Where do I go from here?

A forum to talk about the general challenges of daily life with MS.

Where do I go from here?

Postby Edward » Thu May 27, 2010 1:15 pm

Hello Everyone,

This is my first post to this forum and from what I"ve read, I think there's a lot of great people here with a lot more experience than I have on MS and would like some advice or guidance as to where I can go from here.

A Little background, I'm 46 and have had 2 previous "flare-ups" one in 2003 and again in 2006 which at the time couldn't be explained or understood at the time, and I was tested for ADHD, arthritis, and a number of other things with all negative results.

Things kind of went back to "normal" with the exception of my cognitive difficulties but for the most part I thought I was mostly back on my game.

Then at the beginning of 2009, I felt something happening again, and I started really losing my short term memory making my work very difficult again. I'm a reasearch engineer so I do a lot of analysis that requires me to work long hours with a lot of concentration every day.

Then the physical symptoms started.

Ringing in the ears (real bad)
The worst headaches I've ever had which I never had before (around my temples)
Nausea
Coordination problems
Weakness
Severe Fatigue
Blurry vision
Heat sensitivity ( pretty bad)
Numbness in arms, legs, and face with lips tingling on and off

I'm on my third Neurologist here in Southern California and after multiple tests for MS the only thing we have been able to find are very small lesions in my brain but not nearly the size or number of lesions needed for a diagnosis.

I keep getting the same story that it's all in my head.

After reading everything I could find on this topic, I can agree that depression and/or anxiety could cause many of my problems like:

Ringing in the ears
Headaches
Nausea
Coordination problems
Weakness
Fatigue
Blurry vision
Numbness

But what I don't buy is that depression and/or anxiety could cause me to suffer from heat intolerance.

I love the sun, I love the heat, I love boating in hot weather and that's why I live in Southern California, and now I'm unable to go outside on a :( warm day as my symptoms get real bad especially the headaches which are unbearable.

My latest Neuro at least is treating my fatigue and spasticity symptoms with Amantadine (200mg daily), and Baclofen (10-20 mg daily) to help me function and I've been able return to work part time (doing administrative work to keep my insurance)

As a side note, my sister had MS that started the exact same way and she was unable to be diagnosed until she lost nearly 90% functionality of one arm. Then over a year later, a spinal tap finally confirmed the diagnosis. She lost her battle with MS in 2007 after suffering with it for almost 21 years.

It seems that I'm following the same path as my sister as far as symptoms and the lack of test results to confirm what's going on. I really don't want to lose the use of a limb before I get this diagnosed and treated.

I'm very frustrated with the conclusions I hear from NEurlogists that keep insisting that everything is happening due to depression and/or anxiety and they want to keep pumping me full of anti-depressants and anti-anxiety medications which haven't helped after trying many of them.

I'm confused and frustrated and don't know where to turn for help. Does anyone have any experience with how I'm feeling that can advise me of what I should do next or a good Neurologist in Southern California that can help me?

Thank you

Ed
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Postby leetz » Fri May 28, 2010 8:51 pm

hello Ed...just wanted to let u know that a spinal tap was the only way that i was diagnosed after 8 years of symptoms...painful but it helps...u are not alone or crazy...God bless!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Edward » Thu Jul 01, 2010 7:45 am

Thank you for the reply Leetz.

This forum is saving me from having an anxiety breakdown. Symptoms continue to get worse especially numbness in limbs and now left side of torso. I don't know if I could handle living with this for 8 years without a diagnosis one way or the other. I don't know how others have been able to handle this without support. These forums are a mental life saver for me.

Thanks again.

Ed
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Postby elyse_peace » Thu Jul 01, 2010 8:45 am

Hi Edward -
Welcome to this site. I have been ill for a long time, but only found this site at the end of last year. The people here are great. And supportive. I have learned much.
Sorry you are having such a hard time. And very sorry about your sister.
I agree with leetz. A spinal tap (lumbar puncture) is definitive. There is a protein in spinal fluid that is only there with MS. I could not handle the waiting. It is torture, and you are suffering enough.
Good luck.
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Postby gothicrosie » Sat Jul 03, 2010 8:38 pm

Edward,

With your family history, I am surprised they are 'writing' you off.

Have you been to see an MS specialist?

Diagnosis for MS is a tricky business and most doctors want to be absolutely sure. You mentioned to 'flairs' but were they "clinically isolated events" that were treated by a physician?

The McDonald Criteria ( <shortened url> ) is what is considered to be the 'check-list' for MS. You will need to fill these requirements to get a MS diagnosis.

I hope you find some definite answers soon.
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby Edward » Thu Jul 29, 2010 9:34 am

Thank you all for the replies it really helps to know others understand what I'm going through. I need to make one minor clarification in that, I don't think I've been completely "written off" so to speak, but the Neuro's seem to encourage me to continue seeking psycho therapy and/or learn meditation techniques to cope with the weird stuff going on with my body.

