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789820 tn?1315448513

Undiagnosed symptoms since January 2010

Before I say anything, I want to add that I had what was considered "surgery" when all 4 wisdom teeth were removed in October 2009. My top wisdom teeth were impacted into the sinus cavity, the oral surgeon said it was a success and there was no complications, but for 2 months after the surgery I had a nasty infection, which has since caused me to get sinitus on a daily basis) I've been so physically ill or sick in my life. Never before I had the surgery had I complained about anything! I've always been generally healthy all my life, aside from what they say was Epilepsy I had from the ages of 10-13, which was treated with Tegratol and they haven't came back.

Anyway, I've posted in the forums before about symptoms i've had & As of January 2010 i've had the following symptoms off and on:

ear aches in both ears (prominent in left ear)
ringing in both ears (sometimes they both hurt and ring at the same time for no reason at all, when they rang at their "peak" the slightest talking set them off, particularily my left ear)
chronic muscle pain (the more physical exercise I do, the more it hurts)
joint pain often (fingers, knees, toes, wrist)
neuritis in my left eye (pain behind and around my eye making it difficult to see and sometimes blurry)
tingling in my face, neck, left arm, back, fingers & toes
fatigue (especially worse during the evening, hard to fall asleep and always wake up groggy)

Now, here's what I've been diagnosed with:

June 2010-costochondritis (inflammation in my chest wall, hurts on a daily basis, sometimes it gets so bad that my upper back between my shoulder blades ache and it hurts to breathe in)
November 2009-Labrynthitis (vertigo and dizziness, unable to walk, hearing loss in left ear (hearing test showed that hearing in left ear is below average)
January 2010-Trigeminal Neuralgia (Severe pain on the left side of my head that goes through my neck and down into my left arm, it makes my muscles stiff and causes "sore spots". It caused "ice pick" headaches and tension only on the left side of my head) Along with various cold spots around my head)
TMJ - Severe Jaw pain, with headaches (left side)

So...costochondritis almost always bothers me, and joint pain is made worse by high humid or stormy weather. When my ears ring off the hook and ache its when I usually get "nerve damage" flare up...I call it a flare up because it all happens at once and can happen from hours to days. The first flare up I got lasted a couple months, it was preceded by an intense, painful headache, the worst headache of my life!!!!

I've had several ctscans, xrays and blood work done, but they all come up normal. An ENT and family doctor both mentioned my symptoms sound like MS and my mom decided to book me an appt. with her neurologist. He offered to see me for free but I would have to pay for the MRI w/ contrast. That procedure cost $2200. And I didn't have the money so I couldn't get it. then they talked about a spinal tap...but again, no money. So i've had all these symptoms off and on and they usually come in a rage all at once as a flare up.

I don't know how much longer I can live with this. One of my doctors did give me Neurontin last year, a full months supply. I took it everyday and saw an improvement in the nerve damage, it subsided and I was feeling better, he wanted to prescribe it to me but that alone cost $200 a month. So, i'm using up the remainder of muscle relaxers I have, which isn't much. I only take them on "bad days" when it's just too much for me to handle. So I'd say maybe one per month.

Basically, my question is...does this sound like MS? The more research I do on it, the more my symptoms make sense, but I don't want to spend all that money and they tell me "i'm sorry, there's nothing showing, we don't know what's wrong with you" .....but then I think about the nerve damage and how it affects me, so obviously there is something wrong with my nervous system. I don't know...what do guys think?
12 Responses
1318483 tn?1318347182

Hi, photo-

I am sorry that you are having all of these things going on with you.  After reading your post, I ended up with questions.  So, I thought I would ask them and maybe it will help me and others here in the forum understand a little bit more.  

You say "nerve damage" flare up.  Are you referring to the TN that you described or other symptoms you are having?  If it is not the TN, what symptoms to you refer to as nerve damage?  How often do you get these flare ups?

You also say unable to walk.  Can you clarify that?  Do you mean your legs feel too heavy...your legs won't hold you up...or they simply don't work...or whatever happens to you, if it doesn't fit what I wrote.  

When you went to the neurologist, did he do a neurological exam on you?  Did he find anything wrong in the exam?  How were your reflexes?  Besides getting the MRI, did he give you any thoughts on what your symptoms may be from or anything like that?

