Recent Diagnosis with MS
Good morning-
Was just perusing many of the threads on the forums and didn’t see any specific topics that related to my diagnosis. I was officially diagnosed last week, so all of this is totally new to me. I am different in the sense that I am almost asymptomatic based on what I have been reading of other people’s experience with the disease. So I was looking for anyone else out there that was in a similar situation to mine.
It all started back in March, had numbness in my ring and pinky finger that travelled into the palm of my hand. A week or so later, my forearm also became numb. This was followed by mild burning and tingling in the same area. Few weeks later burning and tingling stopped and I was left with numbness in fingers, hand, and forearm.
Assuming it was a compressed nerve, I had an EMG and NCT study. They found I had ulnar nerve compression in my elbow, Cubital Tunnel. I then had a ulnar nerve release surgery in my elbow. After recovery, my forearm regained feeling and is no longer numb, but my hand and fingers were still numb.
Further exploration was required, so I had a c-spine MRI. MRI returned with a lesion on my c-spine as noted by the radiologist. Orthopedic surgeon advised me to seek further diagnosis from neurologist. Went and had a non-contrast/contrast MRI of brain, c-spine, t-spine, and l-spine. Numerous lesions noted on brain and lesions on spine were confirmed. The lovely LP was next, results returned with o-bands and high RBC and WBC counts in CSF. Shortly thereafter I was diagnosed with MS. Neurologist rx’d Tecfidera for my DMT.
I am currently awaiting results of MRI on hand/arm as well as U/S guided injection on my ulnar nerve in my hand to confirm or negate Guyon’s Canal syndrome. If it is negative, I will assume that the numbness in my hand is due to the transverse myelitis caused by the MS.
Other than the numbness in my hand/arm, I am asymptomatic for the other symptoms of MS. Because I have such limited symptoms, I was looking for someone who had the same experience/situation that I am in with such limited symptoms. I actually feel horrible writing this after I have read what many people are experiencing with MS, I feel like my situation is very trivial in the grand scheme of things and that I should be happy that my symptoms are so minimal.
I was just looking for someone who is/was in my situation where diagnosis was almost accidental and symptoms were very minimal. I honestly do not know what I expect from this post, I know there is no “common disease progression” that anyone can give me. Regardless, I am just looking for any insight of advise as I am just starting to process my diagnosis.
Appreciate any information!
not sure if it is the same thing, but i was first dx'd with benign ms.. after going to a different neuro he said there was no such thing.. but my symptons have been, thank the Lord, mild. no progression on any new mris.only one flair i guess.. wound up in the er .. given steriods and morphine to stop my nerve pain. nothing really since. if this is similar to yours, you're not alone.. but every one is different with this stuff. so dont give up
Thank you for responding, it is just tough when I read 95% of the posts on here and so many people have serious and debilitating issues! It almost makes me not want to post, but I realize that we are all in this together, big and small. So thank you for your story, it does help me finding people who are in a similar situation to mine and knowing that I am not alone with my more “mild” symptomology.
Almost the same thing happened to me when I was diagnosed. I woke one night feeling like my hand was asleep but I could not get it to wake up. This happened over and over. It was a sensation of numbness, itchy, burny, achy. I thought it was probably carpel tunnel. I finally went to Ortho. He put a shot in my wrist and it did not help. He wanted to do a MRI then but I put is off for about a year. I finally got the MRI and Ortho referred me to Neuro but did not tell me why. They did the gamut of tests and blood test and more MRI's and spinal tap. Several months later I was diagnosed. That was in 2011. I have some balance problems and problems with toe drop but for the most part I have not had any more issues. I feel very blessed like you that I do not have some of the issues that others have.
Thank you for responding. That is pretty much exactly how my symptoms started, but mine was quite sudden and I had the same thing, numbness and tingling that turned into burning in pinky, ring finger, outer part of hand, and my forearm. I had a NCT and EMG and they thought it was a cubital tunnel issue, surgery took away all the numbness in my forearm, but hand remained numb. So further exploration revealed a lovely lesion on my spine, more MRI’s, and the always fun and exciting LP (that was administered by a 14 month resident, which made it even more exciting) I am a fairly optimistic individual and I did my research so I know it is not necessarily the end of the world. I am just thankful that they happened upon this and it helped explain why my hand is still numb before I went under the knife further and I was able to get on the DMT’s. Thank you for reaching out!
I had one episode of numbness in right arm and hand and leg in 2001. I was 43. I had a friend who was neurologist who ordered my MRI and also did a spinal tap for confirmation. Was treated with steroids at that time. Those symptoms went away and I have never had more symptoms. I have been on several different meds over the years. I get an MRI about every 3 years and even though there has been an increase in lesions over the years, they have not caused me problems. The biggest problem I have now as I get older is that whatever happens to me, every doctor wants to blame on MS and won’t treat me appropriately until I PROVE it isn’t MS. So my biggest advice to you is not to let them blame everything that happens to you on MS! I wish you the best in your journey and pray that the MS is as kind to you as it has been to me!!
Don’t feel bad about annual MRI. I had to have those frequently at first so they could assess effectiveness of DMD. I am unaware of your financial situation, but if you contact MS association America , they will help pay your copay for one MRI of your brain every other year. Even with minimal long term effects on your body, the monster can rob you financially. It did me, and I made a decent living. Also. You can take charge of your own care. Keep up to date on current therapies and if you see one that you want to try, tell your neurologist. After a few years, I just started telling the neurologist that I didn’t feel the need to have MRI so often and I really didn’t want to see more lesions if they weren’t adversely affecting my life.
Thank you for this great advice. I was experiencing the same thing- of now everything being lumped in with "MS"- rather than making sure it isn't something else.
I think it sounds like you have experienced a fair amount of symptoms! It’s great news that it has been spotted this soon and good luck with the DMTs.
I get what you are saying in some ways - I was diagnosed in 2006 with a rather severe first relapse at 21 years old yet since have had almost nothing. Cognitive issues which are manageable, and one episode of ‘optic neuritis’ (it wasn’t technically optic neuritis as the optic nerve had no damage - seemed to be/assumed a lesion impacting on visual field or something I didn’t understand that the neurologist told me! Lol)
I sometimes feel a little bit ‘imposter’ in comparison to others with severe symptoms and regular relapses, despite being incredibly lucky and grateful, I sometimes/often/usually avoid even mentioning my MS, which actually doesn’t help me as despite the above, my lesions have progressed and sprouted over the years, just seem to be very small and luckily not impacting on any physical areas!
Hope this makes sense and isn’t waffley. Sorry to hear about your diagnosis but, there is a very good chance you might be able to live without it affecting you too much.
Thank you for replying Gemma, I appreciate your insight! I feel like an “imposter” as well, I know a couple people who have MS and I don’t even feel comfortable telling them about it because their symptoms are soooo much worse than mine! But it is good to finally hear from some folks who are in “relatively” the same boat as me and have a forum to openly discuss it without feeling guilty! Thank you for sharing!