I guess that's all they can do when their constrained by the McDonalds criteria for making a positive diagnosis. It just seems wrong that "IF" it is MS I'm dealing with, the process requires that the symptoms and problems get worse before they will start treatment to stop the spread of the disease. That to me is more frustrating than anything else!

From my last post until now, my right side has also become mostly numb similar to my left side which has been numb for over 6 months now. My throat is also numb that that's a real joy when I swallow.

Anyway I don't want to sound like I'm whining. I'm learning to live with it the best I can, and taking things one day at a time.

One bigger problem I have now is getting my wife and kids up to speed because they don't completely believe or understand what's going on with me which is causing a little tension in our family. I don't know what to say to make them understand this without a diagnosis and because it's all internal with no obvious outward signs, they are still not convinced anything is wrong other than I may be depressed or it could be caused by something else.

Any advice to help my family understand what it's like to not be diagnosed and deal with this would be greatly appreciated.

Thank you all again for your replies and support.

-Ed
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Postby jimmylegs » Sat Jul 31, 2010 2:10 pm

hi ed one approach would be to get a bunch of nutrient levels done to see if they match an ms patient profile for deficiency.

here is a list of things ms patients are typically low in. next to it if i have one, i have put the target value. if you get results and they come back 'normal' that's fine but you want to be in the 'healthy control' part of the normal range, not the 'ms patient' part of the normal range.

some low levels in ms patients:

-vitamin b12 - aim for minimum 500 pmol/L
-magnesium - aim for minimum .91 (sorry i'll get back to you with the units)
-zinc - aim for 18.2 umol/L (staying within 17.5-19.5 would be okay i think)
-vitamin d3 - aim for minimum 100 nmol/L.. 150 is better, 250 is the max. (FYI it's easier to get your d3 level up when your zinc is replete)
- uric acid (optional) - ms average is 194 umol/L, healthy controls sit at 290-300 umol/L.
(uric acid is not a nutrient just an indicator of your antioxidant status and is correlated with your zinc status - low zinc = low uric acid)

that's just a short list of key things to get you started. five simple blood tests and then you know where you stand.

HTH,
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Postby Edward » Mon Aug 02, 2010 7:15 am

Hi jummylegs,

Thank you for the good information. I will have these things checked. I am also being watched for anything related to/or complicated by Hemachromatosis. I discovered that my family has Hemachromotis as a risk factor when two of my brothers were diagnosed with that. I got checked by a hematologist and I was told i have the mutation in my genes to be at risk of getting this disease. So now I'm on the watch list for that and am getting tested again this month.

When I discovered that this runs in our family, I couldn't help but to wonder if my sister who passed away from MS could have also been suffering complications due to Hemachromatosis and no one knew to have her tested for that. That could explain why she declined very quickly after about ten years.

Thanks again for the great information.

-Ed
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Postby Edward » Mon Aug 02, 2010 7:45 am

Oh and sorry I didn't explain what Hemachromatosis is for those that are unfamiliar with this disease. Hemachromatosis is a disease that causes excess iron to build up in the body because the body loses it's ability to metabolize it and send it out like other minerals. If gone untreated it can cause liver damage, pancrease damage, and damage to the brain.

If my sister was possibly suffering from this, this could have exacerbated her symptoms and I think could have accelerated the progression of the disease.

-Ed
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Postby jimmylegs » Mon Aug 02, 2010 5:21 pm

hi ed yes do keep an eye on the hemochromatosis thing - my neighbour has it and without regular phlebotomy he ends up overloaded.
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Postby Richierich » Thu Aug 26, 2010 6:03 am

Hi!

It’s good to hear that the forum really looks out for one another! I just joined as well but not because I think I have MS but because my dad just found out about it. It was a real shocker for me. It helps to know that you’re not entirely on your own. Maybe I can help my dad the way you seem to help each other. First I still need to learn a bit about MS. Not quite sure what I’m dealing with.
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Postby mattalleng » Mon Sep 13, 2010 8:15 pm

Okay, first of all I would like to ask, have you had a spinal tap yet? As mentioned above, a spinal tap is pretty much the only definitive way to get a positive diagnosis even after an MRI. By getting a spinal tap they can check your spinal fluid for myelin proteins. keep in mind, A NEGATIVE SPINAL TAP MEANS NOTHING, it is possible to have multiple sclerosis but still get a negative result on a spinal tap. I heard from a neurologist that it is best to have a spinal tap done when your symptoms are at their worst, there will be more myelin protein in your fluids during a flair up, makes sense but I don't know how true this is. So if you haven't already got one, I recommend you make an appointment as soon as possible especially if your symptoms are progressing.

secondly, depending on how long ago you got your last MRI, you might want to get another one done. If you have MS and your symptoms are getting worse than your brain lesions are probably growing or multiplying, maybe the MRI will show more than it did last time.

Lastly, have you been checked for Lyme disease? Lyme disease has a lot of similar symptoms to MS, and if you like being outside in Southern California then you have a good chance of running into ticks, I would really push for the blood work, possibly a second MRI, and without a doubt a spinal tap as soon as humanly possible.

