Nearly diagnosed looking for answers

[Snargle]

I’m a 40 year old father of 3 and active military. My wife is a family practice doctor and is effectively my doctor as well. I had a series of very strange neurologic symptoms August to October this year which made no sense. For a while she was convinced I had cauda equina syndrome, but when my symptoms disappeared just prior to the spinal MRI she began to suspect it was a psych issue. That did not sit well with me. Her explanation was that multiple neurological symptoms don’t just resolve on their own. In retrospect it didn’t help that I wasn’t telling her all my symptoms. Some of them I didn’t understand or explained away, but others I didn’t want to share because I hate being sick and considered “diseased”.

About a month later, my mother got a brain MRI for an unrelated issue and was diagnosed with MS. They are still attempting to figure out if it is PPMS or SPMS, but either way its serious. My sister had a clinical diagnosis of “Probable MS” 3 years ago, but her MRI came back normal and she lost her health care. She has been dealing with the issue since then, but basically living in denial. When my wife heard that my mother had MS a light came on and she began looking into the symptoms which lined up 100% with mine:

Numbness that started in left toes and climbed up left leg to the “saddle area”
Loss of sensation in the “saddle area”
Blurred vision and pain in left eye
Visual field defect in left eye
Urinary frequency, urgency, and incontinence
Massive fatigue
Uhthoff’s Sign
Lhermitte’s Sign
Intention tremor in right hand

Most of these symptoms resolved in late October. My vision has improved, but is still blurred and the visual field defect has been objectively observed. I didn’t see the ophthalmologist until after the symptoms resolved and there was no evidence of swelling in the optic nerve, so not a definitive case of Optic Neuritis. The numbness has gone away, as well as Lhermitte’s Sign (thank god), but I still have some lingering urinary issues and horrible fatigue.

I see my neurologist on Thursday (11 Nov) and already have an order in for a MRI with dye. In the past few years I had a few cases of numbness, urinary issues, and blurred vision that I wrote off. Based on this my wife says I already meet the criteria of separation in time and space. I gave away the majority of my blood for labs of the usual MS differentials including Lyme disease which came back negative.

I’m at a critical point in my life from a planning perspective. I need to decide if I am going to try to stay in the military another 6 years and retire for real or get out and start a new career that is MS friendly, effectively working the rest of my life. If I stay in the military I will have to fight annual medical evaluation boards, but the difference in retirement pay is significant between now and 6 years out. I need to have some idea of what to expect and how serious exacerbations can be.

Really what I need to know is, assuming I do have exacerbations, should I expect previous symptoms to reoccur and possibly get worse, or should I expect completely new symptoms? I want to stay in the military, and think I could make it happen with my current symptoms. If I get muscle weakness, vertigo, or a few other symptoms I will not be able to stay in the military. I’ve read the technical medical literature and research with some translation from my wife and I understand the unpredictable nature of this disease. What I’m looking for is real experiences from with people who have lived with this, not a doctor/PHD researcher writing a paper or conducting a clinical trial.

In your experience, during exacerbations did your previous symptoms reoccur and get worse, or did you typically get new ones?

[Seasha]

Welcome to MSWorld, Snargle! So glad you posted but sorry if you indeed have MS. Your symptoms seem classical MS, (if there is such a thing!), although only your neuro can give you a definitive diagnosis and the upcoming MRI will hopefully reveal much through this process.

As far as planning for the future in regards to the military, you might want to talk with others in our military veterans in their forum - http://www.msworld.org/forum/forumdisplay.php?f=91 You will gain much from those who have experience!

In your experience, during exacerbations did your previous symptoms reoccur and get worse, or did you typically get new ones?

All of the above for me, except L'Hermitte's! (and yes, thankfully - one time is enough) It is a complex disease and one ever knows, but many feel that the help of the myriad DMT's available now will help in the long run.

Again, welcome and thank you for your service

[SNOOPY]

Hello Snargle,

I see my neurologist on Thursday (11 Nov)

Did you mean Dec. 11?

Based on this my wife says I already meet the criteria of separation in time and space.

With all due respect to your wife this may not be the case.

The diagnostic criteria for Multiple Sclerosis:
http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

Hopefully you will have a MRI of the brain and cervical spine. There is no symptom(s) which are unique to MS as other conditions have the same symptoms.

Lhermitte’s Sign is not exclusive to MS but when related to this disease it is caused by lesions on the cervical spine.

In your experience, during exacerbations did your previous symptoms reoccur and get worse, or did you typically get new ones?

This question can have many different answers as each of us experience the disease and exacerbations differently.

In my case; My first 3 exacerbations mirrored each other except they would get more severe with each one. The last 2 exacerbation were minor in comparison with fewer and milder symptoms, but the same old symptoms.

[Reformed Yankee]

Snarled,

I hate to hear of your situation. I too am active duty military. I am in the middle of an MEB right now. I was told that MS is a disqualifying condition and I will be medically retired. I would like to stay, but it appears that is not going to be possible now.

MS rates a minimum of 30% disability from the VA. I know that doesn't compare to a normal salary, but it's better than nothing. The VA healthcare and medication benefit is huge as well. The medication is incredibly expensive and is available through the VA for $8 per month co pay.

