In limbo...waiting

[shannonmalex]

Hello,
I'm Shannon. 29 y/o grad student in Oregon.
I guess I can start at the beginning... around the end of September 2017, I had what I thought was a very serious, debilitating days long panic attack. I had recently started a new anti-anxiety medication and was in the thick of it in graduate school so it was easy for me to just chalk it all up to extreme anxiety. Although, the physical symptoms of this attack were unlike any I had ever experienced; I could barely move my hands when typing (a really difficult thing for a full time student), the left side of my body was super sensitive to heat (washing the dishes, taking a bath, etc.), and the fatigue and pain were extreme.

I, of course, made an appt with my PCP and he said "oh, it's just anxiety. Just try to relax and get through grad school and everything will sort itself out". After a few more weeks of slowly healing from the symptoms, I was like OK- it was anxiety, let's move forward. I started to head back to the gym, started to meditate, and tried to just move on with my life again.

The fear that it was something else never quite left though; something just didn't feel "right". My left side was just never the same; I could feel one hair fall on my arm it was THAT sensitive. I noticed every little thing that happened to that side of my body.

The times that I did feel good enough to go back to the gym or to yoga, my whole left side just did not cooperate the same as it had; it was tight, rigid, and fatigued easily. I started to see a physical therapist, acupuncturist, and chiropractor; getting different responses from each. I felt like I was drowning in medical appointments and school work and I could barely keep my head above the water.

In January 2018, I was speaking to my psychiatrist about some of my frustrating physical symptoms and I mentioned the constant tingling in my left foot and the fatigue of my left side. He said, "Has your PCP ever mentioned a brain MRI?"; I said "no, actually he has not. Should I ask?", and so I did. The end of the January, I had my brain MRI that did show some nonspecific T2 intensity flairs, more prominent on the right side. All my PCP said is "I don't know what this is, we have to send you to a neurologist, it could be MS". Of course I was terrified, but also wanting to get to a diagnosis and start healing.

I finally got in to see the neurologist at the end of February and he did not seem concerned with the flairs. He said they did not look "MS-like" but he would do a spinal MRI and LP to rule it out. Fast forward to now, and I have had both the spinal MRI and LP come back normal. The neurologist is basically sick of me at this point, but I still do not feel that my body is right. Constant left sided fatigue, foot and leg tingling to the point that it has changed my gait. Calf tightness, hamstring tightness, shoulder fatigue- all left sided.

I am just frustrated and really unsure of how to keep pushing for answers. I feel that my neurologist just wants me to wait until something happens again, but I want answers now (I know that that is not always possible and that MS is very difficult to diagnose).

Did any of you have normal LPs and spinal MRIs before a diagnosis? Maybe I am barking up the wrong tree entirely, but I just needed a place to put my thoughts down. My head has not been the safest place lately.

Thanks for reading.
Shannon

** 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. **

[mathgirl24]

I could have almost written your post. My story is so similar to yours. I'm still in limbo as well. Mostly left side is affected for me. I also have coordination and balance issues that pop up when things are at their worst. I have one lesion that is nonspecific on the right side of my brain. LP and spinal MRIs are normal for me too.

I have an appointment with an MS specialist in June. But until then, I won't get any answers unless something really gets bad. I've kind of gotten used to the waiting but I was very anxious in the beginning and wanting answers so bad.

All I know is that something is definitely going on with me and most likely you too. Don't stop pressing for answers but at the same time, we both have to be patient until enough medical evidence presents itself to make a diagnosis of whatever it is even if it's not MS.

I've found lots of support here especially over on the chat room.

[SNOOPY]

Hi Shannon,

I had my brain MRI that did show some nonspecific T2 intensity flairs, more prominent on the right side.

A "flair" is a MRI sequence. The MRI report has an "impression section" which will give possible causes for findings, but is not a diagnosis.

