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jc520 08-10-2014 08:45 PM

So far not MS?
Hi, I am currently seeing a neurologist because both my urologist and OB told me to get checked out. They both said my symptoms could possibly be MS. So far I've had neurological exam, brain and spine MRIs with/without contrast, a VER (evoked potentials eye test), blood work. Everything has come back negative except for brain MRI. The only information I have on that is that there was minimal white matter, but not diagnostic of MS. The neurologist wants to do a spinal tap and an EMG, but I'm going to have to wait a few months because we are having to pay a LOT out of pocket for these tests. Below are my symptoms at this point. I'm also wondering... could this be something like fibromyalgia? I am just really wanting him to rule out MS or just get to the bottom of it, but I'm not sure it's that simple. If nothing points to MS at this point will I need to be retested in a year, 2 years, 5 years from now?? Thank you for your help!

-bladder hesitancy
-1 major episode of numbness on entire left side of my body (including left side of my tongue), lasted 30 minutes
-several smaller episodes of numbness leaving my arms and legs feeling heavy
-weakness in legs
-all over pain, (take several advil almost everyday and still miserable)
-super fatigued
-difficulty with word-finding
-frequently cold when everyone else is not
-anxiety with loud sounds or too many different sounds
-feel pain easily (every little bump and bruise)
-neck/back nerve pain

MSJayhawk 08-10-2014 10:12 PM

Re: So far not MS?

:wave: Welcome.

If your neurologist is an MS Specialist, I would lean towards MS. If fibro was probable, you would be seeing another specialist. If you meet the Revised McDonald Criteria, a spinal tap is not required. A minimum of two lesions would be needed for the MRI. Also, about 5% of MSers present without lesions. A spinal tap is a test to eliminate an MS mimicry. If your doctor is waiting for this to confirm MS, I would encourage you to get a second opinion. There are MS Specialists in Houston who can assist you. There are no single, specific tests for MS. There are over 400 MS mimicries and the diagnostic process is used to eliminate or identify these mimicries. Again, you do not need a spinal tap for a diagnosis.

I hope you can get some answers soon. I am glad you found us! :angel:

jc520 08-11-2014 06:14 AM

Re: So far not MS?
Hi MSJayhawk, thank you for the info. I have been son confused throughout this diagnostic process. I am seeing a general neurologist in hopes that they will be able to look at MS as well as anything else it could be. When I first called their office they said they don't specialize in MS but they are a fine place to come for a possible diagnosis. Could it be that I have MS and it's just very early stages so not many lesions showing up yet?

Also, I am a 33 year old female, otherwise healthy exept for asthma and allergies.

MSJayhawk 08-11-2014 10:01 AM

Re: So far not MS?

No disrespect towards you neurologist, but an MS Specialist is the best doctor to evaluate the possibility of MS. A general neurologist usually lacks the experience of an MS diagnosis, especially if it was not part of their rotation in training. An MS Specialist is more likely to find things which relate to MS that will be missed by others. At the very least, I would ask for a referral or a consult via your neurologist with an MS Specialist.

There are over 400 diseases which can mimic MS. There exists the possibility that you do not have MS. The only real way to be able to arrive at a definitive answer would best be done by an MS Specialist. Just based on all your images and testing, you should be able to have a consultation with an MS Specialist and without a Spinal Tap. Should the MS Specialist request a spinal tap, then I would certainly encourage you to do so. About 85% of MSers who have had a spinal tap have a positive result for elevated o-bands, BUT non-MSers can also have an elevated o-band too. I have never had any elevated o-bands and fall in the 15% group of MSers who are negative.

Please note that every test is to identify something non-MS which can mimic MS. If the doctor eliminates all the MS mimicries, then, if you meet the Revised McDonald Criteria, you would be diagnosed with MS. If you eliminate all the MS mimicries but do not meet the Revised McDonald Criteria, you would be monitored to follow-up for the possibility of developing MS.

All in all, you are close to an answer, I think. I would seek out an MS Specialist and get out of limbo land as soon as you can. :angel:

jc520 08-11-2014 06:21 PM

Re: So far not MS?
OK, thank you. My neurologist is one of the best in the country so I assumed he knew what to look for. I just didn't know anything at all about MS 2 months ago. I'm learning as I walk through this process. I will think about taking my images and results to an MS specialist. Thanks.

Does anyone else on this forum have similar symptoms and nothing showing up on your tests as diagnostic of MS? What are the other common mimics? The only one I know of that matches my symptoms is fibromyalgia.

