So here's my story. This just sucks!

New members should feel free to introduce themselves here

So here's my story. This just sucks!

Postby luckyme » Fri Oct 14, 2016 4:52 am

Hi all. I am new to this site. So here's my story. I am a 41 yr old male. I do not have the official dx as of now however my appt on the 26th with neuro I suspect I will. I have been in flare up for aprox 3 months now. I am jc positive. Lyme negative. Vit d level is at 11. Vit b1 level at 3. Recent MRI's showed 7 lesions on the brain, one of which was active, one lesion on c-spine, not active, and one lesion on t-spine active. As far as symptoms go, it all started with an abcessed tooth. Shortly after my entire body went numb. Went on prednisone and the numbing subsided except for my hands. At this point it has gotten better. Just fingertips are numb. What is most annoying is the damn buzzing!!! Mostly legs and back. Also experiencing fatigue and some confusion. Some memory problems too. I just don't feel like my usual self in the head. When I think back, I suspect I probably had this maybe 10 yrs judging by the little subtle things that I just overlooked over the years. I'm concerned about my job. I'm in Hvac/ mechanical and it can be taxing sometimes. Lots of heavy lifting, ladder work, rooftop work, ect. I told my boss... Prob shouldn't have done that... But now he's concerned about me using ladders and such. I'm 41. I got another 20 years before I can retire! Disability cannot compare to my wages. Me and my wife have big bills. Of all of this, that is my biggest concern. Very stressful!! Can my boss legally terminate me? Iv been with the same contractor for 23 yrs!
luckyme
Family Member
 
Posts: 28
Joined: Thu Oct 13, 2016 9:14 am

Advertisement

Re: So here's my story. This just sucks!

Postby luckyme » Fri Oct 14, 2016 5:28 am

Oh and another thing! Though I love my family, wife and friends that know, I'm a little tired of hearing" I know this person who's had ms for 20 yrs and she's/ he's absolutely fine!" Although that may be true for some, research shows me that it's kinda rare. I also get the" how ya feeling" a lot too. Though I don't say it, I wanna say I'm feeling tired of being asked how I feel! Anybody feel the same on this?
luckyme
Family Member
 
Posts: 28
Joined: Thu Oct 13, 2016 9:14 am

Re: So here's my story. This just sucks!

Postby ElliotB » Fri Oct 14, 2016 8:46 am

Hi and welcome to TIMS. Know that you are among friends here.

It is amazing how even family members can be so clueless - I unfortunately know this all too well myself! You need to learn to look the other way when insensitive comments are made.

In any case, there is still a lot of good life and living after a diagnosis of any major illness, but it may be a little different than what you are currently undertaking.

Keep in mind that there are about 400 illness that mimic the symptoms of MS, and something as simple as a vitamin B deficiency can explain some of your issues.


"Lots of heavy lifting, ladder work, rooftop work, ect."


Depending on your final diagnosis, a change may be necessary.

Missed that you had a MRI done and blood work so I have updated my post. Hopefully you will have some kind of diagnosis soon.


"Can my boss legally terminate me."

The ADA (American Disabilities Act) gives you many rights and protections, but frankly, if you have something serious like MS, you will probably have to seek other employment or at the least a different position within the company should you be able to continue to work. Employers are required to make reasonable accommodations. You need to do what is best for you.
Last edited by ElliotB on Sat Oct 15, 2016 2:09 pm, edited 5 times in total.
ElliotB
Family Elder
 
Posts: 1544
Joined: Mon Feb 03, 2014 5:08 pm

Re: So here's my story. This just sucks!

Postby Snoopy » Fri Oct 14, 2016 11:38 am

Hello luckyme,

With lesions on your brain, c-spine and T-spine MS is a real possibility.

I'm a little tired of hearing" I know this person who's had ms for 20 yrs and she's/ he's absolutely fine!" Although that may be true for some, research shows me that it's kinda rare.


