Neuro suspects MS. If so, is there anything that can really be done to help me?
I'm 23 years old and have been progressively developing weird neurological issues since the age of 14. At first, speaking became difficult. I could still do it, but I stuttered a good bit at times, had trouble enunciating certain words (especially words with an s sound), and people were often asking me to repeat myself. No one seemed to really notice I was struggling to speak but me, though. At least they never said anything. I guess they just thought they had trouble making out what I was saying sometimes because I had always been kind of quiet; I don't know. Then one day, my sense of taste just quit working. I was sitting at lunch in the 9th grade and noticed the food tasted like nothing to me. I thought maybe the food was just really bland that day, so I went home and shoved a bunch of hot candies in my mouth, and I couldn't taste them at all. I told my parents I was scared I had tongue cancer, and they laughed at me and asked where I came up with this stuff. This went on for several years. Eventually, my sense of taste started to return, although I don't think it's normal yet. I eventually, I guess, relearned how to enunciate, but I still have issues pronouncing words sometimes, especially when my tongue gets numb, which is another complication I developed several years later.
When I was about 17, I started experiencing random dizzy spells and also began having extreme eye pain when walking outside in the mornings, I guess because my eyes couldn't handle the abrupt change in lighting from indoors to outdoors. I also developed this nagging pressure/pain in my right knee that never went away. I went to a doctor for it, who told me it was just something that teen girls get sometimes. Eventually, that pressure let up, but it comes back sometimes..like right now I have it.
Then once I started college, I began having issues with balance, 24/7 headaches on the right side of my head, and cognitive problems. I used to be so freaking mentally sharp, and now I can barely follow the plot of a movie or book because I forget which character is which and what happened in previous scenes. I used to be a really good writer, and now I struggle to just come up with the words to communicate my thoughts all of the time. I catch myself writing the wrong word a lot, too, like there were times where I meant to say something like "clinic" in a school paper, and I wrote "minute" instead. Weird stuff like that, and SUPER frustrating as an English major. I also began peeing very often and began having difficulty "holding it" long enough to get to a bathroom. I get bad pressure in the center of my chest, too, as well as ringing in my right ear. Randomly, I will experience numbness as well. Most of the time, when I get numbness, it's more of a decreased sensation in my skin in general, but there have also been times when a random body part like my thigh or my tongue went completely numb for a while.
There are other issues as well, but you get the idea. I'm freaking broken.
I've been to a gazillion doctors, so far to no avail. My GP said it was anxiety and gave me Xanax. My first neurologist said he detected cerebral atrophy on my CT scan (without contrast), but he just shrugged it off as insignificant and told me to come back to him in 5 months if I still felt I had a problem. My cardiologist did an echo and stress test, said they looked fine even though my heart rate shot up to 200 bpm pretty much instantaneously on the stress test, and he didn't feel he had to run anymore tests given my age. My acupuncturist said it sounded like chronic Lyme disease, but I quit going to see him because, after 3 months, I didn't feel as though I was seeing any benefits from his herbal remedies or acupuncture treatments. My second neuro just recently ordered an MRI, and now I'm waiting on the results of that. He wouldn't test me for Lyme because he said only people in New Hampshire get it, so I went to this complete jerk of a doctor with a walk-in clinic to get tested for it, and now I'm waiting on the results of that test as well. I recently consulted the opinion of a chiropractor as well. He found some curvature issues in my spine as well as a twisted bone in my hip and a bone that doesn't move properly in my neck, but I doubt correcting those things will cure all of my problems. He said he could test me for adrenal fatigue as well; we're holding off on doing any of his treatments until the results of my MRI are in, though.
So anyway, when I went to have my MRI done a couple of days ago, I freaked out when the lady pushed me into the machine and told her to take me out NOW. She phoned my neuro and asked if a CT scan with contrast would be sufficient, and he said no because he can't detect MS on a CT scan. So I guess he suspects I have MS; he never told me that, although it's definitely something I've considered in the past.
Anyway, if I do wind up having it, is there any hope that I'll be able to get some relief from at least some of these horrible cognitive issues, or am I doomed to spend the rest of my life afraid to leave my house or interact with others because I feel like they all think I'm slow and stupid?
If you do have MS, you will have many possible courses of treatment at your disposal. Some are designed to relieve the symptoms you describe, and others (disease-modifying drugs) will help keep you from getting worse. You are not doomed by any means.
Only people in New Hampshire get lyme disease? I'm sure the guy doesn't seriously believe that, but he or any doctor should still take your concerns seriously and give you a real reason why he doesn't think you have lyme.
Your symptom history could indicate MS, but the disease has many mimics. I hope you get answers and start fighting the MS, or whatever condition it my be, very soon.
Oh, he believed it. It was really difficult not to laugh in his face when he told me that was the reason he doesn't believe I have it. Lyme is a pretty controversial and misunderstood diagnosis, anyway, though, so I doubt I would have gotten very far with him even if he didn't have that ridiculous belief. Most doctors don't believe there's such a thing as chronic Lyme disease, only acute Lyme, so it'd be hard to get a doctor to consider it as a possible diagnosis for a condition I've had for 9 years. I mean, I'm even a little skeptical of it just because of how many people there are out there claiming there's no such thing as chronic Lyme. It's just really difficult to know what to believe!
