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Old 12-07-2009, 10:42 AM   #1
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question on MS and help in general

I'm confused as to which way to go and thought i'd ask here for advice. I have posted in other forums on this board as i do have thoracic and cervical herniations.
twenty years ago i started get buzzing,burning,tingling in various parts of body. at times seemed like I had a fire going down my spine. it took almost a year before mostly stopped . had various mri's including brain. all were normal with the exception that They found a thoracic herniation but was told that couldnt be the cause of all i was feeling. for many years on and off i had things like burning in the arms tingling throughout body and out of nowhere exhaustion lasting weeks or months when i shouldn't have been tired.

had 2 other "episodes" alot like this up until 2004. at that time i was whiplashed and had bad back pain and many cerivcal and thoracic herniations. got depressed but somehow started feeling better(not like my old self) but very little pain after 10 months.

I have been staying that way until late august this year when all of a sudden I had upper back pain and tingling in arms and leg. I went and received different opinions by a neuro and 2 neurosurgeons as to whats going on.

Additional things that are now happening are extending numbness in arms/hands. I also started getting a strange feeling like a stiffness in arms and legs.

I saw a neurologist recently in ny who by chance was an ms expert who suggested IV therapy as a way to see if it will help. was not given any diagnosis yet.

My questions are do any of these sound like ms symptoms and can you have ms if mri's of brain and cervical are free of lesions. also does it make sense to get steriod therapy if not ms?

sorry to go on.

Last edited by larry81; 12-07-2009 at 01:21 PM. Reason: chnged the word "start" to "mostly stop"

 
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Old 12-07-2009, 10:57 AM   #2
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Re: question on MS and help in general

Nuerologists and neurosurgeons have different opinions due to their specialties. When I first received my diagnosis, my neurologist got me admitted via neurosurgery (to get admitted and have them run the tests). They were unable to ascertain my problem and passed me back to the neurologist who used the test data to give me my diagnosis.

When was your last MRI? If it was over a year ago, then you might get another MRI. Otherwise, it may be herniation and collateral damage. You are seeing a MS expert. If he does not think you have MS, on what evidence is he basing his opinion? This is important. If he shows you evidence for why it is not MS, then there stands to reason that the neurosurgeons might be able to repair your problem if the IV therapy does not work.

You would certainly be welcome into the MS family, but I would rather you not join! In the meanwhile, I think you appear to be in good hands and are moving in the right direction.
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Old 12-07-2009, 11:11 AM   #3
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Re: question on MS and help in general

Quote:
Originally Posted by MSJayhawk View Post
Nuerologists and neurosurgeons have different opinions due to their specialties. When I first received my diagnosis, my neurologist got me admitted via neurosurgery (to get admitted and have them run the tests). They were unable to ascertain my problem and passed me back to the neurologist who used the test data to give me my diagnosis.

When was your last MRI? If it was over a year ago, then you might get another MRI. Otherwise, it may be herniation and collateral damage. You are seeing a MS expert. If he does not think you have MS, on what evidence is he basing his opinion? This is important. If he shows you evidence for why it is not MS, then there stands to reason that the neurosurgeons might be able to repair your problem if the IV therapy does not work.

You would certainly be welcome into the MS family, but I would rather you not join! In the meanwhile, I think you appear to be in good hands and are moving in the right direction.
MSJayhawk,

thank you for your quick and caring reply.
I was able to get the MRI"S in september. The first neuro i saw, was someone i know many years but over the years has told me I had different things which ended up was wrong . She actually strongly recommend surgery on my C5-C6 and talked the neurosurgeon that she sent me to who didnt recommend surgery at first to change his mind. my 2nd opinion on surgery, who is high end NY neurosurgeon, strongly said no I didnt need surgery even though i had all the herniations and recommended i see the new neurologist, not because of ms but for fresh eyes.when i went to see her i was starting to feel somewhat better so didnt push her on whether it was ms or not. however, since then have been experience worse symptoms, so the plan is to go back to her but i wanted to have any questions about ms or anything else ready to ask. i'm just not sure what to ask.

thank you
larry

 
Old 12-07-2009, 11:51 AM   #4
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Re: question on MS and help in general

When you meet with your neurologist for fresh eyes, you might want to have a journal of your symptoms.

