Waiting... waiting... waiting

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
rhs1040
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Waiting... waiting... waiting

Post by rhs1040 » Mon Aug 11, 2014 2:47 pm

Appreciation for anyone who reads this lengthy post, as I just want to get everything off my chest somewhere...

I am a 32 year old male, never had health issues before... At 8:30am on June 4th of this year, I'm sitting at work when a deep coolness enters the left side of my brain... I can FEEL it inside my brain slowly growing in intensity and now accompanied by sharp pains. My neck, especially on the left side, is now stiffening and increasingly shooting the same pain that's inside my head... sitting in my chair, I feel dizziness/vertigo. My left cheek near my lip became noticeably cold, felt like there was a focused cool breeze about a silver dollar size next to my lip. I began to realize something bad was happening, and I tried to slowly take stock of my breathing, heart rate, etc... nothing else besides the pain and stiffness registering abnormal to me. I got up to ask other folks in the office if they had Tylenol or something, and the comments were "you look really pale!". Walking back to my office, I noticed that my left eye is having trouble adjusting when I try to look ahead of me down the hallway. My wife and Dad arrived to drive me home, as I felt unsafe to pilot myself. I had lunch and instantly felt much better, less unstable with more discomfort than pain. A walk-in clinic PA feels I am experiencing my first migraine and prescribes some basic pills to take when I feel symptoms coming on. They don't work. For the next few days, fatigue and soreness in my head/neck are the primary complaint.

Next week, similar symptoms crop up (again, at work), but nowhere near as severe as the week prior. I make it through the day and am able to drive myself home. Most of my day is spent marveling at how weird it feels to have my cheek seemingly numb for no reason... a trusted colleague states that "the left side of your face is glassy" and not as reactive as the right side when I spoke. My wife is worried when I arrive home and feels the left side looks "droopy". Fearing a stroke and maybe increased issues that night, I visit the local ER and get right through to the front of the line. CAT scan comes up clean, the PA on-staff dismisses all my claims as "power of suggestion" (she didn't outright say this, but she began to take me much less seriously after I said colleagues had raised my concerns). I walked away with the suggestion that I see a neurologist and with a paper saying "You have Trigeminal Neuralgia". Guessing they had to stick something on the paperwork for insurance reasons?

We are able to get into a neurologist one town over the next day. After listening to my complaints, she instantly shot out "I don't know you, never seen you before. But your face is not symmetrical". Other than ordering a battery of tests (labs, MRI) and referrals (cardiologist), she says my experiences could be "50 different things" and we left feeling at least we'd get some answers soon.

Over the next few weeks, I go through all the motions (missing days at work, of course). I never have a "normal" day again, some form of symptom is always active... Cardiologist says everything is good (EKG, echo-cardiogram, 24-hour Holter monitor). At the neuro follow-up, she pulls out my paperwork and states that labwork is all within range of normal (533 level for B12, since I know many people around here want that info), but that the MRI revealed lesions on the left side of my brain and most likely this was MS. She offered an alternative of Lyme Disease, but we were so floored with the MS mention that we didn't ask a lot of questions. Referred to spinal tap (lumbar puncture) for confirmation.

Had the spinal tap (side note: My referral paperwork from neurologist says "DX: Multiple Sclerosis"), but the sample was apparently sent off to Colorado and is going to come back piecemeal to neuro's office. The neuro is difficult to get in to see, if you have private insurance, she is only available one afternoon a week in that next town over. Have a follow-up on the 21st, but the waiting is killing us. After the spinal, I began experiencing nausea that seems directly tired to how intense my neckache/headache is - at its peak last week, I could feel waves of pain washing over my brain as they washed over my stomach. I'm losing weight unexpectedly, I haven't really changed any dietary or exercise habits - maybe just eating less due to the nausea, but not enough change to account for 12 pounds of weight loss in a little over 2 months. My head feels like it weighs 30 pounds and it just feels like my neck is not strong enough to hold it upright all day without periods of rest... I feel some relief when I pitch my head forward and relax all neck muscles, but of course this is not practical for work.

I'm continuing to miss days at work due to active symptoms - I commute 60 minutes by car, and it's incredibly difficult to feel bad in the morning and have to decide if it's bad enough (or will turn bad enough) where I'll have to leave early or have to be rescued again by family. My boss expresses understanding and empathy in-person, even saying "we'll work around this"... but I truly feel she is now on-guard to remove or reduce my position, and she has already gotten HR involved by informing them I'll need to adjust my leave time and scheduled non-duty days this year... feels like she's laying the groundwork for dismissal by painting me as an absentee. I seriously wonder about consulting the union, HR, and/or legal specialists - but without a diagnosis, I feel this might be premature. Needless to say, I'm feeling overwhelmed, stressed, clueless, selfish, etc. We have 3 young kids and am the only bread-winner... this limbo stage is beyond frustrating.

Heat, stress, lack of sleep... all of these things seem to be triggers that take my daily mild symptoms to a new level. With 3 kids age 5 and younger, 2 hours of commute each day, and living in California's Central Valley (100+ degree temperatures from June to September), avoiding these triggers is impossible!