Thank you for your response. I'm glad there are treatments that can help with MS; I've read in the past that there's not much that can be done about it.
It could be that the ordering physician only wanted to order one test and chose the one with the best possibility of revealing evidence of disease activity from a variety of causes. I believe that would be the MRI.
I'm not sure it’s a good idea to assume the tech relayed correct information OR that your own interpretation as a third party was correct. Whatever the case, as nice as it was for this tech to inquire about an alternative test, she was out of line to mention any specifics of her conversation with your doctor.
I'm not sure your symptom history looks much like MS but neurologic problems are often hard to diagnosis with certainty. The more generalized and wide spread symptoms are the harder diagnosis gets. Doctors will look at a broad range of possibilities and then start to eliminate. As you’re waiting for results, I assume something happened that allowed you to eventually complete the ordered exam.
There are ways to manage MS when it is diagnosed. There is nothing that makes it 'better'. I hope you don't have it. I hope even more that you can stop worrying about it unless a qualified physician tells you to. Nothing makes physical symptoms worse than worry and stress - no matter what there root cause is.
I'd advise you to get out and enjoy life and interact with people to the best of your own ability WHENEVER YOU WANT. Excuse my frankness, but spending "the rest of [your] life afraid to leave [your] house or interact with others because [you] feel like they all think [you're] slow and stupid" is the biggest hurdle you could find satisfaction in learning to clear. We all struggle to some degree with fitting ourselves into social norms but in the end.... please…..
Live your life for YOU. Not others.
Sounds like you've visited some real winners for doctors (not!). Hopefully the one you got to test you for Lymes sent the sample to Igenex in Palo Alto, CA. They're the most comprehensive, accurate testing site for Lymes.
You could have written my story, too, as I had all kinds of weird neurological events in my teens and twenties. I, too, suspected MS, but I didn't talk to my doctors about it because I thought "nobody's gonna believe this!". I finally couldn't ignore stuff any more in my late 40s,and was eventually diagnosed with MS at age 50. In any event, diagnosed, or not, I suggest you get out there and grab life by both horns and totally enjoy yourself. I've done some amazing things in my life before and after my diagnosis, and I expect to continue experiencing amazing times.
MS or no, Lymes or no, you owe it to yourself to live the best life you can.
I don't expect you guys or anyone else to understand why I can't just "grab life by the horns and totally enjoy myself" right now. There are too many impediments, but judge me however you wish. Everyone else does.
Also, I'm glad the tech mentioned specifics of her convo with my doctor. I like to be in the know about what's being said about my condition.
I'm not "worrying" about having MS either. I'm worrying about having a brain tumor or a bulging aneurysm or something along those lines, but I'm not worrying about having MS. I hope I do have it. At least I'll have an answer then.
Yes, I had the MRI done. And the Lyme testing was done through IGeneX; I ordered a collection kit myself, which all the docs I asked to do the test for me thought was crazy, but yeah. Of course, I'm now reading an awful lot about people being wrongly diagnosed as positive through IGeneX, so who knows.
We may not understand your situation fully but we certainly can relate. I don't know TLC very well but Guitar_grrrl just told you she had a years long struggle before diagnosis and PastorDan has shared openly about his frustrations struggling to function without a diagnosis.
I wasn't diagnosed myself (with MS) until twenty years after the first work-up for neurological symptoms. Other autoimmune diagnoses have followed. Each diagnosis gave me the relief of 'knowing' for a day (or less). Then came the realization that my struggle to function well was going to keep on keeping on. I lost most of my hope for a while. Then I decided not to hand over more to any disease than it was determined to steal away from me.
To clarify something I said earlier......
ONE reason the tech was out of line is because it is so difficult to condense the meaning of an entire conversation to a single statement (and that assumes your doctor really shared much about what he is thinking). The longer conversation of this thread demonstrates just how difficult communication really is. So, yes we all ask the tech and like to 'be in the know'. It's just hard to be sure which information is accurate. Your best bet is to request copies of physician reports and test results and a copy of your MRI on CD.
Your question asked if you were doomed to a lifetime of specific limitations if you were diagnosed with MS. I believe we responded to your question with honest opinions and suggestions. That’s the best we hope to offer one another here. You are free to disregard anything that doesn’t feel like a fit for your situation. It’s customary in this community to do that without dismissing the PEOPLE behind the opinions. It never feels good to get a hand slapping after voluntarily responding to a call for help.
We may not have responded in the way you wanted but I don't see that anyone here judged you. I continue to wish you well in your search for health and happiness.
I recall the fear when I had my first Brain MRI for an eye problem, then a few MRI'S later and the Dr wrote probable MS, I was seen by MS Specialist, he gave me the DX of Radiologically Isolated Syndrome (RIS).
I've gone from two brain lesions ( one enhanced) to six and two on the spine.
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