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Old 07-25-2012, 06:40 PM   #1
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Hello

Hi, I was wondering your thoughts. I just had my MRI today and they included contrast. Won't know the results for 2-3 days. My GP has set me up for an appointment at the MS care clinic at the University on the 31st. I was diagnosed with having optic neuritis by ophthamologist a couple weeks ago. This was after having issues with balance and vision issues after getting warm or overworked. The biggest concern I actually had was that at times when working out I wouldn't sweat and overheat quickly. I would stop my routine and feel confused and off balance. Other issues were balance issues, not finding words, intense itching for no known reason, and spasms in my right leg. At times my arms are very weak or tire easily at a certain height. My legs sometimes are very heavy and don't have the energy to climb the stairs they had just climbed easily earlier in the day. There are other issues like in the past I couldn't stand on my toes or I would have this feeling of trickling water running down the outside of my leg. Small things that I felt insignificant and did nothing about. While it was a long time ago (9 years I think), I was seen by a neurologist for a hand tremor in my right hand (intention tremor) and intermittent extreme weakness and fatigue. This neuro literally blew me off and treated me as if I was a lunatic. No tests or anything. However, I feel like this was the start of my symptoms which were actually quiet for at least 8 years. Shortly after my neuro visit 9 years ago I was diagnosed with rheumatoid arthritis and started medications.
Now the only issues are mostly heat related or the result of overworking. What happens at these times is my right eye (the one with the optic neuritis) would blur slightly, I walk a bit funny and short steps due to either stiffness or balance issues, and I stop mid sentence not knowing a simple word or the occasional zap down my arm or across my face. Fatigue has followed me around for a long time but every so often even that will let up. It has been better since I have been working out. I found out on my own that I am heat intolerant and have to take steps to keep cooler prior to working out and right afterwards. Usually I will take a cool shower then workout in front of a fan and then shower if overheated. I carry around an ice pack at work and that too seems to help some. If not then I take a cool shower there. Either way once I am cooled I feel just fine again unless I just need to take a nap.

What I was wondering is. If my MRI is normal will the doctor just assume I am a nut ball like the last one? Are they sending me to the MS care clinic because they too feel this is MS? I don't know if I can handle someone insinuating that I have some psychological issue because they don't have an answer. Heck for all I know this could in some way be related to Rheumatoid arthritis and not be anything new.

Well, thanks for listening. I just really needed to write something out.

Theresa

 
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Old 07-25-2012, 07:02 PM   #2
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Re: Hello

Welcome.

If you have had Optic Neuritis (ON), then your MRI will have to show evidence. While a general neurologist might dismiss you, an MS Specialist should not.

You have RA and are taking meds. The MS Specialist will have to look at your RA and meds in dismissing your symptoms which may be caused by these.

ON on its own can be a separate disease. ON can also develop into MS and be part of MS.

You are not a lunatic and please do not allow any person or doctor to dismiss you in such a manner. Your symptoms are real and need to be evaluated. The MS Specialist will evaluate you following the Revised McDonald Criteria.

Please stay strong. You are not alone and we will be here while you journey through limbo land.
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Old 07-26-2012, 04:23 AM   #3
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Re: Hello

Hi and welcome to healthboards. A MRI may or MAY NOT show Optical Neuritis.....depending on whether or not they are MRIng the optical nerve, or just the overall brain, it very well may not show up. Optical Neuritis is determined by looking behind the eye at inflammation and does not always leave a lesion like a classic MS lesion.

HOWEVER: your symtoms are classic of something neurological being wrong and there is a very good chance that SOMETHING will show up on the MRI. You did not say if you were having an MRI of just the brain or the spine as well. If it were MS, lesions hide in the spine as often as the brain. Going to the MS center is a very good idea; there, they will order additional testing and review your history and what tests you have already had done. Unfortunately, there is no simple test for MS. ITs a matter of ruling out everything else before they can determine yes or no.....Interestingly enough, many people are wrongly dx with RA and find out it is MS. The two diseases mimic each other very often. My mother has RA. I have MS. We have extremely similar symtoms/ pain.

I had very simliar symtoms as you described and people wrote me off . When I woke up with a numb and tingling hand, my GP thought it was a pinched nerve, he sent me for a CT scan. It was there, that abnormalities were picked up, I was referred to a Neuro- and a MRI (of everything) was ordered- and MS diagnosed. I have over 60 lesions on my brain. Sounds like a lot- but I still work fulltime, you would never know it to see me- I just finished Post-Grad school with honors and my job includes traveling and alot of pressure. So, dont let the number of lesions fool you!

Youre on the right track. Go to the MS center and see what happens. It is highly unlikely that there, they will poo-poo you. Please let us know what happens? And hang in there, if it is MS, youve already seen what it can do to you....those symtoms you described, are classic!