Below are some symptoms I have learned about. I have experienced most of these main categories, though no uncontrolled crying or laughter or some other "sub-categories". I have experienced all of the rare symptoms except for hearing loss. I hope this helps

The most common symptoms of MS (I think I listed most of them here):
1.Fatigue
2.Numbness
3.Walking (gait, balance, and/or coordination problems -I include leg dragging and foot drop here.)
4.Bladder Dysfunction
5.Bowel Dysfunction
6.Vision Problems (Optic Neuritis, Double Vision, problems controlling eye movements)
7.Dizziness and Vertigo
8.Sexual Dysfunction
9.Pain (such as Trigeminal neuralgia, Lhermitte’s sign, Burning, aching or “girdling” around the body- MS hug)
10.Chronic Pain
11.Cognitive Function
12.Emotional Changes (Depression, Grieving, Stress-low tolerance for stress, Anxiety, Distress, Uncontrollable Crying or Laughing,….)
13.Spasticity
Other Symptoms- though rarer:
14.Speech Disorders
15.Swallowing Problems
16.Headache
17.Hearing Loss.
18.Seizures
19.Tremor
20.Respiration / Breathing Problems (Can be an initial symptom) –This would include swallowing/aspiration issues too.
21.Itching

Oops, I should have added, the symptoms do not necessarily affect every MSer. Some may only have 2-3 symptoms. Also the affects will vary from person to person. My first symptom I can remember was foot drop. You might only experience or notice one symptom which leads to a diagnosis.
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Last edited by MSJayhawk; 12-07-2009 at 11:56 AM. Reason: add

 
Old 12-07-2009, 12:02 PM   #5
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Re: question on MS and help in general

Quote:
Originally Posted by MSJayhawk View Post
When you meet with your neurologist for fresh eyes, you might want to have a journal of your symptoms.

Below are some symptoms I have learned about. I have experienced most of these main categories, though no uncontrolled crying or laughter or some other "sub-categories". I have experienced all of the rare symptoms except for hearing loss. I hope this helps

The most common symptoms of MS (I think I listed most of them here):
1.Fatigue
2.Numbness
3.Walking (gait, balance, and/or coordination problems -I include leg dragging and foot drop here.)
4.Bladder Dysfunction
5.Bowel Dysfunction
6.Vision Problems (Optic Neuritis, Double Vision, problems controlling eye movements)
7.Dizziness and Vertigo
8.Sexual Dysfunction
9.Pain (such as Trigeminal neuralgia, Lhermitte’s sign, Burning, aching or “girdling” around the body- MS hug)
10.Chronic Pain
11.Cognitive Function
12.Emotional Changes (Depression, Grieving, Stress-low tolerance for stress, Anxiety, Distress, Uncontrollable Crying or Laughing,….)
13.Spasticity
Other Symptoms- though rarer:
14.Speech Disorders
15.Swallowing Problems
16.Headache
17.Hearing Loss.
18.Seizures
19.Tremor
20.Respiration / Breathing Problems (Can be an initial symptom) –This would include swallowing/aspiration issues too.
21.Itching

Oops, I should have added, the symptoms do not necessarily affect every MSer. Some may only have 2-3 symptoms. Also the affects will vary from person to person. My first symptom I can remember was foot drop. You might only experience or notice one symptom which leads to a diagnosis.
MSJayhawk,

thank you once again. Are there any medical tests i should be aware of -specific bloodwork,EMG?,etc? as i mentioned i already have head, cervical and thoracic mri's.

 
Old 12-07-2009, 12:49 PM   #6
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Re: question on MS and help in general

hi larry and Jayhawk.

This has been a really interesting thread to follow. I agree with everything Jayhawk told you, on his list of symtoms, as he said, I only have a few of those symtoms and definately NOT in the same order! For me, it was eye problems and numbness which started me seeing a doctor...a GP led to a CT scan, that led to a consult with Neuro which led to MRI, which led to dx, all in under ten days.

One thing that you are going to have to be careful of Larry, is back problems in general, can cause so many of the symtoms which you are describing...the pain, numbness, buzzing and stiffness, can ALL come from back pain. And, hate to say it, but fatigue can be simply a result of dealing with the pain and not sleeping properly. It doesnt have to have a medical reason behind it.

You asked, "do any of these sound like ms symptoms and can you have ms if mri's of brain and cervical are free of lesions. also does it make sense to get steriod therapy if not ms?"

And thats a really easy question to answer. Familiarize yourself with the McDonalds Criteria (the updated version) which is the criteria for doctors to diagnose MS. The most basic criteria is lesions. So, no- you have to have more then one lesion , properly placed and sized to be determined to be a MS lesion, as well as symtoms and relapses or any combination of symtoms and lesions, to get the dx.

HOWEVER lesions can show up anytime. What didnt appear back in September, might very well show up next time. MRIs should be done every 6 months at least for the first year of dx....then yearly afterwards. I get mine every 6 months even now simply because my insurance allows it.

