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  • Abnormal MRI. Is it MS?

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    Old 12-17-2011, 08:59 PM   #1
    robinsc0417
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    Abnormal MRI. Is it MS?

    I don't know what to think! I have been suffering progressive symptoms for about a year now. Started with extreme exhaustion, increased migraines, and generalized body pain. The migraines improved when I had to quit work back in March and are now the usual 1-2 a month as it has been for the past 20 years.
    Now I suffer from many debilatating symptoms including severe all over pains, weakness, difficulty walking, thinking clearly, muscle twitches and spasms, balance issues and vertigo, intermittent numbness/tingling, my bowels don't work on their own anymore, and many more issues.
    My GP maintained it was just depression (yeah right) and I have seen 3 different neurologists. My current one (who I drive 4 hours to see) finally has taken this seriously and is doing many tests. Parkinson's, Shojrens, lupus have been ruled out. My MRI was abnormal. My brain showed 2 lesions, but my neuro said it may be scarring from migraines. However, I also had a lesion on my cervical spine. My neuro doesn't think it's MS, but ordered a lumbar puncture which I just had done and am awaiting results. She also ordered evoked potential tests which I have to find yet another day I can drive the 4 hours to have it done. My hubby has to get time off work again cause I can't reliably drive anymore.
    I know it will take all the tests together to definitively diagnose this, but my feeling is, with the severe symptomology that this is probably MS or related disease.
    I guess my question is: Has anyone else been through this? What was your outcome? If the lesions on my brain are from migraines, what about the spinal one and most importantly what about the severe, debilitating symptoms??
    I've decided I'm ok with a MS diagnosis cause I know I'm obviously very sick and if the MS drugs can help, I'm for it. I realize the drugs carry many health issues as well, but this pain is killing me! Not to mention the other symptoms....
    Anyone have words of wisdom? Ways I should keep on the doctor for answers? Ideas of what this is?
    Any help is much appreciated!

     
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    Old 12-18-2011, 07:06 AM   #2
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    Re: Abnormal MRI.Is it MS?

    Hi there. You do realize that none of us are doctors and you cant count on our answers to be certain, right? I will tell you, from what you wrote though- this isnt likely MS.

    The fact that the only lesions you have on your brain are scarring from migranes, and that is a highly likely if you have sufferd migranes for so long- is fairly indicative that its not MS. The one lesion on your cervical spine COULD not cause the symtoms you are telling us about. Of course, depending on whether or not they did the MRI with contrast - they could have missed something on your brain....the lumbar puncture IS NOT CONCLUSIVE for MS. What it does do, is rule out brain infections and things which mimic MS...hopefully, its normal- but its not going to tell you if you have MS or not.

    Evoked Potentials also will NOT diagnos MS. They can help rule out other things, but it wont be conclusive...

    The last thing I wanted to tell you is that there are no MS drugs which will help your symtoms or repair whatever is going on. The MS drugs which are out there, are supposed to prevent further progression, but they dont work for everyone and at 2500$ plus per month- you wont know if they are working for a minimum of 6 months....treating the symtoms, is what you can be focusing on now, and you dont need a MS diagnosis to do that. If you have exhaustion, there are drugs for that. If you have neuropathy, there are things you can try for that too.. migranes, of course are tricky- there are things which may help, and its important to find out if you have triggers which bring them on. Foods , temperature changes- stress- things like that can trigger migranes. There are drugs to stop them in their tracks if you catch them when they first start. I toook Migranol, a nasal spray for years to ward off the migranes I was getting. They seemed to stop when I cut back on dairy. I only get them occasionally now. I used to drink alot of milk and eat alot more dairy items. I stick with almond milk and avoid dairy as much as possible...

    Its unfortunate, but everyone automatically thinks MS when they have symtoms, I pray you DONT have MS as its life changing with regards to insurance and health care...however, it isnt a death sentence and its easy to learn to live with this disease; however, please remember there are over 400 diseases which present like MS....and the chances of you having one of them and not MS, based on your MRI, is strong.

    MS is diagnosed by ruling out everything else, so its not a waste of time to get these tests done- you can probably get Evoked potentials at a hospital near you, who can send the results to your 4 hour away doctor...why dont you explore that idea? The test is less then 15 minutes, seems a shame to have to give up a day to get that done. Your doctor probably wont perform it anyway- he just needs the results of the test. Its just a thought.

    Just dont automatically think that going on a MS drug is going to change your life. It wont. It wont undo what is already happening and from the sounds of your post, Disease Modifying Drugs will not change what you are describing....Id be looking for symtomatic relief rather than MS drugs. If you were having progressive symptoms which your doctor could see over the past 3 years - your MRI would probably have picked up more lesions to justify them- if it was MS. I have 55 lesions on my brain, and manage to function perfectly normally. I work 50+ hours a week, go to Graduate School and have a family to take care of......Lesions, are not always the reason for things going wrong. Sounds like something else is happening to you....

    Good luck straightening this out! I wish you the very best and pray for you its not MS.
    Nikki
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    Old 12-18-2011, 09:41 AM   #3
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    Re: Abnormal MRI.Is it MS?

