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Old 09-20-2012, 06:09 PM   #1
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Exclamation Doctors not taking possible MS seriously. Don't know what to do. I want life back.

I have seen many doctors and specialists for many of the symptoms that I've had over the past 2 years. I have many, many symptoms that would come on gradually, go away and then come back. I am a 19 year old female and a sophomore in college in the northern part of the US which puts me at risk for MS already. MS doesn't run in my family but I also am aware that MS doesn't discriminate and people can still get it regardless. I don't know what else to do at this point since it seems like my doctors have not tried thinking about all of the correlating symptoms as I have and they continue to think they are all separate issues or anxiety. I don't know what to do or where to turn to get help anymore. I have been so distraught over all of this that I almost thought I had some sort of schizophrenia or was Bipolar (I saw my psychiatrist and he told me I don't though). My concerns are starting to drive my family and fiance up the wall.
Symptoms:
-Costochondritis that is chronic (It is a benign rib inflammation). It will go away and come back for long periods of time. It recently got worse and spread to the other side of my chest. I get spasms and twitches with this pain. I work with a rheumatologist on this. (Contracted it 2010- present)
-I had random painful urination and urgency (no incontinence or anything like that) my freshman year of college. It lasted for about 4 months. I had thought I had intersistial cystis but my doctor simply diagnosed it as a tight pelvic floor due to clenching muscles too tightly. These symptoms will come and go as well. (2011- present)
-The pelvic pain that I had caused sciatica. I actually had to have a lumbar spine MRI during that time to make sure it wasn't cauda equina (it was normal). I don't really have sciatica pain anymore but anytime I touch the sciatica area, I feel a buzzing and tingly feeling all over it.
-Vertigo, Lightheadedness, and chronic Nausea. (2010-present) Sometimes vertigo will last for one week or two at a time and then go away. Got it my junior year in high school.
I had constant nausea my senior year of high school for about 6 months. It only comes on during menustration now. I have now learned that I have some sort of vestibular disorder (inner ear disorder.) My doctors used to chalk up the nausea to just hormones. Unfortunately, I have now learned that MANY inner ear disorders (such as Meniere's Disease) produce the SAME symptoms as MS! It is common that people with these inner ear disorders will undergo testing for MS to rule it out which puts me in an extreme state of panic.
-Tingling, Burning, Slight numbing, Prickling, Crawling sensations all over body. (2012-present) They came on after a period of severe stress over all of this. Now I get them immediately any time I happen to get anxious and worried.

A couple months ago, I started to connect the dots and see that my symptoms do sound a lot like MS. I visited a Neurologist a couple months ago for those symptoms (I saw him BEFORE I experienced tingling, paresthesia sensations and before learning about my possibility of inner ear disease that causes dizziness and nausea). He did the Babinski reflex test on me and said I was negative for MS. He told me I had perfect coordination, vision, and everything etc. Unfortunately about a month later, I developed the tingly, prickly, and slight numbness sensations in my arms, legs, and all over my body that were constant at one point. (They now come on immediately when I get anxious). I saw my general doctor about those symptoms and she also did the Babinski reflex test and said I don't have MS. It was a week ago I learned about the vestibular ear issues that I have. I even get more worried because I read of one person with vertigo that didn't have Meniere's disease but also had a negative MS MRI and the doctor told her that she could still have MS and basically she will have to wait and see. I am convinced that my strange medical symptoms and episodes of weirdness are not all coincidences. I think they are related to MS but I hope that I am wrong. I know that no one here can diagnosis me but the reason I am posting this here is because I am at a loss for what to do. I clearly do have medical symptoms that scarily seem like MS but at this point, I feel like if I go back to more doctors they will just push me away and get annoyed with me.

Last edited by cheshirecat1; 09-22-2012 at 12:22 PM.

 
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Old 09-20-2012, 06:35 PM   #2
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

Welcome.

It is difficult to tell if you are having problems from one problem or several problems. Some of your symptoms are not MS, but others could be. If you have anxiety/stress problems, these could cause many if not most of your symptoms.

