Does this sound like MS or not? (LONG Story)

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

Hey folks!

I'm at my wits end trying to get a diagnosis for my bizarre, continuing symptoms. I'm a U.S. Marine veteran that gets seen at the VA which if anyone knows is not the best doctors and Healthcare, unfortunately. This process is going on a year now with still no end or official diagnosis in sight. On top of all these new symptoms, I have service connected disabilities in my cervical and thoracic spine that are degenerative and have gotten worse to the point where they, along with these new symptoms, have put me out of work for now. Its an absolute nightmare and no one is any rush to help me. I'm 38 years old. This is going to be a long story so if you're not interested, pull that seat ejection cord NOW...haha

I fully understand I don't expect anyone to diagnose me here, but I'd really appreciate if anyone has experienced similar symptoms and had similar testing results and have an idea IF it could be MS or something totally different. OR maybe even BOTH MS and some other autoimmune issue at the same time. Who knows.

I don't know what symptoms I have may or may not be connected to this issue so I'll start from the very weird beginning....

Since my early 20's, I've struggled with random bouts of severe leg muscle spasms/Charlie horses. Not all the time but intermittent. I've also always had bouts of significant body stiffness that would slow me down which became very evident (and frustrating) as a Marine. I've had higher-ups make comments asking if I was OK sometimes. I also caught viral meningitis in the Marines which was terrible.

Around age 28 my gall bladder explodes and have to get that removed. This leads to chronic reflux issues which I'm on permanent omeprazole for. I've also struggled with chronic IBS since my teens.

Fast forward to around age 31 or so, my testosterone takes a nose dive off a cliff out of nowhere. Erectile dysfunction. No energy. The whole 9. They test me, find out I have low T and put me on TRT gel which fixes me right up and I'm back to normal. No testicular cancer. Glands seem to be working fine. Been on this for years now and am probably sterile at this point because of it. Maybe just an age thing? Don't know.

Then, June of 2021, I get Covid along with the rest of my family. I probably faired the worst of all of us but I've been much sicker in my life. After Covid, I got much better and was feeling great up until December 2021. I started getting the worst stabbing ear pains. Fullness in the ears. Tinnitus. Then the vertigo set in. Vertigo bouts got to the point where I had two falls. One bad enough I injured my left arm. I never hit the deck so hard in my life. I went through repeated ER visits thinking I maybe had the world's worst ear infection....but nothing. Ears were fine.

My primary care doctor thinks I might have some sort of inner ear disorder so orders an MRI February 2022 for my ears. This is basically a brain MRI anyway. I hear nothing about my MRI for FOUR MONTHS and assume there was nothing wrong. I was extremely busy with work at this time and just didn't have the time to follow-up. The vertigo went away so I felt like maybe I was getting better.

Around end of May 2022, the stabbing ear pains returned full force. Headchaches. Slight dizziness. I'm back in the VA ER. The ER doctor there says my ears are clear BUT she noticed I had a brain MRI back in February and it had "abnormalities" and that I should discuss this with my primary care doctor. Huh?

Finally see my primary care doctor again. At this point, I'm starting to get more symptoms. Significant leg spasticity no matter what I do. Pins and needles in my hands and feet. Weird and painful "electrical popping" sensations in my fingers when I try and pick up anything heavy with my arms. Weakness in my fingers. Random sensations in my legs like there's always bugs crawling on them. Itchiness. Night leg jerking. Finger jerking. Some other symptoms I can't remember from that point. He immediately says to me "well that's because of your MS!"

I said what?? I have MS!? Then he looks at the screen and apologizes and said he was looking at another patients chart by accident that does have MS....but what are the chances of that, right? WEIRD. Interesting though that he heard my symptoms and matched it up with MS. Anyway, he says I showed 3 brain lesions on my MRI but they're "nothing" and the radiologist there "presses the panic button over everything." He doesn't believe my lesions have anything to do with my problems and they're probably just from "aging." Here are my exact MRI results:

"The brain appears morphologically normal without evidence of intracranial hemorrhage or extra-axial fluid collections. There is no evidence of diffusion restriction to suggest acute infarct.