NOTE ON SPINAL TAP: I was really scared to get my spinal tap done because everyone told me it hurt like hell, however, I found that it was not that painful. I am 20 years old and I will admit that I do have a pretty good tolerance for pain, but I will say that the local anesthetics seriously hurt worse than the actual lumbar puncture. So don't procrastinate on the spinal tap like a lot of people do, especially if you want your enemy to have a face. An official diagnosis will make your end of the battle much easier and it will help your family understand.

Good luck, and let us know how it goes!

-Matt

PS- Here's a link to my blog, you might be interested in an article I wrote about what MS is if you already haven't done your research, I tried to write it for people with little to no medical knowledge, this way family and friends could read about the disease and understand it in plain terms, people are afraid of what they understand, they avoid what they don't understand, my aim was to eliminate that factor. Good luck!

http://mattsms.blogspot.com/2010/09/so- ... rosis.html
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Postby Bubba » Tue Sep 14, 2010 4:33 pm

Yeppers, a LP will pretty much giveyou the answer.
Now, as for your symtoms, I have a BAD word for you that doesnt make any sense to me:
EXERSIZE and the right vitamins/minerals. I also take 975 mg a day of asprin.
Now, back to the hated word.....
I am a bbq'in, beer drinking lazy country boy. Every doctor said the dreaded word, excersize.
I was having almost every symptom you are. Then one day, (really don't know why) I started a little escersize regiment. Started small (like 5 sit ups, bench pressing 45lbs 5 - 10x, maybe a few light curls, and a quarter mile on the treadmill. That wore me slap out!
After a month of doing this religously, I started realizing that my headaches and brain fog disappeared. Then fatigue went away, then heat tolerance went way up.
Now, as much as I hate it, I do it. I do as much as I can handle for 30min to an hour. Work up a good sweat.
Now I am FAR less stressed, actually sleep at night, have energy during the day, ect...Instead of running I bought a bicycle. Guess the docs know what they are talking about.
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
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A Few quick updates

Postby Edward » Fri Sep 24, 2010 6:37 am

Hello Again and thanks again for the great input and suggestions for testing.

to answer some of the questions, I had a LP done in January of this year which was negative. I had a second MRI in June which I was told that the lesions had not grown or changed in any way. I wish I could have seen it for myself, but I don't have the software to read the MRI on a disc that I got from the Neuro. As a side note, this Neuro also ordered a MRIA which I guess is an angiogram of my brain. He said there is a small congential narrowing of some of the arteries but nothing bad enough to conclude that it could be a cause of the symptoms.

Ok so back to some recent activity. I was started on Lyrica (50mg) a day and was told to ramp up by 50mg a day each week until either I feel something different or I've reached the max allowable.

On August 7th, after I was up to 150mg in the AM and 150mg in the PM I had a pretty bad flare up or something, but my figertips started tingling and going so numb, I lost all feeling to the point where I couldn't even feel the strings on my guitar! Then my lips and toungue started tingling and going numb so I got back into my Neuro and told him what was going on thinking maybe I was having a bad reaction to the Lyrica, so he started ramping me off the Lyrica by 50mg every 72 hrs, and started Cymbalta 30mg daily. He also decided to treat me with a 6 day treatment of methylprednisolone (4mg) starting with 6 the first day, 5 the second, etc...

It made me pretty tired and weak during that treatment but I did feel the numbess and tingling pull back and i did feel a little more energetic. Then about a week after that, the bad headaches stopped happening even if I get a little too warm. I thought wow this is great!

My Neuro said that means you have some sort of "indeterminate inflammatory disease" I asked what that was supposed to mean and he said he doesn't know exactly but all he said he can do is keep an eye on things and see what happens next. He said because of the dangers associated with Steroids, he wouldn't want to treat me again until they have a confirmed diagnosis.

I now have an appointment with University of California Irvine on the 8th of Oct.

By the way, reagarding the exercise input, I agree with exercise, and I do walk and work in my yard. And I do feel better if i don't over do anything. Of course when the sun comes up, I run and duck for cover until it cools off in the evening.

Thanks again

Ed
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Postby mattalleng » Fri Sep 24, 2010 10:05 am

Glad you got in with the University, they seem to always be on top of things, I'm in the process of going to Loma Linda to see a specialist, I can't wait! I hope you get a better answer there... I am assuming they ruled out the obvious possibility of stroke and lime disease?

I always look at the obvious, I used to ride dirt bikes all the time, and a few years ago my friend's sister got a brand-new Honda CRF150. We loaded it up, drove three hours out to the desert, and when we got there we could NOT get it started, she was almost in tears and we were all tearing our hair out tweaking with the carburetor, checking wires, all the fancy stuff. Turns out there was NO GAS lol and so I have learned to always avoid over complicating and over thinking a situation.

Now I understand we are dealing with health here but I think the basic principle can still apply, I have noticed that some doctors like to jump to conclusions and complicate things and sometimes the answer is so simple that its overlooked.

good luck!
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