Sometimes you just need to let things roll off of you without taking it personally. It's difficult to know the reason why someone would say a person with MS is absolutely fine. Makes me think the person telling you really has not understanding of MS is or what the disease can do. There are many people with this disease that don't "look" like anything is wrong with them. Many symptoms are not visible. When I run into friends and am asked how I am doing, my response is always; "I'm doing fine, thanks for asking. The majority of the time strangers would have no idea anything is wrong with me. I have been diagnosed with MS for 31 years with symptoms that go back to childhood. Am I "absolutely fine" of course not...I have MS :roll: I do quite well considering the length of time I have had this disease and the fact my spinal cord has always been the most affected

What is most annoying is the damn buzzing!!! Mostly legs and back

Yes, it annoying but it is possible to ignore it.
Snoopy
Family Elder
 
Posts: 232
Joined: Wed Apr 13, 2016 12:14 pm

Re: So here's my story. This just sucks!

Postby luckyme » Fri Oct 14, 2016 12:21 pm

Iv had so many tests the last couple weeks that I feel like a pin cushion. Iv had 10 tubes of blood for all types of test, lyme, jcv, vit and mineral defficiency, and some others that I can't remember what they were for. I've had MRI's with and without contrast on the brain, C-spine and T-spine. Iv seem my family dr and also seen the neuro dr once so far. She came highly recommended as she and a whole team of drs specialize in ms cases. I feel pretty good about her so that's good. She told me at my first visit that she thought that my case was more than likely ms. She wanted to rule out the others hence the extensive bloodwork she ordered. I go see her again on the 26 th of this month to review the results. Since then she called me and put me on 50000 iu vit d and b complex because of the deficiency. I am lucky for my wife works in family drs office so she is able to get results on the tests very quick so I don't have to wait till I see the dr weeks later. Funny how that works. Iv taken that info and done some research. Everything is pretty concurrent with ms so that's why I'm pretty sure I will get an official dx on the 26 th. I hope not but I'm just being realistic with myself.
luckyme
Family Member
 
Posts: 28
Joined: Thu Oct 13, 2016 9:14 am

Re: So here's my story. This just sucks!

Postby Scott1 » Fri Oct 14, 2016 3:16 pm

Hi,

It sounds like you have good reason to be on these boards. When I was diagnosed over 20 years ago the neurologist I saw was a very experienced man on the brink of retirement. His advice to me about ideas on MS was it was like watching a pendulum. Everybody swings one way and with time they swing to the opposite point of view. You see this happen not just with doctors but with the people you mix with. It can be annoying and sometimes disturbing but you get used to it.
What I have found most useful is to separate the symptoms from the umbrella definition of MS. I just remember the pendulum rule when I deal with things. If you look to manage each symptom as its own problem then sometimes other problems go away.
It sounds like you are being checked for infection, which is good. Infections cause inflammation.Some foods do also so read widely about diet and only think about inflammation. As a clue avoid added sugar and gluten to start with.
There are a variety of treatments so remember the pendulum. Thankfully they are checking for JCV, some people don't.
The first page of this post may help but don't get bogged down by it - regimens-f22/topic24019.html

As your job is physical you need to stay mobile. This is the time to start a form of exercise that keeps the little muscles strong. My preference is Pilates but some forms of Yoga may help. Also find a really good masseur who understands both pressure point and deep tissue work. The more often you release tight muscles the better but you need to exercise the little muscles. Tight muscles and weak muscles equals restricted movement.
Good luck with your doctors appointment.
Regards.
User avatar
Scott1
Volunteer Moderator
 
Posts: 1401
Joined: Wed Oct 22, 2008 3:00 pm

Re: So here's my story. This just sucks!

Postby luckyme » Fri Oct 14, 2016 4:12 pm

Thank you. I'm finding this site very helpful. Thanks to all. Some great people here!!
luckyme
Family Member
 
Posts: 28
Joined: Thu Oct 13, 2016 9:14 am

Re: So here's my story. This just sucks!

