Some smptoms come and go?

[onlybridget]

Hi, I'm new here and not (yet?) diagnosed. Just a brief bio - I am 37 and have been having an increasing litany of symptoms for the last 8 months.

It started with back pain, then over time has grown to include severe fatigue, trouble walking after approximately 500 ft (legs turn to jelly and feels like walking thru quick sand), then leg stiffness, mild urinary incontinence, hot flashes affecting just my face and neck, numbness in hands, feet, and face, and now I am having random muscle spasms which cause my foot to jump. its much worse on my left side but I have issues on my right also like blurry vision. I saw an eye doc who sent me to get an mri and see a neurologist.

My neurologist appointment was 2 days ago and to say it went badly is an understatement. The doc cut me off every time I spoke and when he was listening he would close his eyes and act like he was sleeping. He argued with me about the frequency and duration of my symptoms because I couldnt clearly say when they began or ended. Some never ended, some would change in level of severity so I wouldnt know exactly when they came or went.

Some like brain fog and confusion just depend on stress level, room temp etc. He said after reading 2 lines of my 2 pg mri report and not looking at films that there is no chance I have MS. Then he says I have trigeminal neuralgia but he cannot prescribe anything for it because ofthe pain meds I am on that I have been taking temporarily since the back pain started. Then he cut me off mid sentence to take a call so I walked out.

Sorry to ramble but I am going to see another neurologist and I want to be prepared for the frequency of symptoms question. I dont know for sure if I have MS but I take B12 already and have been tested for diabetes. I just think that IF I have MS that it MAY be PPMS. And I am curious if any of you have some transient symptoms. Also, I believe I do also have trigeminal neuralgia which can happen with MS. Do any of you have TN? Thanks for reading!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[onlybridget]

...just to clarify, I am not looking for a dx because I know you cannot give one. I just am curious about your symptoms and if any come and go. Thank you

[SNOOPY]

Hello onlybridget

It started with back pain

If you have not had a MRI of your back then I would suggest speaking to your Dr. about getting one. Back problems, such as herniated/bulging disc,ect, can cause neurological symptoms. However, mechanical problems such as these are not related to or caused by Multiple Sclerosis.

What did your eye Dr. say about your blurry vision?

after reading 2 lines of my 2 pg mri report and not looking at films that there is no chance I have MS.

I can only assume your Neurologist read the "impression" section of the MRI report. This section sums up what was found, if anything, on the MRI. It appears, based on what you wrote, your MRI report did not show any indication of Multiple Sclerosis.

I believe I do also have trigeminal neuralgia which can happen with MS.

Trigeminal neuralgia can be a stand alone diagnosis and not be related to Multiple Sclerosis. Some with MS also have TN.

http://www.ninds.nih.gov/disorders/t..._neuralgia.htm

I just think that IF I have MS that it MAY be PPMS.

I am not sure what you are basing this on The symptoms those of us with MS have has no bearing on the "type" of MS.

Some like brain fog and confusion just depend on stress level

Unfortunately, brain fog, fatigue and confusion is a very common side effects of stress and anxiety. This is true for anyone, with or without health problems.

There is no symptom(s) that are unique to Multiple Sclerosis as many other things can cause the same or similar symptoms as seen in this disease. Further testing would be a good idea and if you are not happy with your current Neurologist then being seen by a new Neurologist may be more beneficial for you.

This link will explain the what other causes need to be ruled out:
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

[SNOOPY]

...just to clarify, I am not looking for a dx because I know you cannot give one. I just am curious about your symptoms and if any come and go. Thank you

Anyone with MS can have symptoms that come and go, although this is most common in relapsing/remitting MS.

[onlybridget]

Sorry I think I phrased my back story poorly because I was so focused on the symptoms. It was my retinologist who suggested I have both trigeminal neuralgia and MS. I know ppl can have both I was just curious if you have both. He said the TN and not ON is causing vision issues so I wasnt expecting to have ON. One factor that he said was important was my reaction to heat. I have had poor reactions to heat for years but lately it has gotten much worse. Its heat that affects anything brain related.

The reason why I had a suspicion of ppms is because my symptoms have been rather insidious...no clear break. I know there are tons of things I could have and yes my brain mri is clear but I am just trying to find an answer and I already went to a spine doc who could not find a reason from an xray and didnt send me for a spine mri. I have been bounced around docs for months. The retinologist was first doc to look at the whole problem

[SNOOPY]

Multiple Sclerosis is a disease of the Central Nervous System (CNS) this includes the brain, spinal cord and optic nerves. Damage from this disease can affect any or all of those areas.