You also asked about steroid therapy. Steroids, given IV, are for shrinking inflamation. But, they only work if given when the situation starts...if you wait a month, no- it doesnt make sense, because chances are its not going to work, and the long term effects of steroids are not too good for you; however, that being said, if you are in pain and are willing to try anything- then one round of IVSM will not hurt you. (even one round given every year) Steroids are primarily NOT used for MS, but for pain and for athletes trying to shrink inflamation in their joints/muscles....however, it is a miracle for MSers that it also works on nerve inflammation and helps us regain use of our limbs/eyes etc.

larry, no one can tell you that you DONT have MS; however your symtoms arent screaming MS to me, but rather of complications from the spinal issues you have....as Jayhawk said, youre going to get conflicting answers from a neurologist and a neurosurgeon. No doubt about that. I live outside NYC, if you need any other docs to consult for a MS check, Ill be happy to supply you with some really great MS Specialists, who can both dx and rule out MS...

I truly hope you find relief and dont have to go thru this for much longer...
Nikki
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Old 12-07-2009, 01:37 PM   #7
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Re: question on MS and help in general

Dear MSNik,

thank you for your insight. It's been over a month since I saw that Neuro/MS doctor. At the time she suggested if things continue to try the therapy for 1 day. The short period was since when this all started i couldnt sleep and it threw me into depression so she was mostly concerned about me heading back there. at times i say to myself it has to be the spine but do i want to do an operation if they are not sure. if i didnt have these prior episodes over the years i would be sure, but the doubt exists.
I am willing to try things now that i wouldnt normally. I will be going back to see her, but if she suggests the iv, whether its 1 day or 3 days, i i might ask to wait for right after the holidays, since i see there are some unpleasent side effects.
I hope and will ask her if it is a spinal injury will the therapy help as i have not heard of it for spinal issues.
by the way i was given a 6 day pill back of steriods to try and i just finished it but it did nothing. Would the iv be stronger doses?

best wishes
larry

 
Old 12-07-2009, 02:21 PM   #8
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Re: question on MS and help in general

Larry, when you do the 6 or 7 day dose of pills, its called a taper down effect. You start with 30 mgs, go to 25 mgs, then 20 mgs, each pill goes lower until you are at either 5 mgs or 3, I forget...but it tapers down gradually, and no one ever has side effects from this. Most people, also do NOT have relief...so youre normal there.

When you do IVSM- assuming its solumedrol....there are other steroids which come in IV form, but this is the most popular and is a form of Prendisone...its 1000 mgs at a time. Takes about 1.5 hours to drip thru into your vein. SO YES its huge quantities more then the pills and it might help you...

Larry, Im a huge advocate of trying anything (especially when you are in pain) and the side effects are mostly mind over matter. If you psych yourself into believing that there are side effects, youll mostly likely experience them. But, if you go into this simply as a trial for relief from what you are describing- it will either work, or not work. The side effects, if you have them, are so minimal over 3 days- that more then likely youll be hungry, eat alittle more, possibly get slightly puffy and will have a terrible metallic taste in your mouth for the duration of time you are getting the infusion. IT all goes away within days of stopping.
if you were to be one of the very few in this world who cannot tolerate the infusion, youll know in the first hour. Thats why there is always a nurse present when the first dose is administered. After dose number one, ive always had a nurse come to my house to start the shunt, and then I do my infusions by myself...its really simple.

Best of luck to you.
Nikki
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Old 12-07-2009, 02:37 PM   #9
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Re: question on MS and help in general

Thank you MSNik.

As I mentioned, the doctor had orginally mentioned a one day test. Does 1 day bring any relief or do you see a difference after 3 days?

warmest regards,

larry

 
Old 12-07-2009, 03:18 PM   #10
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Re: question on MS and help in general

Larry for everyone it is different. The one thing I do know about IV steroids, is that if they arent given when the issue starts, chances are they wont work at all......but this could be different. Im talking about a full fledged MS attack. Those, have to be treated before permanent nerve damage is done...when ignored for more then a few days, its too late. IF you are experincing something completely different then nerve damage, such as inflammation of the discs, tissues something "back" related, then it MIGHT work for you. One day is still alot of medicine....3 days is more, over a longer time...if its going to work, it might not work immediately. Steroids stay in your system up to a week at a time. So, you might not get instant relief, but you might find some relief after a day or two, even with only one dose.