Postby lyndacarol » Sat Oct 15, 2016 1:46 pm

luckyme wrote:I am a 41 yr old male. I do not have the official dx as of now however my appt on the 26th with neuro I suspect I will. I have been in flare up for aprox 3 months now. I am jc positive. Lyme negative. Vit d level is at 11. Vit b1 level at 3. Recent MRI's showed 7 lesions on the brain, one of which was active, one lesion on c-spine, not active, and one lesion on t-spine active. As far as symptoms go, it all started with an abcessed tooth. Shortly after my entire body went numb. Went on prednisone and the numbing subsided except for my hands. At this point it has gotten better. Just fingertips are numb. What is most annoying is the damn buzzing!!! Mostly legs and back. Also experiencing fatigue and some confusion. Some memory problems too. I just don't feel like my usual self in the head. When I think back, I suspect I probably had this maybe 10 yrs judging by the little subtle things that I just overlooked over the years.
Welcome to ThisIsMS, luckyme.

As you probably know by this time, your vitamin D level at 11 ng/mL is very deficient. Vitamin D deficiency can lead to neurological symptoms… Actually, since vitamin D is necessary for the smooth functioning of EVERY system in the body, a deficiency can result in almost any kind of symptom.

It sounds like you have a good neuro – thorough, careful to rule out the other possible causes for your symptoms. It is absolutely appropriate for you to take high-dose (50,000 IU) vitamin D. Do you take that once a month, once a week, or once a day? After 3-6 months it is recommended that your doctor test your level again to be sure that you have reached an optimal level (according to GrassrootsHealth: http://www.GrassrootsHealth.net). It is also a good idea to have an annual vitamin D blood test from here on to be sure that you maintain the optimal level (which many neurologists believe patients with neurological symptoms should maintain between 80-100 ng/mL).

After the vitamin D level has been returned to an optimal level, it will take a while for the system effected by the deficiency to heal – it is not a quick fix.
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 4:00 pm

Re: So here's my story. This just sucks!

Postby luckyme » Sat Oct 15, 2016 4:36 pm

I take the vit d one pill once a week for 8 weeks then prob another blood draw to see where I'm at. I was wondering.... My sister was dx with lupus not too long ago. Are or can the diseases be related? Or were we exposed to something when we were kids to possibly cause the auto immune problems? Makes me wonder....
luckyme
Family Member
 
Posts: 28
Joined: Thu Oct 13, 2016 9:14 am

Re: So here's my story. This just sucks!

Postby lyndacarol » Sat Oct 15, 2016 6:30 pm

luckyme wrote:I take the vit d one pill once a week for 8 weeks then prob another blood draw to see where I'm at. I was wondering.... My sister was dx with lupus not too long ago. Are or can the diseases be related? Or were we exposed to something when we were kids to possibly cause the auto immune problems? Makes me wonder....
Yes, another Vit D test after 8 weeks of supplementation will be needed.

Although you are not yet officially diagnosed with MS, you may know that MS is categorized in the group of 100+ autoimmune diseases. Lupus is also in this group.

The cause of MS is unknown; I understand that the cause of lupus is also unknown. In my opinion (I have no medical background), it is possible that they have a common trigger.

I think it would be a good idea for both you and your sister to have the vitamin D blood test (the "25-hydroxy D"), in view of the following article:

Vitamin D in Lupus: New Kid on the Block? (2010)
Diane L Kamen M.D., M.S.C.R.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4185297/

Abstract
Vitamin D is an essential steroid hormone, with well-established effects on mineral metabolism, skeletal health, and recently established effects on the cardiovascular and immune systems. Vitamin D deficiency is highly prevalent and evidence is mounting that it contributes to the morbidity and mortality of multiple chronic diseases, including systemic lupus erythematosus (SLE). Patients with SLE avoid the sun because of photosensitive rashes and potential for disease flare, so adequate oral supplementation is critical. This review will describe the prevalence of vitamin D deficiency in patients with SLE, identify risk factors for deficiency, describe the consequences of deficiency, and review current vitamin D recommendations for patients with rheumatic diseases.
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 4:00 pm

Re: So here's my story. This just sucks!

