MRI came back clear what now so frustrated!

[4kidsmum]

I finally got the results of my MRI and the report says everything is clear which I know is good but I Know something is wrong. I was given the MRI because after about a hundred question about my health history and other problems problems my doctor was concerned about MS. She told me I was basically as textbook for symptoms as you can
get.

She is Sending me to a MS specialist Wednesday but after ten years of doctors telling me I'm just depressed I'm worried the same thing will happen with this new Dr.

My husband has been wanting me to see a neurologist for years because he can see me stumbling, falling, dropping things for no reason, he can feel how rock hard my back and legs get when they spasm. The only thing I can equate the pain to is labor contractions that last for days with no let up.

I'm not depressed I'm frustrated. It's my body and I know it doesn't work the way a healthy 39 year old body should. The fatigue it's so bad all I can manage is getting dressed to pick up my kids from school.

Has anyone else had this problem? I feel like I'm losing my mind.

Also to clarify, the MRI was of my optic nerve and brain after going to an ophthalmologist after a three day period of double vision.

Can you have MS without brain lesions?

[SNOOPY]

Can you have MS without brain lesions?

Yes. Approximately 5% of those diagnosed with MS initially have clear MRIs. There is other testing that, if positive, can help support a diagnosis of MS.

You might ask you Neurologist for a MRI of the cervical spinal cord as lesions can show up there even if the brain MRI is clear.

Unfortunately, symptoms alone will not give you a diagnosis. There are numerous other conditions/diseases which have symptoms similar to MS. Many of these conditions can overlap one another in the symptom category.

Myasthenia Gravis can cause double vision and something that your Dr. might want to check:
http://www.ninds.nih.gov/disorders/m...nia_gravis.htm

[lynng1776]

Can you have ms clear mri

yes, you can have ms with negative test results.

[4kidsmum]

Thank you

Thank you for your help and answers. I have such jumbled feelings right now. I know I should be happy my brain and eyes are good and I am, honestly. I'm just so worried that I will be brushed off as a hypochondriac that I've been in tears all day.

Even my young kids 8 and 9 know something isn't right with mom. I pray that this specialist digs deeper and really listens to me. I'm bringing my husband as a backup witness so to speak. That way I hope she sees these symptoms are severely impacting my daily life. My husband is having to do all the shopping because I get confused and over stimulated in the store these days, he runs the kids around, takes care of me when my back and legs are so tight I can't walk. This is such a burden to him when I have maybe one good week out of the month.

I'm hoping the Dr will see this isn't just anxiety or depression. Thank you so much you have given me some hope that I can get some kind of diagnosis and the correct treatment for it.

[lynng1776]

I do. I was given a clinical diagnosis in 1991. I have almost all the symptoms.

[MyGirlsMom]

4kidsmum

Hi! Yes, many of us understand your feelings of frustration as we have been there too. I changed primary care docs and didn't want to go see the new one because I was sure she was going to think I was crazy too. However, she was all over it and I was finally quickly diagnosed.

I think a c-spine MRI would be good as there can be lesions on the spine. I also think taking your hubby to the neuro appointment is an excellent idea. Early on after diagnosis, it seemed like my husband and I "heard" different things in the visit. If he can carve out the time, it will be well worth it, IMHO.

Hang in there. You will get to the bottom of this with patience and solid detailed record keeping. I ended up with a looseleaf binder to keep all my symptoms notes (with dates and degrees of severity) and test results. Be sure to keep a copy of your MRI, both digital and the written report. (I wrote on the DVD the date and body part scanned).

Best wishes and keep us posted!! MGM

[MarkLavelle]

I'm bringing my husband as a backup witness so to speak.

I would encourage your husband to go beyond that and be your advocate. Through two bouts of cancer in the 90s and my MS dx a few years ago, my wife has come to 90% of my appointments and taken notes and asked the questions that I was too dazed to think of.

I was lucky that she had experience as a reporter, but the most important thing was that she wasn't the one in peril and therefore had at least a little more distance and could think more clearly.

It's a partnership -- use it!

[football-mom]

Yes. I was diagnosed with nonspecific pinpricks in the brain, but then they found giant lesions in my neck.

[aspen]

4kidsmom

Initially I was told my mris were normal and that my lesions were tiny. I have no spinal lesions visible.

My neuro apparently is following ONE of my lesions -- a resident gave me this info when I was having an EMG test done.

Meanwhile, I'm in a similar situation as you. It is frustrating. Know that you are not crazy (although the stress can absolutely make symptoms worse!!).

I have one recommendation -- get a psych referral. With a psych note in your file, no doctor can dump it all bavk on depression or anxiety. My note says, "experiencing situational anxiety appropriate to ongoing undiagnosed neuromuscular symptoms" or close to that. Memory fail :P.

Sorry you're experiencing this; you are definitely not alone 🌹.

[lstrl]

It took me two years to get a diagnosis because I didn't have any brain lesions until then. In the meantime, my c-spine got covered in lesions. I found that it was very hard for anyone to take me seriously until those brain lesions finally showed up, even though I don't think the brain lesions were even symptomatic. Hopefully you'll get some answers soon. It is so frustrating trying to get a diagnosis for all those crazy symptoms.

[Jennagain]

I can Relate

I know how frustrating this ordeal can be. I went through something very similar 8 years ago when I had an attack. Lesions showed on the first MRI and my neuro exam showed all kinds of problems. Doctor said it was likely MS and she monitored me for a year. Lesions disappeared completely, no new ones returned and I made an almost full recovery. At this point doctor said she was no longer sure it was MS and sent me on my way.

Like you I was angry and frustrated that I did not have the answers and for the longest time I wondered what the heck had happened to me. Eventually I forgot about it and lived my life to the fullest - went back to school, met a wonderful man and got married, moved, raised my kids.

Eight years passed and I was sure the doctor was right because I never had another issue until....wham! I never would have guessed but another attack hit me last month after eight years. I was completely shocked because I figured I was home free. Now my doctor is thinking this is a second attack and is really looking like MS. Very little else it could be as everything else has been ruled out and besides what disease can present with relapsing and remitting neuro signs and symptoms in 8 years. Now just waiting for MRI.

I think this just shows you that if you do have MS it will definitely present itself eventually. It may take a long time, but as you get older, it will make itself known one way or another.

[4kidsmum]

I am so sorry to see so many of you have had similar experiences, but it does let me know I'm not alone in this. I am keeping a symptom journal and yes my husband will definitely advocate for me. I feel like our lives are on hold not knowing when or if I'm going to feel better or make it through a day without having to rest. My husbands wants his wife back my kids want their mom back and I definitely want me back. I'm trying to take it day by day but patience isn't really one of my gifts. I'll let y'all know how the neuro appt goes tomorrow. Thanks again for the support!

[aspen]

4kidsmum ...

How did your appointment go?