Nikki
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Old 07-26-2012, 05:49 AM   #4
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Re: Hello

Thank you both for your response. The ophthalmologist saw an area of inflammation on the optic nerve. The MRI did include the eye/orbit area as well and also included the neck. I get nervous because after the neuro blew me off and treated me like I was a crazy person I literally went into hiding. I started to believe that maybe I was the one that caused this and how nuts is that. I didn't go to a doctor for another year or two until I got pretty sick with pain and weakness. I found a new gp who sent me to an immunologist who determined that it was RA and have been being treated by the top rheumatologist here in Louisville. Wow, wouldn't that be scary to have been treated by these risky drugs only to find out I didn't actually have RA. I do have joint swelling and changes on radio graphs that would indicate joint disease of some sort so hopefully not. For the most part these symptoms that I do have are annoying at minimum. I have only actually fallen once as a result of being off balance and I fell over a gate, but the other times I am able to catch myself. I was questioned at work because while talking to someone I literally started falling off kilter to the left and I grabbed onto the table like "woah". It was as if the boat/building shifted.

I intend on staying at work. I love my job and have been doing that type of work for 21 years. Some days are harder than others but I seem to manage. I don't like that I am considered the person to go to if you have a question. Theresa's knows everything to end up talking to the person and forgetting what you are trying to say. I used to be quite intelligent and really I don't feel like that anymore. Some days I stutter so bad that I don't even want to talk at all. Then it is all good and back to normal. And how come I can't remember names? I have been failing miserably in remembering the name of a person. Actually, I know it it just won't come out. I can see it and taste it but I can't say it. Does this make sense? Does anyone else have issues with name recall?

Thanks again I appreciate all of your responses.

 
Old 07-26-2012, 07:10 AM   #5
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Re: Hello

I would say you are heading in the right direction. Please be aware that the MS diagnostic process can seem like it move like molasses in January, but if the MS Center is following the Revised McDonald Criteria, you will arrive at answers.

Stay strong! You might need to adjust your work environment, especially if you get a diagnosis. Much of the decision is up to you. If you operate any equipment or you could endanger yourself, co-workers, or customers, then I would suggest you seeing your EEO representative about reasonable accommodations in your workplace. If you decide to apply for disability, you should do so after making sure all of the requisite tests are in hand and your condition cannot be reasonably accommodated.

Again, we are here for you. There are many of us who have been with MS for a few years to decades. We are happy to share that which we have learned.
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Old 07-26-2012, 10:23 AM   #6
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Re: Hello

I have the exact balance and memory issues. Just 5 minutes ago I was walking from the parking lot and "listing" to the left. It is always to the left for me, don't know what that means, but it is consistent. I also sometimes have difficulty remembering words and/or names. I was introducing my staff to a large group and I actually couldn't come up with a name (of my own staff member!). I'm getting good at covering up - and when I asked my husband if he notices, he said no.

Good luck to you - and just know, you are not alone! We deal with whatever cards are dealt to us, and attitude seems to be key.

 
Old 07-27-2012, 06:15 PM   #7
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Re: Hello

Thank you all for your input. No word yet on results. They did say 2-3 days but was hoping to hear something today. Not so lucky. I called and left a message with the nurse and they always call back positive or negative and no call back so I shall wait over the weekend. I would just like to know if maybe I can cancel or reschedule neuro appt. Not sure even if this was positive that I would do too much about it right now since most of my issues are with heat exposure or being overworked. I can still function and I haven't fallen in a good 4 months or so. I just want to shut off anything that could wait till later. I have a very very busy next several days ahead of me and don't want to have to think about anything else but my job right now. blah blah blah.

Anywho...ttyl

Theresa

 
Old 07-27-2012, 07:31 PM   #8
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Re: Hello

Woulda, coulda, shoulda are regrets that some MSers have experienced. I put my symptoms on hold when I dismissed them as nothing or simply clumsiness due to puberty. Looking back I think I would have been in better shape with my life plans had I known.

I would encourage you to run through the diagnostic process. if anything, you could get a clean bill of health and have something easily treated. You also establish a benchmark which can be compared later if needed. Your "race" to the finish line is closer than you might realize. I would encourage you to see this through to a definitive answer.
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Eternally blessed and eternally optimistic!<><

 
Old 07-31-2012, 03:08 PM   #9
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Re: Hello

Okay, so no MS diagnosis at this time. This neuro seemed to be totally uninterested in anything and didn't bother looking at the MRI himself. He also was not part of the MS clinic because my GP's nurse only sent me for "dizzyness". He didn't have the MRI report but finally got it and said the brain looks good. You are fine you just have vertigo and probably optic migraines. However he wants me to come back in 2 weeks and then repeat the brain MRI in 3 months. No other tests were done in the office other than walking. No feeling tests even though I told him about numbness and no vibration tests. He didn't care a bit about the itching episode I had or the fact that when I get hot is when these symptoms get worse. Should I accept that all is good and stop looking? Should I really even go back to this guy who made me feel like I was wasting his time? I asked if this could all be related to the RA and his response was it isn't likely related to the medications but I am not a rheumatologist. Then when I asked him about the optic neuritis he told me he wasn't an ophthalmologist but it didn't show up on MRI. Would it show up so many months out? Any why no other tests to see about feeling and numbness?

