Waiting and frustrated

[Chelle9778]

Hello, I have been having health problems for years. I was diagnosed with probable fibromyalgia in 2010 after struggling to get a doctor to even listen to me. I feel like I am slowly dying, losing little pieces of myself everyday. I saw a neurologist in 2016 and he told me he had no clue what was causing my symptoms. I have brain lesions but he said it could not be MS because I do not have spinal lesions. I am seeing a new neurologist at UVA in two weeks. I’m hoping to finally get someone to help me. My new primary told me she is 99% certain I have MS, that it fits my symptoms and history. I have not felt like myself in so long I don’t even remember what normal feels like.

I have a few questions. I would be extremely grateful for any help or feedback.
1. I feel like death sometimes but then I have days where I can function fairly well. Does that happen with MS?
2. If I am having tests during my good days will they still be able to tell if I have MS?
3. With RRMS do you feel normal between flare ups? I have better days but not normal days.

Symptoms:

* Extreme fatigue, no stamina
* Muscle stiffness and weakness in legs and arms especially on the right side
* Muscle spasms, cramps, and pain
* Trouble walking and standing

* Severe anxiety
* Constant need to pee even if I just went
* Rough, painfully dry skin
* Constipation

* Blurry vision and eye pain, mostly on the right side
* Double vision at times only in right eye
* Chronic dry eye
* Cold intolerance

* Low body temperature (sometimes drops to 96.3-97.3)
* Mix up my words constantly without realizing it
* Long pauses in the middle of sentences, usually because I forgot what I was saying or got confused
* Can't concentrate

* Can't remember anything and that is getting much worse
* Get confused often and easily
* Can’t learn/retain new information well
* Tingling and numbness in my hand and feet, worse on the right side

* Tremors (I call it having the shakes)
* Legs feel heavy, like I am trying to walk in deep water
* Sometimes hard to lift my foot, like it is too heavy
* Sometimes get a feeling in my right foot like something is stabbing me, appears suddenly and disappears suddenly

* Sometimes get lightheaded, my head feels funny
* Need naps daily, still feel exhausted like I didn't sleep at all
* Hand and feet often swell
* Near constant pain in my feet and ankles

* Near constant pain in my legs and hips, significantly worse on the right side
* Near constant pain in my entire back, especially in center around through to my ribs and my lower back

From previous MRI reports:

From 2007:
Two tiny foci of abnormal signal in the right cerebral hemisphere of uncertain clinical significance. Largest is 2 mm

From 2014:
There are a few foci of abnormal hyperintense signal in the periventricular white matter demonstrated on the T2-weighted and flair sequences. The most prominent lesions are located on the right side with the largest measuring 5 mm. These are nonspecific.

From 2016 with contrast:
Again visualized are a few foci of hyperintense signal abnormality on the T2-weighted and flair sequences. The largest lesion is again located in the right centrum semiovale and measures approximately 5 mm. This is unchanged. There are smaller foci noted in the bilateral paraventricular region. These appear stable. There is no abnormal enhancement. L4-L5: There is a focus of T2 hyperintensity along the posterior aspect compatible with an annular tear.


I’m just lost. At this point it would be a relief to get any diagnosis. I just want to know what is wrong with me so I can start fighting it. I have two grandsons under the age of two. I want to be able to enjoy them. Sorry for the long post, thank you for reading it. I would appreciate any feedback. Thank you.

[pennstater]

I have a few questions. I would be extremely grateful for any help or feedback.
1. I feel like death sometimes but then I have days where I can function fairly well. Does that happen with MS?
2. If I am having tests during my good days will they still be able to tell if I have MS?
3. With RRMS do you feel normal between flare ups? I have better days but not normal days.

Welcome Chelle9778.

I am sorry to hear you have been struggling for years. I am sure you are aware that many of your symptoms are MS symptoms. However, other diseases and conditions can also be the cause.