3 foci of T2/FLAIR signal hyperintensity noted in the PERIVENTRICULAR white matter adjacent to the left lateral ventricle measuring 5 X 7mm, 6mm focus of T2 hyperintensity in the posterior left corona radiata and 6mm focus of T2 hyperintensity in the SUBCORTICAL white matter of the right parietal lobe. These are indeterminate, typically associated with chronic small vessel ischemic changes. Similar findings have been described with chronic migraine headache and demyelinating disorder such as MULTIPLE SCLEROSIS. No enhancing or diffusion restricting lesions are seen.

3 foci of T2/FLAIR signal hyperintensity in the PERIVENTRICULAR and SUBCORTICAL white matter of both cerebral hemispheres are nonspecific but most commonly associated with chronic small vessel ischemic changes, however, similar findings can be described with chronic migraine headache and in demyelinating disorder such as MULTIPLE SCLEROSIS. Correlate clinically.

Normal appearing IAC'S.

Primary Diagnostic Code: SIGNIFICANT ABNORMALITY, ATTN NEEDED."


So, begrudgingly, he decides to set me up with the VA neurologist which takes forever. Before the neurologist appointment, I have to get an EMG. Before the EMG appointment, I have this massive "event/flare-up/attack" I've never experienced in my life before. And this is when stuff starts getting real for me....

It's like a "wave" of badness that just washes over me and my entire body. I get pins and needles to the max over my entire body. I get random numbness in some limbs. I started getting bad tremors in both my hands but it started out in just my left hand at first. If I try and do anything with my hands they shake terribly the more I try to do something with them like use a fork to get food and bring it to my mouth. Or try and work on a car battery or sign my signature. I've learned this is intention tremors.

I also start experiencing resting tremors in my arms, right shoulder, and head sometimes. The cold makes the resting tremors worse and leg spasms worse. The hot makes the pins and needles worse and fatigue and tiredness through the roof. In the heat it's like barbed wire wrapped around my ankles and my legs get very hard to walk. My left is worse than my right. Tripping over stuff. On stairs, etc. A hot shower feels like raining knives on my skin and increase the pins and needles.

Then the other symptoms kicked in. I mean everything. Started having random patches of electrical "buzzing" alongside my left torso. Also on my left cheek. Comes and goes. Had two incidents where it felt like a massive giants hand came and wrapped around my left side torso on my lower rib cage and squeezed me hard. Only lasted a minute or so then gone.

After the BIG attack I started having speech problems. Real bad the day it happened and continued to be like this for weeks after. Slurring speech. Stuttering. Breaks in speech thought. Got really hung up on certain letters especially "S" where I'd drag it out real long. Shaky voice that seems to get weak. Pain and weakness in my throat. Swallowing issues.

Bouts of confusion of where I am and why. But that only happend a few times and only for a few minutes. If I ever had to imagine what a dementia moment feels like this was it. Probably my most scariest symptom. Lots of forgetfulness and zoning out. Lots of short term memory loss. Someone tells me their name and it's gone out my mind instantly. Forgetting my car keys missing highway exits I drive everyday...all that stuff

Random stabbing pains in my toes. Restless leg syndrome almost every night that makes me wake up early. Continuing leg stiffness to the point now where it affects my walking and gait. Whatever this also set off my plantar fascitis in my left foot one time I could walk on that foot at all. I actually needed a wheelchair for about a week then that went away. Weakness in the legs and arms (I've been a strong guy my whole life). Random buckling in my left knee where it just gives out when walking sometimes.

THEN experienced vision go out in my right eye WHILE DRIVING. It wasn't completely blacked out but a very large, round spot of blurriness that completely blocked my vision. It seems I could see clear around the peripheral of the blurry circle but not through it. That only happened once and then got better.

Show up to my EMG a hot mess. My physical exam was bad. I couldn't walk on my tip toes. I strangely had reduced reflex responses (which I read is usually not an MS thing?) in my left leg from the knee down. Did not have the strength to lift up left foot toes. The EMG doctor mentioned this seems like a CNS issue. The EMG itself was normal though and they ruled out ALS...thank, God.

Then I started getting numbness in my tongue and pins and needles at the tip of my tongue. Slurred speech getting slightly better now. It's pretty much gone though the speech slurring/stuttering shows it's ugly head whenever I'm in a stressful situation and my hand tremors will increase again.

