At my end...any encouragement would be appreciated.

[LillysMommy223]

Hi everyone who reads this, I'm a 24 yo female with a 2 1/2 yo toddler. I live in a town near all my husbands family and hours away from mine. Everything this last year I feel has lead me to this point and is showing to be all connected. I don't want to give the full back track because there is a lot of medical and neurological issues that have come and gone over the year. But the most recent is this...

So over the last couple months I have had EXTREME fatigue and literally I mean extreme. Most days (not all) I wake up after a full nights rest and it takes me at least two hours to get past the waking up phase. I feel lightheaded and really sluggish can barely function, sometimes it takes me another 2 hours to find energy to do anything (remember I have a toddler). About 2 months ago I started getting shifting in my eyes where they just kind of move side to side uncontrollably. Reading is the worst.

Then came searing pains through my legs and occasionally my arms. They come suddenly and literally take my breath away. Sometimes last all through the day others just a minute or two.

My finger tips will go numb or my whole lower back has a band like shape where the whole area goes numb and wraps around my abdomen.

Last 3 weeks: my legs have had CONSTANT pins and needles. Sometimes it feels more like a buzzing sensation but when I sit to rest or at night it's full on pins and needles. My left leg with go numb where if my husband is rubbing it I can barely feel his had. Very uncomfortable.

I have had brain MRI and there are no lesions but my last appointment from last week with my neurologist she said she still believes I could have MS. Given my family has it.

I'm scared and young and can't function! Help???

[bree2013]

Hi LillysMommy,

So sorry you're dealing with these scary symptoms. It's hard enough being a young mother of a toddler but to have the fatigue and other issues - 10 fold.

All I can say is continue getting any and all tests your doctor wants to help figure out what's going on. It could be MS -- then again maybe not. Even with the history in your family, it could be something other than MS.

Limbo land is tough, but hang in there. Try to take care of yourself during this stressful time -- physically and emotionally. Enjoy your baby and family. Eat well, exercise, drink enough water, take your vitamins. Ask your doc to also test your B12, vit D & thyroid.

There are a lot of very helpful / informative people here -- come back and let us know how you're doing.

Good luck,
Bree

[Blancaboo]

Is your neurologist going to do any more testing? I have those same pins and needles symptoms and the extreme fatigue. I understand how exhausting and frustrating it can be. I am still waiting on a diagnosis. My neurologist was not interested in doing any further testing. I had to push to get him to do anything more for me. I encourage you to push your neurologist to continue looking for the answer.
Hang in there.

Hugs.
Michele

[Marco]

I am sorry to read about your situation. When you are not sleeping well the fatigue makes everything, including symptoms, worse. I would focus on trying to fix your sleep issues and see if some of the other symptoms are reduced.

Do you live in a hot climate? Summer temperatures can bring on fatigue as you describe. High temperatures can also impact your sleep causing nonrestorative sleep. Also, this may seem silly, but are you drinking enough water? It is extremely important to have adequate water intake, especially in the summer months.


Did the neurologist prescribe any medication for the pain symptoms? Did they believe the pain was neurological in nature? With or without MS, Neurontin or Lyrica might be starting medications for such pain symptoms. I would call the neurologist back (nurse's line) and let them know the pain continues and you need some relief.

I hope you help and sooner rather than later. Please keep us in the loop.

[LillysMommy223]

Thanks everyone for the quick responses!

I currently live in Napa which has an average of 80 to 85 degrees, so definitely not hot. I take very good care of myself, always have. I drink nothing but water and take daily vitamins have been for over a year. I have been looking online for nutrition ways to take better care of myself and I honestly already do the majority of them.

My neurologist has ordered a spinal tap, and we have done all the blood test she could think of to rule out other causes. She just ordered a test for lupus and that still hasn't come back but she told me she's pretty sure I have MS and sometimes at my age it can take awhile to show lesions on my MRI. But the spinal tap she said will tell us more.

Yesterday for the first time I fell down unexpectedly and I have noticed my balance and coordination has been off, that was my first actual fall though.

I have been hesitant to take any medications without knowing for sure. Which ones have helped you guys? She offered a few and I would like some feedback.

Thanks everyone!

[LillysMommy223]

Nerve study was also done...

I forgot to post as well last week they did a nerve study test to check if it was coming from my peripheral nerves and the results showed it was not. She believes it's coming from my brainstorm based on the symptoms over the year, and that my eyes don't line up when being tracked.

Has anyone else been diagnosed after showing a clear MRI the first time around? My neurologist said it is typically more common in younger people. Do you think I would benefit from getting a second opinion or do you think she is doing everything she can? Thank you for all opinions advice and encouragement. It gives me hope just knowing I'm not alone in these things!

[Marco]

I have been hesitant to take any medications without knowing for sure. Which ones have helped you guys? She offered a few and I would like some feedback.

I would suggest only starting one medication at a time so you know how it is impacting your body. I would pick the problem you perceive as the most difficult. Pain and spasticity can lower your quality of life so they are often a good starting point. It may also take some time to get the dosage correct.

• Lyrica and Neurontin help with nerve pain.
• Baclofen or Tizanadine for help with spasticity.

These medications are not exclusive to MS patients, but treat symptoms. It may be years before a conclusive diagnosis is made so try to get relief when and where you can. I understand your hesitancy to start medications, but there is no point for you to be in non-stop pain. Been there, done that.

[Kelley1]

Definitely Hang in there!

The doctor seems to be doing everything, but a second opinion doesn't hurt. YOU pick the doctor for the second opinion though. The spinal tap was the ultimate test for me. It could be so many things at this point - epston bar, neuropathy, all kinds of diseases that they do have meds for. You are not alone in this kind of limbo, but hang in there until the diagnosis is made. The not knowing is the hardest part as you can deal with the problem. They say that God will only give you what you can handle - I think you need to be strong at this point. It will get better. Kelley1