to say for sure there is or isn't something there so he needs to keep watch but doesn't want to panic us and after several people telling me of multiple MRI's and tests over several years before a diagnosis came in I'm just wondering if its my own paranoia or if it seems like a real possibility... I think back to a couple weeks ago and how much pain I was in, not being able to stand, barely breath, no feeling in my feet and left leg and all the other crap all of which came on and disappeared within a few days and it doesn't seem possible that its vitamins like he is saying that could cause all that... the daily fatigue and stuff yes but not the rest... how would that be causing the tingles that move around even now or have caused me to have pain going down my right leg and no feeling in my left to the outside... when we asked he said it was possible but if the pain doesn't go away with the steroids and the vision, fatigue numbness etc over the next few weeks to months improve I'm to come in for more or if anything gets worse to come immediately to the office... I've already told him that this last bought was not the first??? I'm just so confused!!!

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10/28/09 7:01 P

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I'm glad that you were able to get the MRI and then the appointment so quickly after. I will warn you, however, that when my first neurologist looked at my MRI films he sent me across the street to the hospital for a spinal tap. That wasn't actually too bad....aside from the splitting headache I had for a full day afteward. I would advise you to premedicate with ibuprofen or Tylenol if you end up having to have one. (They're also referred to as lumbar punctures.) You can safely take twice the recommended dose of either ibuprofen or Tylenol....and I would suggest that you do it if you have to have a spinal tap. You won't regret it.

I'm really not trying to scare you or to encourage you to refuse a spinal tap if your doctor says that you need one. My spinal fluid results were the final piece in the puzzle that said "yes, Vali has MS" and I'm really glad that I had the spinal tap and got the correct diagnosis. But I will never, ever under any circumstances agree to have a second one done unless I'm about to die because that was the most incredibly awful and long lasting headache that I have ever had in my life.

There was much rejoicing!


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TONOZAR1's Photo TONOZAR1 Posts: 8
10/28/09 9:00 A

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So my appointment was on Monday and after doing lots of little tests, pokes and prods was sent for more blood work and to await a call on an MRI... call came in yesterday and the MRI has been scheduled for tonight with an dr appointment to follow up tomorrow... things are moving MUCH faster than I ever anticipated especially since this is the most sought after neurologist in the area and Im seeing him not others in his group!!! Guess we will know soon what I'm dealing with huh!

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SCOOBIE1962's Photo SCOOBIE1962 SparkPoints: (0)
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10/25/09 11:50 A

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good luck ton..let us know what happens!!I know it is very frustrating..but in the rend its sorta a relief...sounds crazy but you'll know what I mean!! emoticon

Dont frown. You never know who is falling in love with your smile.


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TONOZAR1's Photo TONOZAR1 Posts: 8
10/15/09 9:05 P

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Appointment isn't until the 26th of October, have to get my medical records from various drs back in MI hand picked up (apparently they wont fax them???) and create a timeline to plot out all the stuff I didn't go in for (lack of insurance and growing up as a farm kid with the theory of no blood, no broken bones, no problem) that may be related... Since I have very little of it documented in Dr offices its probably going to take some time before they get everything diagnosed I'm sure...

Having the experience I do from being a therapeutic riding instructor for close over 10 years working with many MS clients and having a few friends with it we are reasonably sure that this is where I'll end up though of course I could get off with pinched nerves or something else completely... anyway it goes though there is something wrong and I need to be healthy and strong mentally, physically and emotionally with a good support system so I can take it all in stride... rather be a few steps ahead than being blind-sided by something!

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VALI_T's Photo VALI_T SparkPoints: (109,222)
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10/15/09 7:55 P

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Well welcome back. emoticon Any more recent news about getting a diagnosis, or are you still waiting?

There was much rejoicing!


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TONOZAR1's Photo TONOZAR1 Posts: 8
10/15/09 10:18 A

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I'm the original poster, just made a new spark page! As I was editing my old page I realized that what I really needed was a fresh start, not just a makeover!!!