I am glad the neurontin was working for you.  Yes, it is expensive.  There is a generic that works just the same, gabapentin, but it is expensive too.  You say that you are taking muscle relaxers on your bad days now, which is about once a month.  So, do you get these "nerve damage" flare ups once a month then?  And the muscle relaxer helps ease these symptoms?  What muscle relaxer are you taking?

I would say your first step right now would be to get health insurance.  The tests needed for neurological issues are not cheap and neither are the specialists or the drugs used to ease some of the symptoms.  If you cannot afford insurance, do you qualify for your state's insurance?

In my opinion with what I have read, your symptoms don't scream MS.  But, I would be concerned with the headaches.  MS is a dx of exclusion.  So, basically you would be tested for all sorts of things first to rule them out.  There are many, many MS mimics.  There isn't a test that can be done that will dx MS.  The doctors use all of the many tests they may give you, after ruling out the other things, and make a determination.  I am afraid this can be a long and slow process.  

I would like to guide you to our health pages.  Here is a direct link:  http://www.medhelp.org/health_pages/list?cid=36.  There is a huge amount of information on the ins and outs of MS.  It is a wonderful place to start.

I am so sorry that you are going through all these symptoms, especially without relief.  I don't know if I helped you any or just added to your confusion and frustration.  :(   I am sure others on the forum will pipe in soon with there opinions soon.  

Welcome to our forum,
Addi  





  

It does sound like you definitely should be getting at least a brain MRI, as the headaches you describe sounds like they need to be checked into.  I would not advise getting an LP (spinal) without first getting an MRI.  
395429 tn?1386375604
I am not a doctor so I can not help you there. But what I can tell you is to not give up. Sometimes there are no definitive answers we just need to be patient. Be good to yourself and get rest.

Hugs
Sunnyweather
1253197 tn?1331209110
Hi and welcome to the forum. I think that Addi has answered your post very well and has asked some of the questions that came to my mind also.

I will share my personal thoughts with you. Before I had MS I used to say I am so lucky to have my health as it is the one things that none of us can control if we are unlucky enough to develop a condition/illness or be born with one. Having been dx's with MS I am glad that
1253197 tn?1331209110
ctd. sorry I accidentally pressed the post button before I had finished.

Having been dx'd with MS I am glad that I know what I am dealing with and at least at the moment I can make my own deicisions and choices about what line of treatment I take. I know that our health system in Uk is very different to USA but I would suggest to you that sorting out health insurance is a priority and getting a brain MRI may be the only way that you can get some answers.  We all only have one life and I value each day as being precious.

So my question is really  to ask you to think about "what can you do to help yourself if it is answers that you require?" I know that we are in the hands of the professionals but think about any of the barriers that you are aware of that are preventing you making progress in your quest to understand your symptoms. It may be a straight case of finance/insurance
but I can tell you that I would prefer to spend "all that money" and f


1253197 tn?1331209110
OK I am now realy embarrassed that this is the second time I have accidentaly posted before I have finished but my laptop is very sensitive. I would love to blame it on MS.....but in this case it is just user error so apologies. I have nearly finished so here goes

I would prefer to spend  "all that money" and find out that I HAVE NOT got MS as this would at least help you eliminate this condition and if you have something else then further tests may be required. Anyhow enough said..just think about what you want...I sense it is an answer.

Best wishes from a heavy handed typer

Sarah
789820 tn?1315448513
Hi Addi,

thank you for your opinion and questions. As far as the nerve damage "flare up" goes. I get burning & tingling sensations in my face, neck, arm, back, fingers and sometimes toes. The flare up happens I'd say about every month, it's random and I haven't been keeping track. It does happen most often when my ears ache and ring continously for hours on end. That's what baffled the ENT and neurologist. They didn't understand why BOTH of my ears ache, as if there is an infection present and they both ring at the same time. literally, in both ears. it's hard to explain.

The muscle relaxer (cyclobenzaprine 10mg) only helps with the joint & muscle pain; the nerve pain is still present when I take a muscle relaxer. like I said I was on neurontin for a month and that helped with the nerve burning & tingling sensation.

Sorry, while typing out that novel, lol, I forgot to include other things, because I was trying to remember all of the symptoms. But As far as the Labrynthitis goes, that one mimics strokes. I had the headache, severe pressure in my head, complete dizziness, my eyes were moving back & forth and I lost complete control of the right side of my body, I had to hold onto things to walk. I was so dizzy that I could not get out of bed, it lasted for 12 hours, that was also when I lost hearing in my left ear. A ctscan was done and they found nothing. That happened a month after my wisdom teeth were yanked.