I am glad that you are following up with a second neurologist. It is great that you have an MRI history that can be used to look at changes over time.

Now to try and answer your questions.

I do have better days than others. Fatigue plays a big part in this for me. During periods when I struggle with fatigue, my symptoms are more prevalent. Likewise, as little as a 0.5 degree increase in body temperature can increase symptoms and make some appear that are not normally part of my baseline.

No one test actually diagnoses MS. Tests are done to rule out other diseases and causes. Once these are ruled out and MRIs and/or spinal tap support MS , then one may be diagnosed. So having tests done on better days really shouldn't affect the results. The neuro's clinical observations may be a little better on good days. For me, on good days, my balance is good. On bad days, the balance may be a little off and weakness more pronounced. Just make sure to let the neuro know your days vary and try to quantify what type of day you are having.

With RRMS, symptoms may resolve partially or fully once the relapse is over, or may not resolve at all. For me, my right arm/hand numbness never resolved, but the pain did partially. When fatigued or overheated, the pain returns almost to the level I had in a relapse. I have had an electric shock sensation down my spine with head movement during relapses, but it fully resolved after the relapses ended. Even with fatigue or heat sensitivity, it does not return.

I hope the above gives you a little sense how variable RRMS can be. The McDonald criteria is used in the diagnosis of MS. If you would like to learn more, here is a source:

http://www.nationalmssociety.org/Sym.../Diagnosing-MS
This is a more detailed guide for doctors:

http://www.nationalmssociety.org/For...osing-Criteria

Take care.

[Chelle9778]

Thank you so much! I had a bunch of tests to rule out other causes a couple years ago. I had a fantastic primary who went through a list of things with me that could cause my symptoms. She was testing me for everything she could think of, sometimes retesting to be sure after a few months. For example, I was actually tested five or six times for Lyme Disease. None of the tests led her to believe that was the cause. She believed I had MS after ruling out other things. Unfortunately she moved to another state suddenly. I was already frustrated and waited until I couldn’t handle my symptoms anymore before finding a new primary. My new primary said looking at my history and symptoms she is 99% sure I have MS.

The neurologist I went to back then thought my symptoms were likely to be MS at first too. Then after my MRI he said it was impossible for me to have MS because I had no lesions on my spine. He rubbed the bottom of my foot and my toes went up. He said that doesn’t happen with MS so he had no idea what was causing my symptoms but it was not neurological. I have since discovered that is not accurate at all.

[Seasha]

Then after my MRI he said it was impossible for me to have MS because I had no lesions on my spine.

Sorry you have been so rung out and worried - for good reasons! When I was eventually and accurately diagnosed, I did not have lesions on my spine - only in my brain. I'm encouraged to hear you are seeing a different neuro and gettng a second opinion.

Are you seeing an MS specialist? They are preferable as they know much more about this challenging disease. A spinal tap is helpful too.

Good luck to you with your scheduled appt! Keep seeking answers and asking questions until you are satisfied!

[Chelle9778]

I thought I was seeing someone at the UVA MS clinic but my appointment is upstairs at adult neurology with a physicians assistant specializing in migraines. I hope she will be able to help but I don’t know. My primary was supposed to be sending me to the MS specialist so I don’t know what happened. I am so exhausted and so depressed. I feel like it is just hopeless.

[Mamabug]

Welcome. I'm sorry, too, that you've been struggling for so long with health issues. Limbo is no fun; many of us have been there.

Regarding your questions:
1. I feel like death sometimes but then I have days where I can function fairly well. Does that happen with MS?

I don't ever feel that bad. Mostly, my symptoms are fatigue and mobility issues. Oh; and some anxiety but I manage that but avoiding choices that would cause it. I'm no longer employed so I'm able to control that.

2. If I am having tests during my good days will they still be able to tell if I have MS?

I don't believe that good days will affect test results. If you're in an MS flare, an MRI could determine that your lesions "active", but an inactive lesion is still a lesion. And, yeah; there isn't just one test that determines that you have MS.