From personal experience a x-ray does not rule out mechanical spine problems. If the x-ray didn't show anything and you still have back problems a MRI should be the next thing to do. In addition, a spine MRI is used in the diagnostic process for MS.

Being heat sensitive does not necessarily indicate MS as many people are heat sensitive and deal with symptoms related to the heat.

I'm sorry, I am not trying to say you don't have MS. There is a diagnostic criteria for Multiple Sclerosis, The McDonald Criteria:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS

A major part of the diagnostic criteria is based on MRI evidence.

Take care

[SNOOPY]

I know ppl can have both I was just curious if you have both.

I'm sorry, I did not address this question in my last post.

I have never experienced TN and I have had MS a long time. There are those on MSWorld who do deal with TN as part of their MS symptoms.

[onlybridget]

Being heat sensitive does not necessarily indicate MS as many people are heat sensitive and deal with symptoms related to the heat.

I know this and I'm not trying to get medical advice as I know no one but a doctor can diagnose me. I was merely frustrated by a medical system (and honestly a society) that is more eager to argue and prove someone wrong than to look at evrry possible option. I would have totally understood the doctor suggesting a spine MRI or any kind of answer other than "well, sucks to be you." I am sure it must be frustrating dealing with hypochondriacs and the overly dramatic but there are many folks just looking for a kind word and a little advice on navigating the system.

Coming here plus that neurologist did teach me one thing, that until or if I get worse then I can do more searching. That my symptoms combined are not as bad as dealing with fighting the uphill battle of trying to find a dx. I am just sick and tired of constantly going from one doctor to the next with no results.

I dont need to miss work for doc appts and get yelled at by my coworkers. I dont need confrontational jerk doctors who make me feel like dirt. And I dont need strangers arguing with me with facts I already know. I will just keep trying to get as healthy as I can and if I get worse I will deal with it when I have a symptom visible enough to warrant some actual help or even human kindness.

[Seasha]

Hi bridget and welcome!

Sorry you are having problems with symptoms and a neuro who is insensitive. Many of us have walked in your shoes. Some of your sx sound like MS and I'm sure you are frustrated by not getting answers. (I had to wait 10 years before I got a dx!!)

If you are thinking of going to another neuro, one who specializes in MS will hopefully know more, in my opinion. However, not all MS neuro's are not created equal. I went to 3 before I found the right fit! Shop around~

Hopefully someone will get to the source of all your problems, regardless if it's MS or something else. Let us know how the battle goes!

[22cyclist]

Bridget: I have MS and TN bilaterally which is actually more common in MS. TN though is usually caused by a vascular anomaly that can be treated surgically. I agree with SNOOPY that you need to check into mimics.

Get another neurologist, one who will work with you on finding those mimics and treat you.

Good luck
Lisa

[Mamabug]

Actually, I really have not had symptoms that come and go. MS is a progressive disease. When symptoms that have not been present for awhile return, for me, it is an indication that I am in a relapse. For some people, it might be a pseudo-relapse, which is when "real" symptoms occur, due to a stressor, such as heat or something.

I hope that you can get dx'd soon, so that you can get on a DMD. If your recurring symptoms are, in fact, flares that are occurring, perhaps a med would help you to better control your MS.

[lori]

bridget,

that neuro did sound terrible. i had symptoms similar to yours; left leg weakness, mild incontinence. my leg would drag on increasing shorter distance. people would ask me why i was limping.
i was diagnosed PPMS on the abnormal cervical spine mri and VEP (have never had vision or hearing problems though).

I think heat could affect how often and badly you experience symptoms. It is difficult to describe exactly how you feel and a good doctor will ask questions in a patient and hopefully even caring manner. and yes more than a few people on this site have TN and MS.

if you give your location on the main page you can get a lot of feedback on good neuros in your area. i've found people at msworld generally to be extremely helpful and insightful.

sorry you've been suffering and my best wishes on finding answers and help,
lori
ps. the best thing i did when still able was yoga. it can help no matter the dx

[J-Bo]

So sorry to hear that you're having such a terrible time, onlybridget. I've had a similar route, with even MS specialists telling me definitively that I don't have MS. They were wrong. They were wrong over and over and over again.

At the time, I had never heard of PPMS, so I believed them--after all, I wasn't having any clear relapses or remittances, and that's what MS is, right? It was only when it occurred to a doctor I saw in another city to take cervical and thoracic MRIs that I was finally diagnosed.

Of course nobody here can say what is going on with you, but you know there is something very bad going on, and you can't give up trying to find out what is it. Good luck to you. I hope you don't have MS, but I know that I felt relieved when I finally got a diagnosis of a "real" disease. It's better knowing that I'm not a complainer, not crazy, not lazy, and have an explanation when people want to know why I can't do this or that.