Finally see VA neurologist. He wants nothing to do with anything related to MS. He sends me for a full spinal MRI. I have no spinal lesions. I do have 3 new hemangiomas on my thoracic spine. No spinal lesions so no MS...which is his position.

He dismisses my brain lesions and all my symptoms as some sort of figment of my imagination. I'm "too old for MS." All my issues are directly related to my further deterioration in my spine. Tell my primary and now because of the speech issues he's finally concerned and contacts the VA neurologist and he agrees to send me out to a civilian MS specialist "just in case" because the VA doesn't have one.

I see the "MS specialist"...which isn't an MS specialist but just another regular neurologist. They won't have an MS specialist until February next year. But this neurologist was more open to my symptoms, thankfully. He examines me. Based on my physical exam, he says "Not MS." But based on all my other symptoms and brain lesions he says "Yes, MS." But he wants more testing.

I get another brain MRI. Nothing different. Same 3 brain lesions but now they "seem stabalized."

He sends me for blood work and a lumbar puncture. This is where everything gets even more interesting. I'll just post all my abnormal results:

Blood and CSF results.....

Alpha-2 Globulin g/dL
Normal: 0.60-1.00
Mine: 1.07

Erythrocyte Sedimentation Rate (ESR) mm/hour
Normal: <15 mm/hour
Mine: 15

HCT%
Normal: 40.0-48.4
Mine: 48.7

Manual Differential CSF
Normal lymphocytes %: 40-80
Mine: 93
Normal monocytes %: 15-45
Mine: 7

Cell Count with differential, CSF = abnormal

IGG Synthesis Rate/Index CSF:
Synthesis Rate, IGG CSF
Normal: -9.9-3.3
Mine: +3.9

Albumin, CSF mg/dL
Normal: 8.0-42.0
Mine: 52.0

IGG Synthesis Rate/Index CSF: abnormal

Glucose CSF
Normal: 45-70
Mine: 71

Protein CSF mg/dL
Normal: 15-45
Mine: 83

Oligoclonal Bands:
"5 identical gamma restriction bands are observed in CSF and Serum. This is indicative of systematic rather than intra-cerebral synthesis of gammaglobulins."

Now this last one is the clincher. This is a "pattern 4" readout with identical/mirror bands in both CSF and Serum. USUALLY doesn't indicate MS because MS has a tendency toward "pattern 2" with SEPERATE and distinct bands in just the CSF outside the blood. My pattern is more indicative of a systematic autoimmune disease like lupus, rheumatoid arthritis, (a whole bunch). HOWEVER, I've read a pattern 4 doesn't necessarily rule out MS. There are people diagnosed with MS with no oligoclonal bands at all.

I'm already negative for HIV, meningitis, hepatitis, etc. Nothing like that.

My 2nd neurologist says he doesn't think it's lupus. He said if I had separate oligoclonal bands in just CSF I would have been a "slam-dunk" for an MS diagnosis. But because of that one test he doesn't know.

So now I wait....again. I see a MS specialist in February 2023. Anyone have similar experiences and results. Are there people out there that were diagnosed with MS that didn't have the typical, "expected" test results?

If you got this far, thanks for your time and consideration. Love ya'll.
Last edited by DudeFromPA on Sat Nov 12, 2022 7:13 am, edited 2 times in total.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

I forgot to add I've had a chronic Seborrheic dermatitis rashes in my scalp, ears, eyebrows, chin, chest, and genital region for several years now as well. I'm on meds that control it pretty well now but another interesting symptom. I've read this can be one of the first signs of early-onset Parkinson's....ugh. Who knows.
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

hi and welcome to TiMS :) i have an unusual approach to all this business and it is not really down the dx track you're currently and frustratingly travelling. it's more along the lines of: while you pursue dx, what's the best you can do with self care, via any modifiable elements in your control? for years i have tended to go after optimizing essential nutrients first, and more recently time has made it clear hormones also need attention. beyond that, I'm an ms poster child based on my genetics, gender, and location. i still do everything I can, but i definitely think i'd be better off now, if i'd learned about and acted on a few things years ago. so, if you'd like to head down this sort of investigative route, say the word and we can see if there's a reasonable way forward :)
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