Reading about both MS and Lyme, I don't know what to hope for anymore... I just want an accurate diagnosis. I worry about more and more testing without answers, I truly feel my work is going to find a different reason to let me go and I'll be still feeling awful every day without resolution. As you can tell, I just need to vent!

ribeye
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Re: Waiting... waiting... waiting

Post by ribeye » Mon Aug 11, 2014 3:57 pm

Yeah, waiting is really awful. When I was diagnosed with ms, I had a feeling of relief because the process takes so long. Hang in there and take care. This forum is good for venting, too.

want2bike
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Re: Waiting... waiting... waiting

Post by want2bike » Tue Aug 12, 2014 3:58 am

One thing you never mention was if you had dental work done recently before the problem started. Amalgam(mercury) fillings and root canals have been linked to MS. Vaccines have been linked to MS. Many consider diet as a way of treating MS. Dr. Bergman gives a solution if you want to give it a try.

http://www.flcv.com/periodon.html




rhs1040
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Re: Waiting... waiting... waiting

Post by rhs1040 » Thu Aug 14, 2014 6:16 pm

OK... now I'm even more confused.

Neurologist called today to let me know that spinal tap results were all negative. Negative for Lyme. Negative for Valley Fever. Negative for West Nile. Negative for MS!!!??

From what I read, I thought there was no test for MS... that it was a diagnosis of exclusion? I was so stunned and the doc was very quick to get off the phone, so I didn't ask many questions. I see her next week, she suggested maybe a PET scan would be next. For people who have been through similar before, is there a test for MS? What would a PET scan reveal at this point?

rhs1040
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Re: Waiting... waiting... waiting

Post by rhs1040 » Mon Aug 18, 2014 11:00 pm

Is there anyone that could address my last question? Is there a way to test "negative for MS"? I meet with my neuro Thursday and I want to make sure I ask the right questions.

ElliotB
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Re: Waiting... waiting... waiting

Post by ElliotB » Mon Aug 18, 2014 11:27 pm

Is your Neurologist a MS specialists? After I had my first MRI just prior to being diagnosed, the Neurologist I was seeing at the time carefully examined my MRI and was certain I did not have MS in spite of knowing my family history (there is MS in my family). I then went to a MS specialists who viewed the exact same MRI and made her diagnosis correctly. It is important that you see a Neurologist that specializes in MS.

And just so you know, a "negative" spinal tap does not necessarily rule out MS. In fact, you can have MS without a MRI showing lesions. This is why you need to see a specialist.

"Heat, stress, lack of sleep..."

I live in South Florida and heat is an issue here for me too, especially during the summer months! I wear a cooling vest when I have to be outdoors for more than a very short period of time. It REALLY helps. You may want to consider one.

Stress and lack of sleep are issues you have to deal with on your own. Eliminating stress from your life is paramount. As far as sleep goes, try to take naps in the afternoon until you get back on a regular sleep pattern. In fact, short afternoon naps are recommended, period. I take one every day. It makes a huge difference.

Good luck and hope you feel better soon.

CaliReader
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Re: Waiting... waiting... waiting

Post by CaliReader » Tue Aug 19, 2014 8:49 am

The pet scan is to rule out cancer. Your lesions and especially your heat sensitivity suggest ms. You might need a spine mri. I would also visit an opthalmologist to see how your eyes are doing, since ms can hit the optic nerve and the cranial nerves that control eye movement and focus.

Being diagnosed is a miserable process, so take care of yourself for the next year or so while you get used to the idea and learn how to cope. Stay cool any way you can. Heat sensitivity makes everything much worse than it needs to be. I'm in the SF Bay Area and ever so grateful for the cool fog. I have friends and family in the Central Valley, but I only visit between October and April.

MS is a marathon, not a sprint. You will learn to live with it and cope. You may want to find a different neurologist. I would definitely find a primary care doctor you can trust to work with you. Meet them now, before you need much and they will help you down the road.

Take care.

rhs1040
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Re: Waiting... waiting... waiting

Post by rhs1040 » Tue Aug 19, 2014 7:46 pm

Thanks everyone for the tips and advice. I've been hearing people talk about the benefits of going to a big clinic (i.e. Sansum) so that everything is in-house and answers tend to come sooner. I might give that some consideration if the waiting game continues with my local neurologist and/or look into MS specialists as suggested.

I've been noticing that many of my symptoms have receded the last week. No surprise that it's been a little cooler temperature lately. Is it likely that being in the presence of so many triggers (heat, stress, etc.) that I could have had 2 months of constant symptoms? That's why MS seemed puzzling to me, it didn't remit as I read about until just now (and even then, mild symptoms are present by the end of the day).

Youarethecure
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Re: Waiting... waiting... waiting

Post by Youarethecure » Tue Aug 19, 2014 8:29 pm

It takes a different path for every person. You can have 1 day of constant symptoms or 5+ months. You can also go symptom free or in "remission" for 20+ years or 2 days. Everything about this disease varies from person to person. Symptoms, severity level, time frames, age, sex, etc. Everything possible.