All the neurologist did was a reflex test, which came out fine and we went over my history and all the symptoms. He said he didn't know what was wrong wtih me and wanted to do the MRI with contrast.

I hadn't thought of getting the headaches looked into. As you can see from my posts most of my symptoms are on the left side of my head. I do get a lot of sinus headaches in the front and a lot of pressure, but then there are the other headaches that I get in the lower left mastoid cavity and go around to the side of my left ear.

I really appreciate everyone's input and I know I need the MRI done at least to rule anything out. But it's so hard living with all of this and knowing it didn't start till my wisdom teeth were pulled :( I"m just so sick of being physically run down. I can't get a break :( And the worst apart about it is I can't find on any forum's or websites of people having the same symptoms as me. so it's hard for me to determine what might be wrong, especially since blood tests and CTScans all come back normal. :(
1740498 tn?1328962585
This might be a dumb question, but have you been tested for Lyme?
1756321 tn?1547095325
Magnesium deficiency is a listed cause of TMJ dysfunction. Surgery is a listed cause of magnesium depletion.  Nitrous oxide (used in dental surgery) is a cause of vitamin B12 deficiency.  This deficiency mimics MS and easily misdiagnosed due to far too low a B12 serum reference range.
1318483 tn?1318347182

Photo-

Thanks for expanding on those few areas.  I am sorry for all you are going through, that is for sure.  And, I know it can be quite scary and frustrating.  I can safely say, we have all been there and a lot still are.  :(   There are quite a few people who have some of your symptoms, too...without a diagnosis.  So, you are NOT alone.  

Please take to heart what Sarah wrote above.  She always says things so very well.  You can laugh a bit at her and her three posts, too...I know I did!  Been there, done that...but not twice in a row!  *grin* laughing with you, Sarah.  :)

But, seriously, what she said was what I was trying to get across, too, but failed to say it with the grace you will always find in her messages.  

I do believe the headaches need looked into...and soon.  And, maybe even a very thorough physical exam and neuro work up.  Plus the ever expensive MRI.  

Please keep us posted on how your are progressing in finding answers.  Feel free to post more questions, too.  Good luck in finding a way to get health insurance, for sure.  This should be top priority.  

Hugs,
Addi
789820 tn?1315448513
no I haven't been tested for Lyme, but dn't live around the woods or forest and haven't been bit by a tick since I was a young child.
789820 tn?1315448513
I know I need insurance, but the company I work for doesn't offer it to p/t associates and unfortunately I make too much to qualify for state assistance. At least my son has medicaid, i'm thankful for his health. Financially things are really rough. I've got student loans and past debts that i've been trying to take care of and the amount of money I make right now wouldn't even cover the cost of insurance for both of us per month, unless I had a rediculously high deductible and co-pay, which would then defeat the purpose of having insurance since I wouldn't be able to afford that anyway. lol.

Maybe, what i've been thinking I will do is go back to the Neuro and schedule for an MRI when I get my tax refund next year, around February. That's really not to far off.

Until then i'm not sure how I should continue to ease the pain. I"m almost out of the muscle relaxers and I know dang well my doctor won't issue a refill just because I have pain once a month, but they really help ease the pain, even if it is just for a couple of days. Should I go back and ask for another sample of Neurontin and a refill on the muscle relaxers? I've never done that before and I try not to take medication unless I really absolutely need it.

Thanks for your answer(s) Sarah! ;)
Avatar universal
I have had myoclonic seizures since I was a kid. And it started after my trip to the dentist being on the laughing gas......I've had them all my life. Didn't realize it could have been from the laughing gas. Had my wisdom teeth pulled too at a late age of 28, on the laughing gas again (nitrous oxide), seizures increased, then I started to think it could be related to that. I had a grand mal seizure while driving finally and wrecked. Came out okay but no driving for 6 months. Seizures under control w/meds. But my teeth have got bad with old fillings cuz I'm afraid to go back to the dentist!! PPL need to be checking into the nitrous oxide, this is what just happened to Demi Moore, she has been sniffing it or smoking it somehow and had a some type of bad seizure. I know when I was a kid the dentist would knock me out with the nitrous oxide cuz I fell asleep every time he I went. They don't give kids that much gas to knock them out like that now.
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