jimmylegs wrote: Sat Nov 12, 2022 11:09 am hi and welcome to TiMS :) i have an unusual approach to all this business and it is not really down the dx track you're currently and frustratingly travelling. it's more along the lines of: while you pursue dx, what's the best you can do with self care, via any modifiable elements in your control? for years i have tended to go after optimizing essential nutrients first, and more recently time has made it clear hormones also need attention. beyond that, I'm an ms poster child based on my genetics, gender, and location. i still do everything I can, but i definitely think i'd be better off now, if i'd learned about and acted on a few things years ago. so, if you'd like to head down this sort of investigative route, say the word and we can see if there's a reasonable way forward :)
Thanks, friend. Yeah, since this all has been going down my IBS has went off big time to make my life even that much more awesome right now.

I started a new FODMAP diet for IBS I've never even heard of until recently. So far, my gut has been 100 times better and I feel great there. Also on probiotics. This has been a huge relief.

I can handle anything thrown my way. The one thing I can't is being ill and injured enough not to work and support my family. That's my biggest stress. No amount essential nutrients are gonna pay my bills.

I'm sure so many have gone through the same thing. This long, drawn out medical limbo with no answers and solutions but life doesn't let you just you sit home injured and sick bill free while doctors take all the time in the world to ponder your situation once every few months.
User avatar
Scott1
Volunteer Moderator
Posts: 1651
Joined: Wed Oct 22, 2008 2:00 pm

Re: Does this sound like MS or not? (LONG Story)

Post by Scott1 »

Hi,
You are really being messed around. Obviously, something is not right.
If what you say about your primary care provider is correct, then that's not impressive at all. Based on what you have said, I would be finding another doctor.
I can't say what your condition is but you have enough symptoms to be taken very seriously. See the specialist in February but if MS is ruled out be prepared to say "what is it then?"
If further diagnostics are not offered and no answer is provided, change doctors and get out of the circle of advisors you are in.
Regards
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

Scott1 wrote: Sat Nov 12, 2022 4:24 pm Hi,
You are really being messed around. Obviously, something is not right.
If what you say about your primary care provider is correct, then that's not impressive at all. Based on what you have said, I would be finding another doctor.
I can't say what your condition is but you have enough symptoms to be taken very seriously. See the specialist in February but if MS is ruled out be prepared to say "what is it then?"
If further diagnostics are not offered and no answer is provided, change doctors and get out of the circle of advisors you are in.
Regards
Yeah, it's been exhausting.

I wonder if anyone else around here had matching/identical oligoclonal bands in both CSF and serum and still got diagnosed with MS.

Because the oligoclonal bands test was literally the only test that kept the neurologist from saying its MS....even though everything else says MS.

I understand there are tons of other autoimmune diseases out there that can mimic MS and other things. That may be my case. I don't know.

But is a pattern 2 oligoclonal result the ONLY case ever?

Are brain lesions typical for MS in the periventricular and subcortical regions of the brain?
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

Neurologist #1 says: "You're too old for MS." (I'm 38)

"MS can occur at any age, but onset usually occurs around 20 and 40 years of age." (Mayo Clinic)

Neurologist #2: "Your brain lesions are small though" (6mm)

"About 80% of all the lesions were smaller than 8 mm in nominal diameter." (Journal of Neurology, Neurosurgery, & Psychiatry)


Where did these neurologists go to school?
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

hi again, i haven't previously looked at gall bladder issues so i found this link very interesting
https://www.liverdoctor.com/things-you- ... llbladder/
do you take any of the things mentioned such as the liver tonic, or the bile supplement, to help absorb essential nutrients? have you been able to test any essential nutrient levels? there are a few worth that could be worth monitoring if you can and are interested. either way, all the best with the medical investigations.
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
User avatar
Scott1
Volunteer Moderator
Posts: 1651
Joined: Wed Oct 22, 2008 2:00 pm

Re: Does this sound like MS or not? (LONG Story)

Post by Scott1 »

I was 37 when I was diagnosed but I'd had symptoms for years. Referring to age and ignoring your history is a useless approach.

When you have decent attack the MRI can show lots of small lesions. Most resolve but the size is irrelevant. You have abnormal signs on an MRI scan.

You may or may not have MS. If they rule it out then keep asking "what is it then?"

