How Did I Even Get Here and What's Next

By fingolfin

5 min read

On my 50th birthday, which was 2 years ago almost to the day. I felt like I was on top of the world! I spent it backcountry camping at Lake Powell, UT, and could not be any more happy. Career, relationships, money; I had finally come into my own and my climb to the top although difficult was filled with love, laughter, and happiness.

When it all changed

A couple of months later that all changed and is now a faded memory and long story short and what I can really only be described as hemiparesis running all the way up my left side. Very acute in nature but after a slew of tests, nothing showed up. The closest thing was EBV that showed up months later. Interesting to note that I initially thought it may be MS, but doc did an MRI of the spine and brain and everything was normal. Funny thing about that he never did a spinal tap to confirm findings; in fact, seen 1 other neuro which referred me to a neuropsychiatrist.

I never had too much of an issue with my health

My health history is easy. A few broken bones and only 2 what I would call major ailments prior to this. Bells Palsy on left side of face at 25 and Shingles left shoulder with the epicenter being in the area on my brain stem (at least not my eye or ear right? Odd right? All happening on the left side. My acute condition was rough and lasted about 6 months and then finally got IV ozone therapy and that settled things down for a bit.

Difficulty solving complex problems

Needless to say, along with my physical symptoms, I also had some cognitive issues. Considering I have been solving extremely complex IT issues for business and was (yes was) very good at it. I simply couldn't think anymore. I just couldn't do it anymore for some reason. It felt as if I couldn't think, still does...that has only gotten worse with time. No ambition anymore, no motivation anymore. For anything really...I rarely kayak anymore and I was the guy to stay out 8 plus hours in the hot AZ sun on a lake.

I'm experiencing emotional and physical changes now

I healed to a degree, but was messed up and never felt 100% after that. Fast forward...I cry for now for no reason, I have problems socializing (and that was my super power up until now). I feel like I have half a skullcap on and it's on too tight. I have pain and mainly numbness along my left side of my head and shoulder and my left side of my lower chest as if something is squeezing it, my leg is it ever stops twitching, which I fear never will...all the way down my heel. All this is sometimes more and sometimes less, but constant. Sometimes it feel like someone has split my shoulder with an axe...much like Dark Sied getting a battle ax straight into his collarbone in DCs Justice League. Yep I feel exactly how that looked, but mine is deeper; I can so personally relate to that scene. Oh yea and I have a brand new symptom as of a month ago...ice pick stabbing pain behind my left eye as if someone is back there trying to chisel their way out, but again I may as well have a half of face mask that's put on too tight. Everything on that side isn't working like it should. Its all numb...neck shoulder, front of face, top of head, parts of hip, leg, my heel (why would my heel be numb!?)

My symptoms have cost me my side business

I moved out of AZ recently because the Docs out there couldn't figure any of this out. In fact that top rated neuro from Mayo...yea, he said everything is in my head and to see a shrink. I sidelined my side business which would of made more money than ever. Have made very bad choices which I normally wouldn't do, I've been angry and sad at the same time or at different times...due to this anger its impacted relationships and I keep ppl at bay; sometimes I have issues with swallowing (yea you guess it...on my left side). Feels like I'm having an allergic reaction to something and half my throat tightens up. My left side hurts at various points and/or is numb and/or tingling; i have had a constant leg flutter for almost 2 years, mainly calf and shin. I can't solve problems anymore and that is what I do to make money!! So frustrating!! I stepped down as a director for my day job because that too was becoming too much...who does that?! 30 years grooming my career to step down, lol! I now just work again but can't solve simple problems like I use to. It takes weeks instead of hours to get something down to a point I am comfortable.

The fatigue is so real

Did I tell you I am always super tired?! 8 9 hours of sleep wake up and then take an afternoon nap 2 hours later. When I moved to AZ it took me 2.5 days; when I moved back to the east coast. It took me 5 day and I thought I had bit off way too much. The same guy who is a beast while driving and has done everything with little to no support. I still don't have a diagnoses but I think I know and if it is not this...it may be one of it's brethren. Now I am with a new Docs expecting more but not confident at all and we are still ruling things out my ice pick eye pain. They are suspecting migraines! I've never had a migraine before in my life!!! Let alone one that feels like someone is jamming a poker in my eye. Speaking of no confidence. I think I read on one of the other discussions about self esteem issues. I don't have that either.