If you have MS, you could have a negative Babinski reflex because the Babinski is not 100% perfect. I have one, but there are others who do not. IF you have MS and you have had MS symptoms for some time, then a head and c-spine MRI with and without contrast should show lesions. If no lesions are yet visible, a VEP (Visual Evoked Potential) test could provide an indication if your problems are neurogenic.

IF your problems are anxiety/stress, a neuro-psychiatrist can greatly help you manage your problems with meds, counseling, or a combination of both. Anxiety/stress are treatable conditions- and very real.

You are in a difficult set of circumstances being bounced around without any real answers. No one likes to have this done to them. I can well empathize with you.

I would start with a teaching hospital. When I was first diagnosed, I went to my university's hospital. There the neurologists are in a department, but they are further divided into many specialties. If you can get into such a setting, I would start with an MRI and then allow the neurology department to work with you as a team in order to get the answers you need.

I hope you can get some answers soon and I hope that you will find support herein. You are not alone!
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Old 09-20-2012, 06:43 PM   #3
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

Hi Cheshirecat. (great name by the way),

First of all, I have to tell you, you sound like you have been looking up symptoms, the worst thing you can possibly do for yourself.
Secondly, living in the northern part of the united states does NOT make you higher at risk for MS. Statistically, people with northern latitude (as in Northern Europe) have a higher incidence of MS, but in the US, location has zilch to do with it. Next, MS isnt hereditary. No one in your family needs to have it...

Now, the Neuro you saw, if he wasnt an MS specialist, and Im willing to bet he was not because no decent doctor rules out MS based on a babinsky test- was a waste of time. You definately want to start over by seeing a Mi specialist. THe first test on the agenda is a spinal and brain MRI with and without contrast. From there, we see what happens. Blood work should be done to eliminate any deficiencies and rule out infections. There is something called the McDonald criteria (revised) which will explain to you what you have to have in order to get a MS dx. ALL doctors use this. The babinski test, isnt on the criteria. And, by the way, I have a negative Babinski reflex, a negative spinal tap, and more than 100 lesions on my brain.

The symptoms you list, are actually symptoms of more than 100 other diseases. This is why I thought maybe you looked them up. When you do that, youre asking for trouble. Since so many people look up those symtoms and the words MS, its always going to show up at the top of your list of comparable diseases. HOWEVER, most of what you actually said are extremely uncommon for MS patients.

The whole inner ear thing, is not MS related. Menieres disease is not related to MS, nor does it present the same way. Vertigo, one very slight symtom whcih affects 20% of MSers, can be caused by innerear disorders, however what you are describing, is not MS. Painful urination is not MS related. Nausea isnt MS related. Rib inflamation certainly isnt. The only thing you mentioned which is common in MSers is frequency of urination. What you didnt mention are the top ten complaints of MSers. Im not going to list them, for fear you might decide you have those too.

My advice to you is start over. Find a MS specialist and ask him to run the proper tests. There is a very good chance that you wil not show MS. And, for those people who have "negative" MRIs, as you called them. There is no such thing really. Its an inconclusive MRI. Which means "something shows up" but they cannot tell if it is related to MS. With cases like this, they re-test in 6 months, and again every 6 months for two years...if at that time, nothing has shown up yet, then its ruled out. Unless new symptoms develop, or new issues arise, MS is actually only difficult to diagnose if there is nothing to see. I think you are worried for nothing. There are WAY too many things which can be causing your particular list of symtoms besides multiple scerlosis.

Please try to relax. Its not worth making yourself sicker over by worrying....find a good doctor and get the tests, for your own piece of mind- but dont allow this to make you sick. MS is extremely common (over 450,000 cases in the US alone) and extremely livable.

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Old 09-21-2012, 04:28 PM   #4
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

Thank you guys so much. Both of your answers have been helping me through this dark time greatly. I saw my general doctor today for my vertigo, dizziness, and nausea and she told me that she did a thorough neurological exam on me but that if I am still worried about having MS that she will send me to a neurologist. She said that she doesn't want to put me "through the ringer" with all of the MS tests yet since they would involve MRIs and a spinal tap. But, I am already put through the ringer everyday thinking that I have MS... so I will go see one soon. I decided that I'm going to go see the Ear, Nose, and Throat doctor that she still wants me to see about my vertigo and dizziness and I will tell the ENT Dr everything and see if the ENT Dr thinks it could be MS. Do you guys think that is a good idea?