Non-specific brain lesions can have many different causes and not necessarily due to MS. At this time, based on the information you provided, you do not meet the diagnostic criteria for MS. Information about The McDonald Criteria:

https://www.nationalmssociety.org/Ab...o-Speed-the-Di

Numerous conditions have similar symptoms as MS:

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

Unfortunately, there is no single test, by it's self, that can give a definitive diagnosis of MS and there is no symptom exclusive to MS.

You might try working with your PCP to try and figure out what is causing your symptoms. If MS is suspected MRIs can be re-done every 6 months to a year to see if there has been any changes that might suggest Multiple Sclerosis.

[mathgirl24]

Hi Shannon,



If MS is suspected MRIs can be re-done every 6 months to a year to see if there has been any changes that might suggest Multiple Sclerosis.

This is what I am doing. Going to have a repeat MRI before I go see the MS specialist. Unfortunately, diagnosis of what ever it is is going to take time.

[pennstater]

Did your docs run any bloodwork?

[shannonmalex]

Yes- I've probably had the a full CBC panel and metabolic testing done 3 or 4 times over the 7 month period.
I also had an EMG of the entire left side late January to check for a pinched nerve.
The DX report from the Brain MRI said "demyelinating disease could not be ruled out based on images alone", so the neurologist did the follow up testing.

I'm thinking I just need to be patient and either hope to get better slowly or just eventually get a diagnosis. I'm moving back to the Midwest to be closer to my family once I graduate, so I'm just planning to touch base with a neurologist back home and then see what they think and go from there.

Thank you all for sharing your thoughts with me; I deeply appreciate it.

[stevemills]

Hi there! Sorry you're going through this. I am also in limbo, so I can somewhat relate.

I could barely move my hands when typing

Both hands or just the left side? You seem to mostly have trouble on the left side which is a key piece of information.

I could feel one hair fall on my arm it was THAT sensitive. I noticed every little thing that happened to that side of my body.

Yes, but you're also on high alert for it... you're hyper-aware of your body now. I fell into this trap myself. For example right now my entire right hand feels like there is a rubber glove on it. I've been able to "tune it out" over time, but if I remain actively aware of my right hand then the numbness of it feels more intense and I can begin to differentiate the more peculiar feelings from it. Same with my twitches - they are constantly going and people will even point them out to me, but I don't notice them unless I focus on them. The more you focus on these symptoms, the more you'll notice transient/paroxysmal problems with your body.

The neurologist is basically sick of me at this point, but I still do not feel that my body is right. Constant left sided fatigue, foot and leg tingling to the point that it has changed my gait. Calf tightness, hamstring tightness, shoulder fatigue- all left sided.

I'm really sorry for this. I have formed a disgust for the neurological professionals. In my opinion they are the worst of medical specialties. The brain is the ultimate mystery and some neurologists think they are god because they study the brain... makes them very arrogant and hard to deal with. When they come across a patient they can't figure out, it's like a blow to their ego because they no longer feel like god.

If you have good insurance, then blood tests are cheap and easy. I would push the PCP or neurologist to do more blood tests like an ANA to test for Lupus/Sjogrens, RA for rheumatoid factor, and check vitamins (Vitamin D, B6, B12, etc.).

Again it seems like the vast majority of your symptoms are on the left side of the body. There are many things that can cause this of course and i'm not a medical professional but one place I would start researching is vascular problems like vasculitis, vertebral or carotid artery compression/dissection. Those are typically ruled out with imaging (MRA) of the veins/arteries around the head and neck.

[shannonmalex]

Steve,
Thank you for the response.
I've had all of the ANA and Rheumatological tests done by my naturopath and PCP. None of them have found anything.

When you mentioned that my symptoms being mostly left-sided is a key piece of information, why is that? Does that relate to the vascular issues you mentioned?
I, too have been curious about vascular issues. I went to see a functional neurologist last week just because I felt desperate and was unable to speak to my neurologist for several weeks, and he spent two hours doing different kinds of neurological tests. He has some machine that was able to measure the blood flow between my right and left side and my left side is getting about half of the blood flow that my right side is getting. Not sure if this is quackery or not, but I'm interested in the way he is pursuing this and keeping my options open.

Have any of you ever been to a functional neurologist before?