 
Old 07-31-2012, 03:56 PM   #10
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Re: Hello

I would say the neurologist you saw did you a great disservice. I would encourage you to see an MS Specialist who will read the tests and images themselves. I think an MS Specialist would have delved deeper into your case.
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Eternally blessed and eternally optimistic!<><

 
Old 08-01-2012, 01:39 PM   #11
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Re: Hello

So, this is how ridiculous my neuro was. He didn't bother to tell me that the radiologist recommended an MRA for a suspected aneurysm in the circle of willis. Sure its cool to not tell me that we will just see what happens. Talked to my GP who is setting me up with a new neurologist. This guy was a quack.

Thanks

 
Old 08-01-2012, 01:58 PM   #12
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Re: Hello

It is a blessing that your GP is looking out for you! Stay strong!!
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Old 08-01-2012, 11:13 PM   #13
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Re: Hello

Thank you MSJayhawk for your information and concern. After talking with my GP and doing some in depth research I feel it is important for me to get a cervical and thoracic MRI done. Should I ask my GP to order this? Based on my symptoms with gait issues (tripping, balance, short steps, and kindof dragging my legs) and mostly the result of muscle tightness and spasticity and the tightening of my muscle on the right side of my back and chest including the extreme itching that affected my legs and mostly my thighs I feel like the search in diagnosing or ruling out of MS is important.

It is hard to describe how it is that I walk. In the beginning of the day as long as I am not tight I do well but as the day drags on it is like I am lifting my legs from my hips. They seem so heavy and tight and they start to get sore. I am or was a very active person. I work out 4 days a week and it includes weights and I shouldn't be so tired by the end of the workday that I can barely move my legs. It doesn't make sense to me.

The tightness in my chest doesn't happen often and I feel it is muscular. It seems to start at my spine and wrap around to my sternum. It restricts movement to some point but does improve within an hour or so and sometimes less. If I take a deep breath I can feel the muscles attempt to expand but it doesn't necessarily hurt. I so wanted to ask the neuro I saw but he wasn't interested in anything I had to say as his day was over 1 hour before he came into the room to see me. That tightness I feel there is what it feels like around my hips and thighs and sometimes my right calf when I am getting overly fatigued.

I don't know it seems I can't stop looking for help in this matter yet. My fear is if I ignore it based on the neuro's response to saying no MS because the MRI of my brain is clear then I could really risk mobility in the future.

How can I just be more assertive when I see a doctor instead of shutting down because they don't want to listen?

Frustrated here... will be talking to GP again tomorrow and see about this possible aneurysm... hopefully it isn't anything but it could explain the headaches, eye pain, and dizzyness.

Thanks again I really appreciate you, all of you who come to the aid of people who feel like they may be crazy because a doctor wants to dismiss you.

Theresa

 
Old 08-02-2012, 07:45 AM   #14
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Re: Hello

no worries. Your gait sounds like you have been observing me! LOL. When I awaken, my gait is a shuffle as my "motor" idles. It takes up to an hour for me to get momentum. If I nap, the whole process starts over. When I get tired, it shows in my legs very quickly and my left leg begins to drag. As I get even more tired, other problems from hand trembles to brain fog can start.

I think it sounds like the ever popular MS Hug has you in its grip. Compared to my other problems, the MS Hug is something I shrug off because it pales in comparison to my other concerns. I tell people it is my MS's way of showing it loves me.

Your GP can certainly order an MRI of your cervical and thoracic spine, especially if they have not been done. If it has been more than 2 months since your brain MRI, I would ask for a new MRI from your head through your thoracic spine.

If you have a possible aneurysm, this is something that should be able to be seen A CT and an MRI are both used. IBM and the Mayo clinic developed a technique using algorithms to find over 95% of aneurysms within 10 minutes of a scan and no catheter was needed. This technology was released in 2010; therefore, you should be able to get good results at most facilities (I think!). Since an aneurysm is a possibility according to your doctor, then you might as well have a new MRI from your head through your thoracic spine.

Sometimes we need someone to be our eyes and ears and even our voice. If there is someone who can go with you to your appointments, ask them to help you advocate. If you go alone, write things down and read from your list. Some doctors may "shut down" but if you are the "squeaky wheel" they will listen. If you feel your situation is not being handled correctly, tell them.

I think that if you are seen by an MS Specialist you might feel different. The MS Specialist is interested in details and symptoms that other doctors might ignore. I know that it is frustrating to encounter doctors who dismiss you. After my diagnosis I had to keep myself from going back to say "Ha I told you so"! Your experience with dismissive doctors will be repeated by fair weather friends and family. It is part of the burden we bear when we have MS. The burden does get lighter, I think, because when we have a diagnosis we have evidence on our side to deflect the naysayers. Staying strong and dismissing the dismissers makes for a blessed life, I think.
__________________
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MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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