I feel broken and loosing myself just a little more each day. I'm sacred, alone and confused amongst other things. I am operating on sheer will alone. If something happens to me, there will be no one to take care of my pup, if I don't work he can't have the best life possible. Perhaps that original doc was right, perhaps this is all in my head...I sure hope so.

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justyravgjoe Member
I feel for you, l really do. Docs can be useless, on my 10th, l think, neurologist over the past 18 years. And l believe you. I am sure your symptoms are real. And while it may not be in your head, it certainly messes with it. Self esteem, self worth, all of those things we were so proud of ourselves for, gone. I wish you the best on the east coast, that's were l am. Maybe we can commiserate together. At least it will help to vent! 
1. fingolfin Member
 <inline-mention username="justyravgjoe" user-id="4051008"/> thank you and so agree!!
kwest51 Member
I'm so sorry to hear you're experiencing this. Unfortunately, many care providers dismiss real symptoms because they cannot fully explain them. We have to be our own advocates and demand testing. Keep seeing docs until you find someone who listens to you. I spent years being told what I was experiencing was perimenopause or weight related when in fact, it was MS.
1. fingolfin Member
 <inline-mention username="kwest51" user-id="4020523"/> always. from day 1 I just wanted to know what was happening to stem any damage. it seemed the more I pushed the further it got to a point where it got away from me. I think I may have a good team now, but that will come out in time.
mowens3139 Member
 I can relate to your situation. My MS Neurologist is pretty sure that I've been dealing with MS for many years before my official diagnosis, which was in 2020. I understand the frustration with doctors. Doctors would tell me it wasn't possible to be in that much pain, that I was exaggerating, they would imply I was drug seeking. They didn't want to investigate my complaints. Some would blame it on stress, anxiety, etc. I was a police officer for years and was at that time, so they blamed it on the hours I worked, etc. It was several years later, after leaving my career as a police officer, I had even made it all the up the ladder to Chief, I abandoned my family doctor and found a new one. My symptoms were getting worse and new ones were popping up, many the same as yours. My new family doctor was the first to suspect MS, he referred me to neuro specialist after specialist, some were outright idiots in my book, others might have been okay but my insurance provider wouldn't pay for a follow up. Long story short, I finally got hooked up with the right neurologist, who ran all test imaginable and confirmed it was MS. He felt that my MS was progressing beyond what he was comfortable treating and referred me a MS Specialist, who has been a blessing. I too struggle with thinking, and solving problems like you described. Just typing this comment is taxing. Aside from being a cop, I ran an IT business on the side, mainly small networking, pc builds, virus removal etc. The combination of the two later lead me into computer forensics. What would take me a few days then, would take me weeks now. I struggle with motivation, alot! I find it almost impossible to follow through with a task or project most days. Enough doom and gloom, I'm on a new DMT and new meds to help with the long list of symptoms. I do hope that you find a doctor soon that can diagnose you properly. I would be glad to give you the name of my MS Specialist if need be. Message me if you need to vent or talk. God speed and God bless, Mike 
1. fingolfin Member
 <inline-mention username="mowens3139" user-id="4188246"/> thank you Mike and will do that for sure and appreciate your offer more than you know. As sad as it may seem I dont have many people to talk to these days and talk about whats happening to me with even less. I have made some progress with these new docs and think the overall move back east was a good one. At least im being listened to now and as someone else stated i have a multitude of symptoms which simply cant be ignored. 
2. mowens3139 Member
 <inline-mention username="fingolfin" user-id="6610705"/> You're welcome. I'm in the same boat, aside from my family, I don't really have anyone I can talk to about it. My family is great but at times it's like they really just don't get it. I have found talking to others with MS to be very helpful, even downright hilarious at times. That's awesome you have made progress with the new docs. From reading your recent post, is sounds like they have you on the right track and hopefully soon they will have you on a treatment plan. Again, reach out anytime you need to talk.
fingolfin Member
