Still chasing a diagnosis

By Betts

2 min read

Hi to all,

I am about 16 years into living with undiagnosed MS…I think. And my PCP thinks. Other Drs think so when they look at my medical history and stats. But my MRI showed “non specific white matter areas” so no one will give the diagnosis. Spinal tap was negative. Blood work is all over the place but chronic low vitamin D, high inflammation markers, some other abnormal stats off and on.

Fortunately my PCP will treat symptoms and help me all she can. She’s as frustrated as I am.

Here's the thing

But here’s the thing-now I’m 64 years old. I was in my late 40s when it started. They call it Fibromyalgia but my neuro disagreed. He thought MS but back then I didn’t fit the criteria for diagnosis. Then he moved away and my PCP has sent me to a Rheumatologist looking for Lupus, Lyme or any number of things, only to be shot down time and again.

Experiencing a bad flare

I’m having a bad flare now, complete with walking difficulty, balance is terrible, numbness on one side of face, fatigue, blurry vision and dry eye, ankles swelling, bad chronic pain in legs and forearms, Raynauds syndrome in hands and feet, heat intolerance, heart palpitations and fuzzy thinking. I work for myself but having difficulty keeping up with my business.

Not sure where to go from here

Do I chase another round of testing and referrals to specialists? I’m still paying off the bills from all the previous labs and imaging tests that my crappy insurance put towards the deductibles.
I’m not paying for more inconclusive expensive tests. And if they do finally give me the diagnosis, should I start taking heavy duty drugs when I’ve made it this long without them? A bit more help with pain and walking would be nice. Gabapentin, Cymbalta and NSAIDs are all out due to reactions. Marijuana makes me sleepy and dizzy. Supervised narcotic pain meds worked great before we all got labeled as drug addicts. So what’s the point of chasing the diagnosis now?

Thanks if you read all this. MS groups are the ones I trust and with whom I identify.

Betts

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DonnaFA Member
 Unfortunately, <inline-mention username="Betts" user-id="4166638"/>, the only way to test for MS is a diagnosis of elimination. There is some promising research being done in Australia that would test directly for MS, and can actually show if a treatment protocol is efficacious! But it will likely take a bit before it makes it to this side of the world. I hope that you get some great feedback from the community. We are honored by your trust. -Warmly, Donna (team member)
justyravgjoe Member
Thank you for posting Betts. When I started reading your post, I thought I wrote it. I am in a similar situation and just as frustrated ! Symptomatic for 17 years, and now at almost 55 years old, they just keep getting worse. Even had an expensive surgery that provided NO relief. Will be going to another neurologist next week ( think this is number 8 ). I can barely work at this point, and taking prescribed meds for pain almost daily, which sometimes don't work so well. Hoping for you , me and everyone else out there that is struggling that there can be more of a definitive diagnosis, so an effective treatment can be administered.
f5hwo4 Member
My story is the same I started having symptoms at 21, I couldn't get a referral to a neurologist until I was 55 from my GP. I even had MS hug for 3 months and my GP told me I was drinking to much caffeine. He finally referred me to a neuro for my elbow, he thought I had a pinched nerve. The neuro tested me for MS and pinched nerve, no pinched nerves yes to the the MS. I changed GP's. Potter
sheila0313 Member
I feel like one of the comments above. I could have written this story also. I am now 66 and started this MS journey around 45. Went through all the testing you described and my LP tested negative. I went through the testing with at least 3 neuros and finally said enough is enough. They all wanted to base their final diagnosis on the LP and it just wasn't going to happen. Luckily I have an awesome PCP that helps me with so much like meds for muscle spasms and she believes that I do have MS, but a mild case. At my age I am not going to take the infureons (sp?). I am just going to identify my triggers (heat, exhaustion, stress) manage that to the best of my ability and manage the symptoms as much as I can, but I won't continue to chase an official diagnosis from a neuro. I know I have it; there are just too many unexplained symptoms. And I am just going to live with that and be thankful that I am not severely incapacitated as so many are. I hope this helps just to hear from someone else that you are not alone and I pray you can just learn to accept what you do have, proceed with caution and don't worry about that elusive diagnosis. Best wishes to you and may God turn his favor upon you and give you peace about all of this.
Purblue320 Member
I am in the same boat. 54 this year and can remember times where I definitely had symptoms but they were chalked up to sever anxiety. Now that I'm in Menopause, so many symptoms are appearing: pins & needle feeling in feet / hands and sometimes top of head, muddled thinking, losing words when talking, lethargy, joint pain. My Dr is trying but I'm impatient with a diagnosis when I do believe it's MS. Haven't had an MRI but am requesting one and a referral to a Neurologist who specializes in MS. Hopefully this week I can persuade her. Had a bad day yesterday where I was really off balance and of course it does spur on anxiety just not knowing what is going on. ☹
1. Lori Foster Member
 I hope you are able to get a referral, Purblue320. Don't be surprised if your doctor wants to run a few other tests first. There are several health conditions that mimic MS and should be ruled out. The neurologist will expect that your doctor has done that before referring you. Here is an article that lists them: <a href='https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions' target='_blank'>https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions</a>. I hope this helps and that you get answers and relief soon. Best wishes! - Lori (Team Member)
Frogger32091 Member
<inline-mention username="Betts" user-id="4166638"/> sadly I don't think there is a correct answer. I feel for you. It is so hard to deal with a disease that can't be properly diagnosed. You feel crazy, you feel alone, you feel unheard. I starting having my symptoms in 2017. At first I had no clue what was going on. I went to so many doctors and they all kept saying they didn't find anything. They gave up and so did I often. I would think I was going crazy because you can't have symptoms of nothing is wrong, right? Wrong!!!! Finally I got a Dr that is even willing to consider MS and is running specific test to rule out other things so she can give me a formal diagnosis. So I feel for you. My medical bills are nuts. Luckily I am still able to work for now but during flare ups it is very hard. This group had been great and went a long way in helping me feel heard. I hope they help you to.