Example- I have a disc issue of my own. Now and then, I get a cortisone injection in my back. Similar to what you describe, this is not MS related at all..its from a car accident ten years ago. I try NOT to get more then one injection a year- cortisone is a steroid. It NEVER starts to kick in for about 3 days...then, I manage to find some relief from the pain for about 3-4 months...sometimes, longer. This injection however is a temporary bandaid for something that eventually Ill have to address, probably in the form of surgery, however i am putting that off almost indefinately. I dont want it, and no one has told me conclusively that it will solve my pain issues. Since I dont take painkillers, and rarely does it stop me from every day activities, I choose to focus on being proactive with my MS and ignore the rest! The cortisone is about 1/5 of the strength of what IV Sm does...however, I can honestly tell you that IVSM has NEVER touched my back pain....why? probably because its a ten year old ailment.

So youre rolling the dice on whether or not it will help you, but I sincererly dont believe 1 dose or 3 days of doses will hurt you. And if it does help.....well, then, this was all for naught, huh?
Try it. And, dont worry about the "what ifs".
Nikki
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Old 12-07-2009, 07:56 PM   #11
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Re: question on MS and help in general

You know what I have all of this, every one...took my symptoms to the doc more than one actually and they say well could be or could not be??????? Okay so how do we proceed from here?? I have every last stinkin symptom of MS and my walking and arms are getting worse and no one is taking it seriously. I hope nothing bad happens before they make some kind of diagnosis for me. I hope all of you the best that are struggling with these symptoms they are horrible and we have to hang on the best we can every day. I just wish some of these things were easier to diagnose or some of these doctors were more competent.
Just stinks!

 
Old 12-08-2009, 04:29 AM   #12
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Re: question on MS and help in general

Tina, you are in MD, right? You have some of the best docs in the Baltimore area.....if you are having that many symtoms, its time for you to become your own advocate and look into another doctor and more opinions.

But I think its important for you to know that the reason MS is so hard to dx is because almost every single one of the symtoms on Jayhawks list, doesnt have to mean MS. They can be caused by so many other things....look into the revised McDonald criteria. This is what doctors have to follow in order to give a MS diagnosis. Lesions, specific to MS are primary in the criteria- so MRIs, usually given every 6 months, are to be expected (and demanded) if you dont have a diagnosis.

HOWEVER I think its really important to point out that those of us who have MS, have manageable lives. We have to take care of ourselves and yes, many of us (myself included) do shots to manage the disease, however we also live productive lives and have families and wonderful days....

if youre not satisfied with the answers you are getting, then its time to seek answers eslewhere... if you need help locating a MS doctor who can both Dx and Rule out MS, get in touch with your local MS Society for referrals or shout out here and ask others who they have used in your area.

Good luck to you.
Nikki
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Old 12-08-2009, 02:23 PM   #13
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Re: question on MS and help in general

Nikki,
I understand that not all those symptoms mean you have MS. I have been told that on several occasions, that is why I am trying to ask you all how long it took to be diagnosed. That's why i am confused because the doctors are like it could or could not be. I had lesions on my last MRI before I had to have brain surgery for a tumor but the MS specialist at UofM said that because I had a tumore there is no way I could have MS. Didn't even look at the MRI for me. I know Baltimore is so great for it's wealth of great doctors and I have seen a bunch of them more than I can count. I have doctor bills out my eyeballs. Johns Hopkins isn't cheap! I am sorry for my frustration over something I think may be happening to my body. Something you have, and i am sorry that you do, I don't want this I don't want any of it. I will be happy to let it go! I know you all have productive lives or can, I would like to be treated for it if they find I have it to see if that will help me to also be more prodcutive. That's is my mission not a label for people to feel sorry for me. I am working my butt off to try to find out what the hell is going on with me. I have two small children and I feel like I am dying, fading every day. I want to know what the future holds that's all. A lot of other things present like MS that are worse as well so I would like to find out SOMETHING~!! Is that too much to ask? I just want an answer, I don't care what it is at this point. I have lost so much. I have lost friends, family, I have done and been through enough, but I will keep trying. Who knows? Sorry for asking.

 
Old 12-08-2009, 02:25 PM   #14
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Re: question on MS and help in general

Oh and I have been my own advocate, I have taken diaries, scans, research with me to these appts and they don't even bother to look at them. Some of these great docs in baltimore are some of the most egotistic SOB's I have ever met.

 
Old 12-08-2009, 03:56 PM   #15
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Re: question on MS and help in general

Tina, I honestly wish you find your answers. You sound so frustrated..
Youre obviously on the right track, you just need to hang in there and keep doing what youre doing. Not everyone gets a quick dx..

But I also think you might want to start your own thread so we dont monopolize Larrys questions here....although the topic is related, we got off track (sorry Larry)- so lets start one for you, so you can get more feedback! We are all here to support you, Tina.

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Last edited by MSNik; 12-08-2009 at 06:09 PM.

 
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