Personally, I had optic neuritis at age 19 along with a couple of other symptoms I brushed aside as nothing. I went 5 years until some things cropped up again leading to my diagnosis. Who knows whats next as this was less than a year ago.

I was in an "episide" for over 3 months. One symptom after another without fail. I took two steroid treatments and it all finally stopped. Then changed my life ten fold. I quit smoking cigs, really tightened up my diet/nutrition, kept with a strict weight lifting routine, started medication, and adopted a new better positive attitude in life. I got back to feeling better than I ever have in my life but a few symptoms have returned recently for whatever reason. I am just gunna power through them until they stop and i can feel great again. You have to do whatever you can to help your body withstand what it can do and restore it after it strikes.

I hope the best for you,

Chris

rhs1040
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Re: Waiting... waiting... waiting

Post by rhs1040 » Thu Aug 21, 2014 11:13 pm

Appreciate everyone weighing in!

So, neurology appt was today... got copies of the spinal results. Neuro says very little chance of MS due to lack of oligoclonal bands in my CSF. The lab report says that "Approximately 5 percent of patients with clinically definitive multiple sclerosis will have a negative result." To the neurologist, this means MS is off the table for my diagnosis! That being said, my protein CSF was 47 H, which she said was a bit high and suggestive of inflammation - isn't that at the heart of MS?

That being said, when she listened to my symptoms (since I last saw her) and reviewed my MRI report (again), she is still leaving the door a tiny bit open... as the lab results are seeming in contrast to what I'm reporting and the lesions on the brain MRI. She wants me to go see a colleague (MS specialist) at UC Davis for a second opinion. We also pushed for more B12-related testing, which she was resistant to, but finally referred me to the lab again. She also said something like "Devic" or "Divec", or something, as a possibility... but we haven't started looking into that yet. She also said I might just be a "zebra", which she made sound (somewhat condescendingly) as a mystery case. I am definitely most fearful of this scenario, in which I get labeled a faker because they can't identify what's going on.

Anyway, that's the update... for anyone interested! Still no answers, just more waiting and wondering, as usual.

Youarethecure
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Re: Waiting... waiting... waiting

Post by Youarethecure » Sat Aug 23, 2014 9:27 am

Neuromyelitis optica aka devics disease is like a sister disease to MS.

I think if it was that you would have more problems with your eyes and would have suffered from optic neuritis at least once. Plus it manifests with physical issues and lesions on your spine.

You need a new neuro in my opinion. Just because of that spinal tap doesnt mean its "very little chance". At 19 I did not show positive for my spinal tap but 5 years later I had another relapse thus leading to my diagnosis. You could just be in the early "ghost" phase of the disease.

Hopefully its just something simple though like b12 problems.

Either way you need to relax and try not to stress over it. Whatever it is, that will only make it worse.

Keep us posted, I am very intersted in this and hope nothing but the best for you!!

Chris

rhs1040
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Re: Waiting... waiting... waiting

Post by rhs1040 » Sat Aug 30, 2014 3:57 pm

Over the last week, my lower body has been feeling noticeably weak, lots of general soreness even when resting. I thought maybe I overdid it last Saturday when I went for a swim, but I shouldn't be feeling the same one week later!

I have been noticing lots of muscle twitches/spasms in my hamstrings, quads, and calves daily, mostly more intense at the end of the day. It's been taking greater effort to lift my feet, especially left side, when walking... my foot has caught on the ground a lot more often this week than just general clumsiness that I might normally experience. This is worrying me a lot, but I'm also feeling like a hypochondriac as my list of symptoms continues to grow.

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jimmylegs
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Re: Waiting... waiting... waiting

Post by jimmylegs » Sat Aug 30, 2014 8:43 pm

https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

Youarethecure
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Re: Waiting... waiting... waiting

Post by Youarethecure » Wed Sep 03, 2014 11:05 am

Eat a lot of magnesium rich food along with taking magnesium supplements.

Whenever my symptoms bother me ( because of heat, a relapse, pseudo-relapse, etc) cramping is one of the things that comes about. My legs mostly cramp for no reason or if I stretch or do something with them. I also suffer from charlie horses in my calves. This has bothered me my entire life while I am asleep.

Nutrition will never cure ms but it greatly "masks" the symptoms you will have. Or it will lessen the severity level.

If you do a proper diet, nutrition. excercise, and medication you at least know whatever it is you are limiting its severity or slowing down the progression.

THX1138
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Re: Waiting... waiting... waiting

Post by THX1138 » Thu Sep 04, 2014 9:21 am

Magnesium is infinitely more important than most realize.

My most recent experience involving magnesium involved my getting a Mg I.V. that for about a day took me from being hardly able to walk to walking fairly OK. One person on this site has seen the before and after videos that were taken.
http://www.thisisms.com/forum/post227626.html#p227626
Obviously my muscles were working much better after the I.V.
I don't know if the improvement was from the magnesium's effect on my skeletal muscles or smooth muscles (which affect blood flow), or both.


Magnesium: Meet the Most Powerful Relaxation Mineral Available http://drhyman.com/blog/2010/05/20/magn ... ble/#close

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