Have you read about The McDonald Criteria for diagnosing MS? Here's a link to a graphic about it.
https://www.nationalmssociety.org/Fo...osing-Criteria

3. With RRMS do you feel normal between flare ups? I have better days but not normal days.

I haven't ever felt "normal" since MS, even prior to diagnosis.

[Chelle9778]

Thank you so much! At this point I just want a diagnosis, an answer. Something I can label and put together a plan to fight it. The not knowing is terrifying. My way of handling things has always been to educate myself and make a plan. The more information I have the more in control I feel, even if it is just an illusion. I am so tired of people thinking I look okay so I must not really be sick. It is such a relief to have a place where people understand. I’m so grateful I found this forum.

[KoKo]

Hi Chelle

Good luck at your UVA neurology appointment.

Hope you finally get some answers, and relief, this new year.

Let us know what you find out. We'll be here.

[NoraS]

Don't give up! It took me 40 years for a diagnosis, because I wound up with idiot neurologists, too. One told me I was too young, another said the only cause of my problems was that I was a smoker. I finally found one who took me seriously and diagnosed me. I only have brain lesions. Because it took so long, he also thinks I've progressed from RRMS to SPMS.

I also have days that are pretty good followed by some pretty bad ones. I've learned to pace myself and not get carried away on those good days. The house is a mess, but I can keep the pain and weakness at bay quite a bit by reminding myself to rest often even when I don't think I need to.

Your new normal is not what used to be. I've learned to not focus too much on the past (although I certainly have my periods of sadness) and instead take comfort in what I CAN do today. A good day for me now is one in which I don't fall when getting out of bed, can walk through the house without holding onto the furniture, make a cup of coffee, and get dressed. Anything beyond that is extra and cause for celebration. I sit when I need to sit, lay down when I need to stretch out or sleep, and I don't apologize to anyone any more when I can't do the things I used to do.

[Kimba22]

Hi Chelle,

Sorry for all you're going through. I know it's rough, but don't give up on your search for an answer. That's one thing this disease has taught me.

Some of your symptoms have nothing to do with MS (chronic dry eye, painfully dry skin, swelling), but could be indicators of something else. Sjögren's Syndrome is one of the MS mimics.

https://msfocus.org/Magazine/Magazin...-That-Mimic-MS

https://www.nationalmssociety.org/Sy...ns-to-Rule-Out

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5974632/

The neurologist I went to back then thought my symptoms were likely to be MS at first too. Then after my MRI he said it was impossible for me to have MS because I had no lesions on my spine. He rubbed the bottom of my foot and my toes went up. He said that doesn’t happen with MS so he had no idea what was causing my symptoms but it was not neurological. I have since discovered that is not accurate at all.

You don't have to have lesions in your spine to be diagnosed with MS. The positive Babinski reflex can/does happen in MS. I have it. Should've been caught earlier than it was, instead my PCP at the time just told me I was wearing the wrong style shoes when I told him I couldn't keep certain shoes on my feet. Regardless, it's a red flag for further testing to determine the cause.

https://www.medicalnewstoday.com/art...abinski-reflex

https://stanfordmedicine25.stanford....nski-Sign.html

That annular tear might be adding to some of your symptoms, as well.

As far as feeling normal, for me, haven't since this whole thing started, more than 24 years ago. Just have days that are better than others.

Even though you aren't seeing the person you thought you were, enough of your symptoms warrant further testing. Hopefully this visit will finally put you on the path for diagnosis. Best of luck, and please let us know how it went.

[Crazyguy]

It may be MS, it may not. Just a recommendation to you is to enjoy your grandchildren now while their young. No sense waiting for a diagnosis to live your life. I’ve been going on 25 years now with symptoms but no answers. Just do the best you can with the life you have. Enjoy it you only get 1.