Don't give up, and good luck.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

Scott1 wrote: Sun Nov 13, 2022 2:30 pm I was 37 when I was diagnosed but I'd had symptoms for years. Referring to age and ignoring your history is a useless approach.

When you have decent attack the MRI can show lots of small lesions. Most resolve but the size is irrelevant. You have abnormal signs on an MRI scan.

You may or may not have MS. If they rule it out then keep asking "what is it then?"

Don't give up, and good luck.
Thanks, Scott. Appreciate it!
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

jimmylegs wrote: Sun Nov 13, 2022 12:05 pm hi again, i haven't previously looked at gall bladder issues so i found this link very interesting
https://www.liverdoctor.com/things-you- ... llbladder/
do you take any of the things mentioned such as the liver tonic, or the bile supplement, to help absorb essential nutrients? have you been able to test any essential nutrient levels? there are a few worth that could be worth monitoring if you can and are interested.
either way, all the best with the medical investigations.
Thanks, friend! Bookmarked that one. So far, all my vitamin and nutrient levels have shown to be in good shape. I do have the fatty liver from no gall bladder and have a kidney stones issue.

After losing my gall bladder, it was definitely a hard and fast learning curve with what I could and couldn't eat anymore. I became lactose intolerant as well even though I wasn't before.

I'm actually doing a modified carnivore diet right now (I can no longer handle digesting about any vegetable...veggies are a death sentence for my gut) and then occasionally bounce back and forth with the FODMAP foods. Feeling MUCH better and finally losing the extra 50lbs I could never seem to get off me the past 5 years. Bloating completely gone. Happy stools. Good times there for once.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

Let me add another very annoying symptom....excessive sweating. I mean buckets of sweat, drenched shirts, etc. If it's hot out I might as well be naked because the sweat will be running down my arms and off my body in buckets.

If I try and take a short walk to keep my legs moving, even if it is 20°F outside with a stiff winter wind, I will return with a DRENCHED undershirt. I have to peel it off for a new shirt. Getting tired of this.

I'm not a large person. If you saw me you would say I look fit and maybe even work out (I use to weight lift back in my 20's and the Marines). I'm actually 50lbs over where I want to be. Technically, around 30lbs overweight for my height but I'm built broad and wide so carry it well and don't look overweight.

I've never sweat like this in my life. Even years ago when I was actually heavier weighted, I didn't sweat like this.
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

hi again i will circle back on the nutrition notes above but thought i'd check in on whether you'd ever seen anything about sweating as an omeprazole side effect? related:
Proton Pump Inhibitor–induced Hyperhidrosis: Important but Not Recognized
https://www.sciencedirect.com/science/a ... 0520305630
"... Omeprazole was held before performing extensive biochemical workup. Hyperhidrosis resolved after 5 days and recurred within 3 days of re-introducing omeprazole. Omeprazole was switched to ranitidine, and hyperhidrosis resolved within 1 month."
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

jimmylegs wrote: Mon Nov 14, 2022 12:18 pm hi again i will circle back on the nutrition notes above but thought i'd check in on whether you'd ever seen anything about sweating as an omeprazole side effect? related:
Proton Pump Inhibitor–induced Hyperhidrosis: Important but Not Recognized
https://www.sciencedirect.com/science/a ... 0520305630
"... Omeprazole was held before performing extensive biochemical workup. Hyperhidrosis resolved after 5 days and recurred within 3 days of re-introducing omeprazole. Omeprazole was switched to ranitidine, and hyperhidrosis resolved within 1 month."
Very interesting. Thanks. I, unfortunately, have no other alternative to be on permanent Omeprazole but I didn't know that as a side effect or other alternatives.
NHE
Volunteer Moderator
Posts: 5919
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Does this sound like MS or not? (LONG Story)

Post by NHE »

DudeFromPA wrote: Mon Nov 14, 2022 12:54 pm Very interesting. Thanks. I, unfortunately, have no other alternative to be on permanent Omeprazole but I didn't know that as a side effect or other alternatives.
Omeprazole can cause vitamin B12 deficiency. Have you had your B12 level checked? Note, a complete B12 test should also include folate, homocysteine and methylmalonic acid.

https://www.drugs.com/pro/omeprazole.html
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Undiagnosed”