 
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Old 09-21-2012, 04:40 PM   #5
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

As an MS Specialist takes time to get into see, i would certainly see the ENT because you never know!! I do not think the ENT will tell you "MS", but if your vertigo and dizziness is related to your ears or throat, this could also link to your nausea.

In going through the process of diagnosing MS, it is really not too bad. If your ENT identifies a cause, then you can always cancel your MS Specialist appointment.
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Old 09-21-2012, 05:07 PM   #6
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

Quote:
Originally Posted by MSJayhawk View Post
As an MS Specialist takes time to get into see, i would certainly see the ENT because you never know!! I do not think the ENT will tell you "MS", but if your vertigo and dizziness is related to your ears or throat, this could also link to your nausea.

In going through the process of diagnosing MS, it is really not too bad. If your ENT identifies a cause, then you can always cancel your MS Specialist appointment.
Thanks. That is a good idea. The doctor today also said that she doesn't think my nausea, dizziness, and vertigo is Meniere's Disease (since I don't have any ringing or hearing loss) but thinks it could be something else with the ear. That also makes me think that it could be MS even more. But, like you said, I will try my best to relax and meanwhile make these appointments for the ENT and MS specialist.

Last edited by cheshirecat1; 09-21-2012 at 05:10 PM.

 
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Old 09-22-2012, 09:33 AM   #7
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

As far as ears goes, pulsatile tinnitus affects me and is caused by my MS. It is quite annoying and can cause loss of sleep. I get some relief from wearing a pair of shooter's ear muffs (passive ear protection). Pulsatile tinnitus sounds like a helicopter approaching and leaving. For me it lasts for 3 days to 2 weeks (so far). I have not, however, had any vertigo, dizziness, or nausea as a result.

MS can cause vertigo (been there), dizziness (check), and nausea. I will go through cycles when a smell can ruin my appetite for a week or two. As to dizziness, one step up a ladder can be too much for me sometimes or if I look straight upward, I may find myself on the ground. When I went to the Grand Canyon, I had to focus out and not down and when driving in the mountains I kept my eyes focused ahead of the car on the road and not to the side!
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Old 09-22-2012, 11:00 AM   #8
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

Quote:
Originally Posted by MSJayhawk View Post
As far as ears goes, pulsatile tinnitus affects me and is caused by my MS. It is quite annoying and can cause loss of sleep. I get some relief from wearing a pair of shooter's ear muffs (passive ear protection). Pulsatile tinnitus sounds like a helicopter approaching and leaving. For me it lasts for 3 days to 2 weeks (so far). I have not, however, had any vertigo, dizziness, or nausea as a result.

MS can cause vertigo (been there), dizziness (check), and nausea. I will go through cycles when a smell can ruin my appetite for a week or two. As to dizziness, one step up a ladder can be too much for me sometimes or if I look straight upward, I may find myself on the ground. When I went to the Grand Canyon, I had to focus out and not down and when driving in the mountains I kept my eyes focused ahead of the car on the road and not to the side!
I have experienced the exact same thing with the nausea. A smell can also ruin my appetite the same way... On top of that, I don't know if it's my worries or what but the tingling and prickling zappy sensations have come back again. I feel them mostly in my fingers, hands, arms, and in the legs too. It really makes me scared. I brought it up with my doctor but she still said that I have a perfect neurological exam but that if I wanted to do the MS testing she will refer me to one of her favorite neurologists. I will still try the route of going to the ENT first and explaining everything to him. In the mean time though, I can't help but think why on earth anxiety or stressing could cause these zapping prickling paresthesia sensations. I tried looking it up but it really doesn't indicate that anxiety can cause this... It honestly makes me convinced that I do have MS but I know I have to wait until I get into my appointment. Sorry I just have to vent.