Good luck with your diagnosis. You will find some great info on this site as well as some of the most understanding and supportive people around.

[KatieAgain]

Snargle???

Well O.K. Snargle it is then.

Im a Retired Active Duty Personnel Officer. I made it to 24 years. I was part of a Military Cluster.

I too have had the MEBs...I was retained...without restrictions. Apparently they are still retaining with some restictions for some people.

My advice is not to put the Horse before the Cart and you kick this can down the road as far as you can go. You will be retired, but you want as many years as you can gather. Think Retention vs. Separation or Retirement. Whatever you do...dont slap down separation paperwork. You need to be medically retired...and like I said..kick that can as far as you can.

If you get a diagnosis, immediately ask for a Second Opinion from a Civilian MS Specialist. Then make sure everything is documented with dotted Is and crossed Ts.

I think it is natural to prepare for the worst...but take one thing at a time. If you get a diagnosis...post in the Veterans Forum here at MS World and some of us will swoop in and walk the journey with you.

[onlyairfare]

Sorry for the reason you are here Snargle, but welcome to MSWorld.

I grew up in a military family, as my dad was a career officer, so I can relate some to your concerns. I was diagnosed with MS almost 40 years ago and I am still working full-time in a demanding career with little in the way of visible disability. So I think it is possible to continue your military career, but follow the advice of posters like KatieAgain who know more about military specifics.

My first symptom was optic neuritis, and since I had two episodes, one in each eye, several months apart, my initial diagnosis was pretty easy to make for my neuro-ophthalmologist. For about 10 - 15 years, ON was my main problem, one or two episodes every year or two. All of those resolved completely, I have not had ON in about the last 15 years, and my vision is fine, correctable to 20/20 with glasses, and no problems with color vision or field cut.

I have also had several episodes of unilateral leg weakness, which mostly resolved. Last summer I had my first relapse in more than 10 years, and it was pretty severe weakness on the right leg, which had been a little weak ever since a relapse in 2002. That summer relapse cleared and I am now back to where I was - very slight limp on the right. My job does not involve long hikes, so there is no visible disability.

With this disease you never know what will happen. I thought my entire life was totally ruined when I was diagnosed but here I am 39 years later with things not too different from how they would have been without the diagnosis of MS. Well, fatigue and other things treated with meds, dents from my Copaxone shots...but it has been manageable.

Stick with it if you can for those additional 6 years, since it will work out better financially.

Keep posting here for support and advice from those "in the know!" As much as anybody can "know" about MS.

Good luck.

[JamCakes]

Hi Snargle,

Thank you for your service in the military.

I was dx'd 9 years ago, but my first symptoms were in 2001. I lived two blocks from the WTC and was home to witness the attack - the second plane hitting, people jumping from the buildings to their deaths, both buildings collapsing. In the weeks following, migraines and weakness started, and on Oct 11, 2001, I went to an NYC emergency room with severe vertigo. Today, such symptoms might lead someone to suspect MS - on that day, however, I was dismissed with a diagnosis of "anxiety-induced vertigo", which seemed logical to me.

However my health continued to decline over the next few years, and finally in 2005 a serious flare-up of optic neuritis, weakness, lots of pain, a list of conditions that I don't bother to remember the names of. (Who cares which way my foot moves when you run a stick across it? Stupid thing to name)

Anyway, I had managed a large team and dozens of concurrent projects, but I was not able to after the 2005 flare-up. I think it took two years for my brain to rewire itself.

I am still not the same as I used to be - I am stuck in "middle management" because I can't really function well past 5 or 6pm on a good day. I am really good at what I do -- before 5. Then it starts fading into a blur of pain and fatigue. (it did take a while before I could make it to 5 when I was first ill, though)

I am still trying new things to combat this, using different diets, exercise, etc., I don't really like any of the drugs my neurologist gives me but some of them have worked fairly well.

Things eventually got better after I was ill enough to get a diagnosis. The job worked itself out (because I was demoted! to a less demanding position).

No one I work with knows I have MS (except a few people whom I worked with when I was very ill and demoted years ago). I don't ever talk about it at work. I might cop to having a migraine, I might take a sick day or occasionally "work from home" because "the plumber is coming" or whatever. In Corporate America it's a career death sentence to show any weakness. I imagine in the Military this is something you might not be able to keep a secret, so in the end, you might not have a choice as to your status.

Personally, if I were to be deployed right now to fight somewhere hot, where lives depended on me being able to hike and carry heavy things, I would not be able to it. Also my nerves are literally shot, not something you want in a soldier. When I feel sudden fear or anxiety, it engulfs me like a physical wave, I become dizzy. I used to be a pretty cool cucumber. Now I don't even watch stressful TV shows.

One thing that I can say that I have done well in this MS journey, is that I have always taken the next step expecting things to get better, even though I feared I might be in wheelchair or more incapcitated at any time. And I am still going on.

So I would say for you and for anyone just now confronting the prospect of a potentially grim future of disability, it probably won't work out the way you're thinking, so don't give anything up today. However, if it is taken from you, try to let it go.

Good luck, I hope your troubles resolve quickly.

-Mary