    I had similar symptoms and was diagnosed with MS.
    i had only a few small lesions on brain(not typical of MS) they also thought I was having migraines and I had one lesion on spine. My LP came back positive (but I also had 2 negative ones over the years)

    Whatever it is we are all here for you if you ever want to chat x

     
    Old 12-18-2011, 02:02 PM   #4
    robinsc0417
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    Re: Abnormal MRI. Is it MS?

    Thank you both for replying. Bless you for taking the time to share.

    Be clear - I don't want to have MS. It's just been so hard to be so sick with no answers and doctors who say I'm making it up or drug seeking. Brain and spinal disorders are some of the least understood diseases with the most difficulty in diagnosing and treating.

    I guess I need to explore more medications. I'm on Cymbalta, Butrans patch for pain, hydrocodone prn, zanaflex prn and ambien for sleep. I just stopped taking the seroquel my GP prescribed cause I was gaining an awful amount of weight. I've been on migraine abortive and preventive meds and nothing has helped so far there (I've tried many). I know some triggers to avoid (unfortunately the hubby can't be avoided most times LOL!), but some can't be like strong weather fronts and THAT time of the month. I've been doing much better in that area.

    I will see if the test can be done in my town. The issue my neuro had with that is all tests I've had done here have been messed up so bad it makes any result suspect. The previous LP I had done here in the hospital they lost the orders to process it and then let the sample get too old to test. Ugh!

    This is a long tough road and pray for an answer or at least relief. It helps to hear from people who are going or went through something similar although aI would never wish this on anyone else.

    Thank you for your replies!

     
    Old 12-18-2011, 02:52 PM   #5
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    Re: Abnormal MRI. Is it MS?

    Hi again. Have you heard of Frank Bonikowski? He is a Neuro who specializes in MS in Corpus Christi. I just read about him today. He sounds like he might be a decent doctor, his ratings are high with his patients.

    Just thought Id throw that out there. A MS Specialist, can both diagnose and lead you to the correct doctor if they have reason to believe your problems arent MS related.

    I understand stress and symtoms. You are on quite a few drugs which also could be doing some of this to you. Hydrocodone and Butrans is a serious mix. Cymbalta, which makes you sluggish and sleepy and then Ambien, which has its own controversial side effects- are quite a lot to handle for anyone. I really hope your doctor is monitoring your dosage and considering switching you around on your meds. No wonder you are having extreme exhuastion! The cymbalta might be sending you over the edge. Have you considered using a different type of antidepressent, without the known side effects which Cymbalta causes?

    The overall body aches, could be that your over medicated as well. Im not saying you are (just to be clear) but youre definately taking alot of heavy medicine, which has known side effects.

    I really hope you find your answers, but the more you talk about what you are going through, the less it sounds like the answer may be MS.....there are hundreds of symtoms of MS and the MRI generally is the first line of defense in testing- yours isnt picking up anything abnormal from what you stated. Do you have copies of the report? For future information, start a chart of your own and keep copies of EVERYTHING! Films, reports, test results- all of it. Have you had blood work done too recently? Deficiencies in certain vitamins can also cause much of what you are describing.

    Best to you. Try to have a good holiday. Whatever this is, it will still be here after the New Year unfortunately....so, try to block it out and enjoy your time with your loved ones.
    NIkki
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    Old 12-18-2011, 04:49 PM   #6
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    Re: Abnormal MRI. Is it MS?

    I have checked the Corpus doctors. Unfortunately, I saw another doctor in Dr. Bonikowski's group 3 years ago and he was a real pill pusher (and come to find out 2 time convicted felon). With him, I ended up on 7 different medications, 5 of which all acted on seratonin, which was a really dangerous, possibly deadly mix. I requested to see a different doctor in the group when I started to have these new issues and was told no other doctor would see me unless it had been more than 3 years from my last visit. It had been 2 1/2 at the time. Most Corpus neurologists are in this group. I saw one outside that group who promptly dismissed me with dx of "overactive CNS" and told me there was nothing that could be done and no medications to help as he walked out the door. I barely could walk into or out of the appt. Very disappointing. That's how I ended up in Houston.

    I do realize I'm on a lot of medication, but without it (I try to go without periodically) I'm in so much pain I can't move and can only cry. Also, the spasms are so bad I can't sit still at all and my whole body spasms from head to toe. The exhaustion was there long before the meds. I agree they are probably not helping that matter!

    I really appreciate your input as a person with MS. I am so happy you are able to do as well as you do. I hope to be able to return to life as well someday lol. It helps to be able to talk to others.

    Happy Holidays to you as well!

     
    Old 12-19-2011, 02:44 PM   #7
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    Re: Abnormal MRI. Is it MS?

    Seroiusly? A convincted felon who has a practicing medical license? Thats very hard to believe. .unless he was found not guilty...his medical license would be revoked.

    Anyway, Dr. Bonikowski is the only doctor in HIS group who is a MS neurologist. I checked. He would be the only one I would see.

    Im not suggesting you stop taking any of your drugs, I AM suggesting that you are taking the wrong ones- or too high of a dosage. Your problems do not sound at all Neurological, they really sound like interractions of drugs. There are other drugs which will stabilize you without all the side effects.

    Best to you. I really hope you get the help you need. I do understand living with pain and not knowing what is going on is one of the most frustrating things in the world to live with. PLease, get answers from your new doctor soon!
    Nikki
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