 
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Old 09-22-2012, 11:20 AM   #9
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

A VEP test should really be able to ascertain if there is a neurogenic cause affecting you. You need not be scared. I would accept that your symptoms are real and that you are sane.

Anxiety can mimic MS. You mentioned being scared and worried. You need to try to allay your worries and fears and focus on moving forward. Anxiety can be a stand-alone problem OR it can be a component of MS.

I would see the MS Specialist without any motives other than finding an answer. The MRI may not see anything, but if there is a neurogenic cause, it will very likely show on the VEP. If your VEP gives indications of problems, you will likely have another MRI to look again. This could mean an MRI which covers more of your spine.

Stay strong and please keep a journal of your symptoms, how long they last, when they start, etc. The journal can certainly help provide clues to the neurologist or other doctors.
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Last edited by MSJayhawk; 09-22-2012 at 11:33 AM. Reason: typo

 
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Old 09-22-2012, 11:36 AM   #10
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

Thank you so much Jayhawk. I am going to go about my day and get some shopping done today and try not to think about it until I go to these appointments. I have been keeping a journal and I will continue to update that everyday. That is interesting about the VEP. I haven't heard of that test before. I will do some looking on it later today. I know that my doctor mentioned that besides MRIs MS testing involves spinal taps. When do doctors decide to do the spinal tap? Also, I did have a lumbar spine MRI done about 4 months ago due to the pelvic pain (the pain caused sciatica and they wanted to make sure it wasn't cauda equina) and they said that everything on the lumbar spine was normal. Would anything MS related have shown on that? (I know that sounds so silly but I'm just making sure lol)

Last edited by cheshirecat1; 09-22-2012 at 11:40 AM.

 
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Old 09-22-2012, 11:58 AM   #11
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

For me, the LP or Spinal Tap has always been the final test. The LP is not a specific test for MS and no doctor should decide upon the MS diagnosis based solely on the LP results. 15% of MSers who have had an LP have negative results (normal readings) and not all MSers get LP's. Though it is not a specific test, it will help eliminate any potential concerns which could mimic MS.

Having the MRI of your lumbar spine would be a rarity if MS lesions were found because most MSer's have lesions on the brain and/or C-spine. My VEP results in 2002 should ongoing problems, but my first MRI of my head and C-spine could not find any active lesions. After the VEP another MRI was ordered and ran from my head through my t-spine (thoracic spine or spine in the chest area). I had several active lesions on my t-spine and now my MRIs are all from my head through my t-spine. There are MSers who have lesions on their L-spine; therefore they would need MRIs of head through lumbar.

Since the summer of 2007 I have experienced recurring sciatic pain which radiates to my left hip and left thigh. For me, this is MS related and I am experiencing it again this year. I have had the pain this year since the second week of August. My heating pad is my only relief. This year it also spread to my upper left side and down my left arm. It is quite painful. These pains, for me, can last for up to 6 months. My left leg has never fully recovered from the first attack in 2007.

As to when a doctor will order a spinal tap, it really depends on the doctor. My neuro tries to do non-invasive testing first with the spinal tap being the final test. Your neuro may have a different plan of action. Many MS Specialists will be happy to discuss a plan of action with their patients, I think.

IF your neuro asks you to see a neuro-psychiatrist, please do not be disappointed. Sometimes anxiety can muddy the diagnostic process. They may want to try to treat the anxiety in order to determine whether it is a component of your problem or if it is a stand-alone problem. The more you can do to set aside worries and fears and lighten your stress levels, the better things are for you. IF you have MS, you will certainly want to avoid stress, anxiety, and worries as much as possible because these can debilitate an MSer quickly.
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Old 09-23-2012, 06:04 AM   #12
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Re: Doctors not taking possible MS seriously. Don't know what to do. I want life back

I hate to say it, but if it is MS, you probably won't "get your life back." Relapsing-Remitting will give you periods of "normalcy," but it is an ongoing condition... They can treat your symptoms and you can take the injections to slow down progression, but so far there is no cure for this thing.

I wish you luck with the doctors.

 
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