I do have a slight update. I think I finally found a good medical team. My PCP had made a referral to MS specialist without me evening knowing. It was outside of the health group I am with and thought it was strange he would do that until I saw the MS Center right next door to the neurologist office. The last episode I had landed me in the ER. I had numbness on the left side of my head with off/on eye pain, neck pain a severe burning pain along my neck going into my chest. Not much was done, but one thing I did notice is that about really the only thing that helps me are muscle relaxers which they gave me and guess what felt better almost right away. Couple of things happened. I got a immediate visit with my health groups neurologist who actually was kind of concerned with my leg fluttering more than anything so got EMGs set up for that as well as new MRIs. It appears that I have some atrophy in my left leg. I say I have some on my face I noticed 6 months ago but haven't said anything, I noticed the leg too but never really told anyone about that either, i didn't want to be told that it was natural and just imaging it. I guess second guessing myself these day is who I am. He mentioned it to me. Not to mention when this last episode finally died down but left me with some residual neck weakness into the lower jaw even. My referral neurologist appt is upcoming and going to have them investigate that which is kind of concerning I would think. 2 going to be under 2 neurologist. My visit was today but went to the wrong office, lol so we had to reschedule. But it is coming up. I know where the one doc is going with my leg...horrific is all I can think, just an absolute nightmare! which had always been on my mind, but hoping for the best. While we wait and rule things out, I started LDN (low dose naltrexone) which has helped me tremendously. I am a lot more centered, maybe getting a little dumber as each day goes by, but at least centered!! Not sure why it is not prescribed more often. I got it a while back and had really good results but stopped for another reasons but started back up again. It settles my nervous system down and actually puts me in a better mood emotionally. Since I feel so chemically sensitive these days, I'm just taking .5mg/day. On the bad side of things I have an upcoming wedding to go to and I have to take my pup so have to drive rather than just flying. I don't think I can go after committing. For the first time in my life I can honestly say, I don't have the confidence in driving, and that's my jam! Only 12hrs but cant do it. 
1. Lori Foster Member
 How awesome that your doctor took the initiative to make that referral, <inline-mention username="fingolfin" user-id="6610705"/>. I hope you finally get some answers this time around and some relief. Please continue to advocate for yourself and push for that lumbar puncture. Sometimes, lesions cause issues before they are large enough to be seen on an MRI. Other times, the MRI machines are simply poor quality. I am glad the muscle relaxant and the LDN are helping. Keep us posted if you feel comfortable doing so. Thinking of you. - Lori (Team Member)
Marbalpol10 Member
Hi I read your post and I cried. All the things you described have been happening to me. I was diagnosed 2 months ago by Mayo Clinic. It was so overwhelming and I still can not cope with it. What hurts me the most is the decreased ability to solve the problems. I am an executive for a big corporation and solving problems was so easy for me all my life. I struggle with anxiety and depression. I also have a puppy and worry about what would happen to her if something happens to me. I try to make adjustments in my everyday life but how can you efficiently do it dealing with so many symptoms ever day.? Are you already on any medication? I started Tecfidera and hoping that it will delay any relapses. It is an awful disease. Stay strong
1. Marbalpol10 Member
 <inline-mention username="Erin Rush" user-id="3987334"/> Thank you so much for the words of encouragement. It means a lot in this lonely world of MS. Life is unpredictable and I always realized that but it is hard to get used to this diagnosis thinking that only 2months ago I was a very healthy individual who was able to run 5 miles plus a day. Now I can not even walk half of that. My fatigue is killing me. I live alone and most of my friends are supportive although the do not understand how I really feel. I would love to get in touch with newly diagnosed people (on line or in person) who I can talk to and who I can help with anything I am able to. I love helping people and This is one of things that always brought joy in my life. If you have any advice how to connect with such individuals please share. Thank you so much one more time. Margaret 
2. Erin Rush Community Admin
 <inline-mention username="Marbalpol10" user-id="6125399"/> , it sounds like you are doing all you can to find ways to connect with others affected by MS. I hope your efforts pay off and you can make some great connections. There are some in-person MS support groups in many areas, but I don't know what their meetings have been like since the start of the pandemic and I know they can be a bit of a mixed bag, depending on the group. You may already be aware that the National Multiple Sclerosis Society has a number of programs to help connect people living with MS. Whether it's finding in-person meetings in your area or finding a friend through their One-on-One program, they do have quite a few offerings -- <a href='https://www.nationalmssociety.org/Resources-Support/Find-Support' target='_blank' rel='noopener noreferrer ugc'>https://www.nationalmssociety.org/Resources-Support/Find-Support</a>. The MSAA also has an online community -- <a href='https://mymsaa.org/msaa-community/my-msaa-community-forum' target='_blank' rel='noopener noreferrer ugc'>https://mymsaa.org/msaa-community/my-msaa-community-forum</a>. You may already know all of this, so apologies if this is not new information for you! And again, you are not alone in this fight! Communities like this one are here for you! Best, Erin, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
