Hi everyone,
I’ve lurked on these forums for the last few months, but today I decided to reach out for the first time. I have a lot on my chest, so I apologize for the novel this is going to become. I just don’t know how else to explain everything. I’m also in a bad headspace, and this is going to get dark. I’m sorry for this.
On 11/3/23, I noticed that part of the left side of my face felt off. Not truly numb, but not 100% sensation-wise. I also felt the feeling of a bug crawling through my hair. These sensations only lasted for a few minutes before disappearing, and I shrugged it off thinking I had gotten a bug in my hair from watering the plants at my work. I wish it had ended there, but it didn’t. Instead, the feeling in my face became more persistent, but would still come and go multiple times throughout the day. I made an appointment to see my doctor, who told me I had an ear infection. She gave me some antibiotics and sent me home.
The ear infection healed, but the sensation in my face persisted, and started changing. Moving to different areas of the left side of my face, and varying in it’s intensity of desensitization. After a month of this, I began to get tingling sensations in my fingers, which evolved into tingling of my hands and feet (mainly my left side). I got a brain MRI done in December with and without contrast, and it came back normal (which I am grateful for).
Regardless, the sensations wouldn’t cease. I was taking folic acid for a slight deficiency my GP found in my bloodwork, but nothing was improving. Rather, I began getting worse still. The tingling was more frequent and intense throughout my body, and I was now feeling the strange desensitized sensation on my fingers, feet and left calf/knee in addition to my face. I was referred to an NP at our local hospital’s neurology department in February of this year, and while she didn’t think much of my symptoms, I told her that I was concerned about the possibility of having MS. Along with all of my strange sensational issues (which now included random bouts of nerve pain throughout my body) I had also developed a strange feeling in my left calf. It felt like the feeling you get right before you have a cramp, but the muscle wouldn’t relax. She scheduled me for another brain MRI with/without contrast, and a spinal tap. I had those tests done in early March, and was beginning to feel very silly for all the trouble I was causing since everyone told me that they didn’t think I had MS. I started hoping that I could see normal results and tell myself it was nothing but a few pinched nerves.
The MRI once again came back normal. The spinal tap however was a different story. 11 oligoclonal bands were found in my spinal fluid, with no bands in my serum. I was told this was a positive result, and that it was “possibly indicative of MS”. I started panicking. I had done a lot of research online, and had learned about some of the different types of MS. RRMS was the most common, and most people with it seemed to have an okayish outlook. PPMS however, felt like an entirely new level of suckery that I wouldn’t wish on anybody (there are a lot of scary statistics on the internet, and I can’t forget the stories I read of people whose spouses/partners left them, the physical and emotional pain they go through daily, the mental anguish it causes some people, the constant battle to remain resilient and find joy, etc).
I kept waiting for a big relapse, or for my previous symptoms to improve or go away. But nothing happened. I just continued to battle a barrage of strange neurological symptoms coming and going throughout the day (except my leg, which was becoming weaker and starting to affect how long I could walk/stand for). I’d had a cervical and lumbar MRI with and without contrast in March, which came back normal. I knew that I didn’t fit the current McDonald criteria, so when I was referred to my first neurologist, I figured he would help me create a game plan to narrow down the list of potential causes behind my abnormal csf results.
Instead, he told me in the hallway of his office that I most likely have MS. My heart shattered, and I felt like I’d stepped into the twilight zone. I think I disassociated for the rest of the appointment, because I still don’t remember much of it at all. I walked in ready to get a diagnostic game plan in place, and I left crying my eyes out with a booklet about Kesimpta and the phrase “Only time will tell if it’s RRMS or PPMS”.
An hour after this appointment, I went on vacation (I know it’s weird timing, but the soonest neuro appointment I could get was on the day of a trip I had already planned). I spent the 11 hour drive to my aunt’s wondering how the heck I was going to be okay or have fun. I reached out to the MS forum on Reddit and explained the results of my appointment. I hoped I could find some support or advice, but what I received were comments from people confused about why he had diagnosed me with probable MS and started me on a DMT without evidence of lesions. I had no other information to give them, so instead I made the best of the trip, and decided to get a second opinion from another neuro due to my aunt’s urging.
This time around, I chose to see a neurologist at a university in Indianapolis, and was told by his staff that he was an MS specialist. I didn’t have much hope due to my last encounter with my local neuro, but figured I’d give it a try. My fiance and I saw my new neuro in June, and he seemed bewildered that the previous neuro hadn’t done any protein analysis or cell count in regards to my spinal tap. He told me that it didn’t seem like I had MS, and my current symptoms didn’t seem to point toward anything concrete in particular. That being said, he wanted to do more investigation to see if there were any other causes for my abnormal csf results.
He scheduled me for a thoracic MRI and a different brain MRI to better visualize my facial nerves. Both were with and without contrast. I had both of these done a week ago, and both came back normal. He’s also wanting to test for a variety of other things, such as HIV, lyme, encephalitis, ANA and several others I can’t remember off the top of my head. At this point, I’m no longer sure who to believe. My local neuro has 30+ years of experience, and when I probed him for further information on why he was so confident in his diagnosis, he basically told me it was based on my csf results. My new neuro is under 40, so I’m not sure how experienced he is, but he seems to be more interested in trying to rule out everything else before suggesting MS.
While some of my symptoms have come and gone, others still come and go throughout the day. I still have my strange facial sensations, and the feeling in my calf is pretty constant (although over the last week my left knee is now feeling strange instead of my calf). I take amitriptyline now, which stopped the tingling/numbness of my extremities for two months, but it’s recently started creeping back again in the evenings. I also have nerve pain less often, but that’s been replaced with bowel issues (like having watery stools for 1.5 months straight) and random muscle twitches/spasms throughout my body, and the right side of my face. I’m also experiencing more pain in my legs, like deep aching and almost cramp-like feelings. My left achilles tendon also has a lump on it now, and it’s painful to walk on after a certain point. I don’t mean to complain, I’m just trying to include any potentially connected symptoms. I had none of these issues 8 months ago.
I can’t help but be afraid. I turned 26 recently, and I haven’t thought about the future for months. I can’t look ahead. My mind leads me to the same scenario every time, and it involves me slowly losing everything that I love about myself, everything I love to do and watching everyone I love live their lives while I stay rooted here in this mess of a body. I’ve fought through so much pain, abuse, abandonment, neglect and trauma from so many people in my family and life. The only things that kept me from ending it all were the hopes that when I grew up, I would be able to create a life that I loved, and find or make my own family who could love me the way I always dreamed of being loved. Even if I couldn’t do those things, I took comfort in the fact that I would at least always know how to take care of myself even if I had no one else to lean on.
This hellish limbo has taken these hopes away, and I don’t know how to get them back. I don’t know how to cope with this, and my therapists can only help so much. Every day I worry about the future and my place in it. Some days I’m able to live in the moment, but it only takes one small reminder and I’m right back in the pit. I thought things would get easier once I could make a life for myself. I was wrong. Excuse my language, but fuck the universe.
I’m sorry, I know I’m throwing a pity party. I know many people have it worse than I do. I try to remember this every day, but sometimes the fear and despair and loneliness of this whole thing becomes too much to bear. I’m too afraid to hope that I’ll be able to live a long and happy life. The only thing I know is that every time I’ve tried to hope for the best, the worst comes to pass. Why would this time be any different?
My spirit is broken, and I just want to be okay again.
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