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8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
10/14/09 6:18 P

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I have the same story. Gets discouraging, but just keep on keeping on. Eventually they will come up with something and no matter what it is, at least you will know it is something and you are not crazy.

They have better tests now and though there is no cure, there is something you can do to slow it down and go on living a routine life.

Good luck and let us know if there is anything we can help with.

emoticon EG

Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


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VALI_T's Photo VALI_T SparkPoints: (109,222)
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10/13/09 8:18 P

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I spent a significant porton of my life trying to get a doctor to take me seriously when I said that there was something wrong with me. I actually stopped bothering to go to doctors for a while except for my yearly stuff because I was just so sick of being told that there was nothing wrong with me. Then when I was 31 I lost sensation in my hands and my feet, and finally a doctor took my complaints seriously.

I can't even begin to tell you just how relieved I was to finally have a diagnosis, even if it had to be MS. It took an MRI and a spinal tap to get it, but I was one of the "lucky" ones whose tests all came back pointing straight to MS. Knowing what I have has allowed me to get on a treatment and to learn how to handle my symptoms. I hope that you're able to get a definite diagnosis, whether it's MS or something else. Good luck to you.

There was much rejoicing!


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LOVEGOD4EVER8's Photo LOVEGOD4EVER8 Posts: 68
10/13/09 7:08 P

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My neuro gave me a neuropathy test and other tests at his office before I had the MRI at a center. They weren't to intrusive but I didn't want spinal tap nor did he because of the side effects.

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TONOZAR's Photo TONOZAR SparkPoints: (0)
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10/13/09 7:02 P

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No MRI yet... ER didn't have the equipment. They basically told us they ran what they needed to to ensure I would live until a neurologist could see me... regular DR looked at the results and said to call the MS specialist instead of the neuro the ER referred me to... already been to the office for general stuff but going on the 26th for a full eval then schedule what tests need to be done... problem is since I grew up as a farm kid with the theory of "no blood, no bones, no problem" when hurting or not feeling well I never complained to my Dr about any of it so I have no paper trail on record... hoping the DR will listen to all my stuff without needing to wait...

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LOVEGOD4EVER8's Photo LOVEGOD4EVER8 Posts: 68
10/13/09 6:52 P

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It sounds like you have a good attitude about what you are experiencing and may experience in the future. Have they given you MRIs? I was diagnosed with MS from MRIs and symptoms that were consistent with MS. Some people have spinal taps but thankfully my doctors didn't require that of me. I hope you get your answer sooner rather than later.

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TONOZAR's Photo TONOZAR SparkPoints: (0)
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10/13/09 6:34 P

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Been a sparker for about a year now but have been gone more than not for quite some time now due to a lack of energy and motivation... still have to update my page and say hello to all my old groups... but trying to motivate myself for a healthier lifestyle as I face a probable diagnosis of MS now.

Looking back on the last couple of years I can see lots of warning signs that I just blew off as injuries from my lifetime with horses, tiredness from hectic schedules and stress of moving several times recently, trying to operate my own business and working for a non-profit agency that is struggling in the current economy...

About 2 weeks ago I noticed some odd things and just wasn't feeling well. Lots of terrible headaches, backaches and completely drained of any energy and a little over a week ago not only did I have the odd tingly feelings coming and going in my hands and feet but the left side of my face and tongue... a trip to the ER, lots of blood drawn and some scans and they came back to say I needed an appointment with a neurologist... a visit 2 days later to my primary doctor and my referral was changed from a general neurologist to one who specializes in MS... no diagnosis made yet and first appointment is on the 26th but with all the reactions, discussions and the change in Doctors is all pointing towards MS being the number one idea of what is going on...

Regardless of MS as my diagnosis or not there is definitely SOMETHING going hay-wire in my body and mind and I want to be in fighting condition mentally, physically and emotionally!

No matter what the doctors may say, no matter the diagnosis/prognosis I CAN make my life my own and not let anything take it away from me.

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