MSJayhawk 08-11-2014 08:33 PM

Re: So far not MS?

Fibro symptoms can overlap with MS. There are some MSers with both MS and Fibro.

As to your symptoms, there are web sites and medical books which will note MS symptoms as a percentage of affected persons, but this cannot really be "fixed". For example 5% of MSers can or have experienced MS seizures. This is a rarer symptom. If you play the percentages, you can have an expectation which may not become a reality:
-bladder hesitancy------ Some MSers will have the same, but others may experience bladder frequency increases. For me, bladder frequency increases when I am under a build-up of stress.

-1 major episode of numbness on entire left side of my body (including left side of my tongue), lasted 30 minutes----- I have had numbness. Usually, MS symptoms will last for 24+ hours. While you might be cognizant of the numbness, even though you feel that the numbness went away, it may have just lessened in intensity. When I had numbness in 1982, it was a dullness rather than a numb (no feeling). My neuro used a pin to poke and make marks according to my answers. When he was done he had a "map" on my arm and told me that my symptoms followed my nerves. I had no knowledge of how I was wired, but he did. I have also experienced complete numbness too and I still do.

-several smaller episodes of numbness leaving my arms and legs feeling heavy----- This is not an uncommon symptom.

-weakness in legs---- I can well empathize!

-all over pain, (take several advil almost everyday and still miserable)----- If OTC pain meds do not work, this would point towards the probability of a neurological concern.

-super fatigued------- Yes, a very common complaint.

-difficulty with word-finding------- mental cognition can be quite common. I have cognition difficulty. For me, this can often be mental exhaustion. I need to rest my mind to recover.

-frequently cold when everyone else is not----- this can be MS related. MS can cause your body's internal "thermostat" to be on the fritz.

-anxiety with loud sounds or too many different sounds----- I do not have anxiety with the sounds, but certain sounds irritate me. I have a pair of passive ear protectors which help me.

-feel pain easily (every little bump and bruise)----- This is not an issue I deal with.

-neck/back nerve pain -------very common for me.

About 5% of MSers present initially without lesions initially. With no lesions or a single lesion, you would have to wait. CIS (Clinically Isolated Syndrome) can be a diagnosis where you have experienced MS symptoms, but do not yet meet the Revised McDonald Criteria.

Common mimics of MS could be something like a deficiency of Vitamin D. About 15% of people who present with MS like symptoms are found to have a deficiency of Vitamin D. Anxiety can be an MS mimicry, but it can also be part of MS. Many of the mimicries can be found through specific tests. If your tests have been negative (normal), then most of these mimicries would have been eliminated.

If you search the Healthboards search bar (upper right of this page), you can find threads that fir with you. Also, hopefully, someone will be able to share herewith too. There is also a fibro board which might provide some clarity too. Fibro and MS could come in tandem.

Keeping a symptom journal can help you. You can use it to track symptom onset and duration. Your journal can also benefit you as a summary when you visit with your doctor. I was able to discover my avoidable and unavoidable triggers as well as to tryout my remedies. Your "triggers" can be unique to you and your tolerance levels will be uniquely yours too. Hoping for the best for you. :angel:

jc520 08-11-2014 08:50 PM

Re: So far not MS?
Thank you so much! You are so helpful to a person having some anxiety in this stage of the diagnostic process. Just having a clearer understanding of things helps a ton.

MSJayhawk 08-12-2014 07:33 AM

Re: So far not MS?

No worries. It is important to remember that anxiety, if uncontrolled, can worsen MS Symptoms or cause symptoms too present due to the anxiety. Exercise is a good way to rid yourself of anxiety, but if you have MS, you should keep your exercise in moderation and low-impact. (pool exercise, tai chi, yoga, walking, modified pilates). walking is something I have tried to maintain, but I have limitations. Anxiety is not my concern, rather, I walk to keep moving, to remain active. Gardening is also relaxing. If you have a family pet, university studies have found that a dog is quite therapeutic. Depression can also strike MSers. A dog can bring the same effective help in 20 minutes whereas meds require up to 2 weeks to achieve the same results.

If you feel you need help, do not be afraid to ask. Oral counseling/Meds/ or a combination of both or even learning a new activity can allow you to gain healthy benefits while ridding yourself of anxiety. Do not keep things "bottled up" because it will only cause stress in you and you do not need that. My MS Specialist in 1982 told me that stress was my lifelong enemy and that I needed to shed or avoid it. Fast forward to 2014 and I am still practicing what he told me. :angel:

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