Kim Dolce Moderator & Contributor
<inline-mention username="Marbalpol10" user-id="6125399"/> please feel free to private message me here. I can chat with you about living with MS, which I've had in some version since childhood, and which became full-blown MS at age 41. I didn't get the MS diagnosis until 6 years later. I am moderately disabled, with an EDSS of 5 or 5.5. I use a cane, take several meds for MS, retired back in 2009 at age 52 and went on social security disability income (SSDI) that year. That same year, I joined an online MS support group, started writing a blog, and within 2 years, I was getting paid as an MS patient advocate/health writer. Still doing it and growing my career. It is my dream job and I have a wonderful life. I'm happier now, at 65, than I was at 47 with a new RRMS diagnosis. I hated doing office work for those 25 years prior to developing MS, it was soul-killing. Now, everything I do nourishes my soul instead. Again, feel free to private message me with questions about anything if you'd like. Cheers, Kim, moderator
Marbalpol10 Member
Hi Kim, thank you for your message. I am glad that you are happy living with this disease. It is very hard for me to accept it now. Perhaps too early still to get used to a new reality. I would be very happy if We can talk. I started using MS web to find people I can talk to, participate in group meetings ( virtual or in person) etc. Do you normally talk to people thru MS portal by sending private messages? Thanks Margaret
fingolfin Member
I havent been on for a while and wanted to update. Its getting harder for me to think still not severe but i probably should start a new thread but dont feel like getting lost in the site. Ill get frustrated and will just quit. No diagnosis yet. Was on the brink of a spinal tap but the doc never scheduled it. I forget whats its called but did have a positive foot test that something was wrong nurologically with me. The episode I had when I started this pst eventually subsided with weakness in my meck and shoulder and impacted my swallowing. So glad the one useless fuck MRId my legs and thorasic rather than my neck and shoulder. Makes perfect fuckiny sense. Useless piece a shit who make belives he is a fucking healer. Fucking pathetic. Maybe its my skin color because we all fucking know that a tan person doesnt really have the same anatomy that non tan person does. No? Maybe its my socio econmoic standard. Well shit I was making 300k a year prior to this running under my own banner and now making half that and not even leadership only because I fucking cant anymore. Yea 3 years now. Spams on my head and especially in the inner corner of my eye. Not just the eye the whole region. Leg twitching is spreading to the other leg...nothing is wrong with me. Unwarrented anxiety so bad it debiltates me...and my behaviour. Oh I am fucking unruly these days. Spending money and utterly living unil I cant anymore. I guess in this country you have to be so sick that there is no deny anything. If I suddently cant walk anymore or go vlind and go to the doc and he says yep your blind or yep you cant walk wtf good is he? Clincians are worthless individuals. Now researcher who tell these dumb clinicians everything and what to look for they arent bad and we in fact know a hell of a lot but the clinical worthless dung heaps in my opinion. I came here because my anxiety was raging again tonight. And since I am fully and totally isolated now i dont talk to many people anymore. Work people but they dont know any of this shit. Only that I forget things once in a while or repeat myself now and again...or make a dumb mistake here and there. Its a daily struggle and no i dont want to talk to anyone and really care if anyone reads this. My brain is rotting and no one seems to give a shit...so neither will I and wipl continue to live until I cant and I have an out to deal with that too once I cross that threshold.
fingolfin Member
Hahaha i can even write a complete sentence anymore. Half the stuff I wrote doesnt even make sense and im a 20 plus year professional. Hahaha love it
1. kayleighhill Community Admin
 <inline-mention username="fingolfin" user-id="6610705"/> What you wrote makes complete sense. It can be incredibly frustrating to feel like you aren't receiving the care and attention you deserve. Feeling like your healthcare team doesn't have your best interest at heart can, to me at least, at the deepest level, feel like a betrayal, and that can be incredibly isolating and upsetting, to say the very least. No one deserves to feel like they can't count on their healthcare professionals to look after them, and you deserve great care. I can feel your hurt while reading your words, and I'm so sorry that your medical team has let you down. I'm glad that you have a place to vent here, and I am glad you gave us an update. I'll be thinking of you today and sending you some good vibes in hopes that you have a good day. Warmly, Kayleigh, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> team
CommunityMember96a9f1 Member
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