Postby Kiyaan » Wed Oct 19, 2016 9:56 am

Hey Luckyme,

Your post made me think back to my own situation a few years ago. I knew that the diagnosis is going to be MS a few months before I went in to see my neurologist after doing an MRI; I knew because quite a few people have MS in my family and it wasn't hard to get to that conclusion when I started having symtoms. Like you, disability did not compare to how much money I needed or made.

I asked my family doctor if he thinks I should go and purchase insurance against a catastrophic disease, which would have come with a significant payout (I think it was 250k) - my doctor said no, and I took his word for it. I regret taking his word for it.

I wonder if it's possible for you to purchase insurance now, since you don't actually have a diagnosis? It would be like hedging your bets: have MS? Here is a bunch of money. Or, don't have MS - which would be the end result you're hoping for anyway!
Kiyaan
Getting to Know You...
 
Posts: 15
Joined: Fri Dec 09, 2011 1:05 am

Re: So here's my story. This just sucks!

Postby vesta » Wed Oct 19, 2016 11:26 am

Hello:
Given your age and occupation I would suspect damage to your spinal cord which can obstruct blood/cerebrospinal fluid flow. Check out
CCSVI Alliance www.ccsvi.org/ Dr. Scott Rosa (Chiropractor) on their front page. Best diagnostic tool the Fonar cine upright MRI which can reveal any structural obstructions to fluid flows (cine means cinema as in moving, the exam reveals the speed of cerebrospinal fluid flow). The best treatment in this case would involve body manipulation (chiropractic) to get the fluids flowing correctly. While diet/suppléments can help, if you have a mechanical obstruction, it needs to be fixed if possible.

Best regards, Vesta
vesta
Family Elder
 
Posts: 563
Joined: Thu Jul 12, 2012 10:10 am
Location: Paris, France

Re: So here's my story. This just sucks!

Postby vesta » Wed Oct 19, 2016 11:53 am

Kiyaan wrote:Hey Luckyme,

Your post made me think back to my own situation a few years ago. I knew that the diagnosis is going to be MS a few months before I went in to see my neurologist after doing an MRI; I knew because quite a few people have MS in my family and it wasn't hard to get to that conclusion when I started having symtoms. Like you, disability did not compare to how much money I needed or made.

I asked my family doctor if he thinks I should go and purchase insurance against a catastrophic disease, which would have come with a significant payout (I think it was 250k) - my doctor said no, and I took his word for it. I regret taking his word for it.

I wonder if it's possible for you to purchase insurance now, since you don't actually have a diagnosis? It would be like hedging your bets: have MS? Here is a bunch of money. Or, don't have MS - which would be the end result you're hoping for anyway!


Hello again:

If it's possible to obtain that insurance since you don't have a MS diagnosis, I would get it. Act now.

Best, Vesta
vesta
Family Elder
 
Posts: 563
Joined: Thu Jul 12, 2012 10:10 am
Location: Paris, France

Re: So here's my story. This just sucks!

Postby luckyme » Wed Oct 19, 2016 12:07 pm

Isn't that illegal?
luckyme
Family Member
 
Posts: 28
Joined: Thu Oct 13, 2016 9:14 am

Re: So here's my story. This just sucks!

Postby ElliotB » Wed Oct 19, 2016 12:36 pm

Certainly not ethical, and if it was ever discovered, coverage would be denied. Since it has been documented here...

In any case unlike some illnesses like certain forms of cancer, MS is not necessarily/likely a short term death sentence.
ElliotB
Family Elder
 
Posts: 1544
Joined: Mon Feb 03, 2014 5:08 pm

Next

Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service