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Scared of possible MS diagnosis

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Hi everyone,

I don't know if anyone can help me. I badly need a friend and an ear right now.

This past winter I kept getting sinus infections. By mid-February, I found myself at home trapped by all the snow (I'm in Virginia) in a rental house that has had some serious water damage issues (the landlord has gone through several sump pumps in the past year and pipes have burst behind the washer within the wall and nothing was ever done to dry the water except the passing of time). The landlord thinks mold is a myth. Anyway, the more the snow melted, the more water accumulated in the already water-logged crawl space and the sicker I became. Serious sinus issues (including nose bleeds), disorientation and dizziness, shortness of breath, agitation, the worst headaches of my life and severe fatigue. Weight was dropping off of me. Why am I posting all of this here? After several doctor visits (including an ER visit) and blood tests I was scheduled for an MRI and a CT scan and visits with an allergist, a neuro and an ENT.

As suspected, I had serious upper respiratory issues going on. No one seemed to care about the rapid weight loss. My PCP put me on two different rounds of antibiotics. An emergency room doc diagnosed me with migranes (!!!) and prescribed Vicodin (I never got the prescription filled). The ENT had to vaccum out my ears to get rid of excessive fluid and put me on more antibiotics. The allergist confirmed allergies including mold but suggested meds for depression (???) and put me on inhalers and allergy meds. The pulmanologist (breathing) scheduled me for a breathing test, amazed that the allergist didn't do one. Another PCP put me on antifungals and other antihistamines. Lastly, the neuro told me that if the house had that much water damage to (as she put it) "just move" and then added, almost as an afterthought, that the MRI showed a brain lesion in my right forehead and I might have MS -- or maybe not. I sat there, stunned. I was scheduled for evoked potentials and began to learn all I could about MS. I needed to know what it was, what the symptoms were and treatment.

In denial that anything that serious could be wrong (this started as a sinus issue after all and I was pretty healthy up until this winter), I postponed the evoked potentials for a few weeks and instead visited a holistic doctor (who did nothing more than relieve me of $175 for info I could've gotten on the internet).

I continued to get sicker and sicker (more weight loss, dry heaves, serious insomnia and the worst fatigue I've ever felt in my life). Too sick to work or do much more than lay in bed, people urged me to get out of that house. I moved in with friends about a month ago, leaving all of my belongings and pets in the house (it's impossible to move when you're this sick, all alone, on unpaid leave from work and uncertain of when or IF you'll recover) only going back to take care of my diabetic cat and to pack a few things once a day IF I have the energy to drive the 15 miles there.

Almost overnight, illness robbed me of the place I called home for 8 years, my schoolwork (I'm PT student), my income, my job, my animals, my sleep and my sanity. Not only did I not know what was wrong with me medically, I didn't know if I would lose my job, fail my classes and a host of other worries (including being in a wheelchair and/or never being able to work or drive again). I am single and have no family. The stress has been unbearable. I became even sicker. I lost 30 lbs in two months, found myself shaking uncontrollably at times and started exhibiting symptoms that are related to panic attacks but also MS (such as a buzzing feeling in my left anklke and extreme muscle weakness in my whole body -- something I never felt until the "possible" dx of MS).

I was amazed at the support from a lot of my friends but equally amazed at how people I THOUGHT were my friends dropped me like a rock, insinuating I was somehow just "making all of this up" or talking myself into having MS (??) or mistaking panic disorder for MS. One such friend was the guy who promised to drive me to my evoked potentials (60 miles away) on April 9th. I had to reschedule for the 21st of this month and found someone else for transportation. I applied for short term disability with my job. By the morning of the 21st, I literally hadn't slept for days and was up all night before the appt (they can only do the tests at 8am 60 miles away and that meant being up at 5am). Shaking uncontrollably, with serious muscle and joint pain and throwing up, terrified they were going to give me neuro tests at a time when I was absolutely a wreck and misdiagnose me, I rescheduled the tests -- and have been kicking myself ever since. It turns out they only do one test on one patient each day and only at 8am -- which means my appointment is not until May 10th and the chances of my getting in sooner are slim to none.

I've looked up so much info on MS and read how people have had "episodes" of numbness, or vision issues or dizziness, then years later find out it's MS. I've never had any previous issues and wonder if I am literally making myself crazy since I never had any MS symptoms until I was told I maybe have it. I've seen posts (even on this board) how some people choose to forego meds or not tell their employers, etc. HOW can that be? I haven't been able to function for over two months. I finally got a mold air test of the house (the landlord refused to do it). The bedroom (where I worked from at home and of course slept and spent most of my time) showed significant toxic mold issues (four different types to be exact). My constant searching of the internet shows my symptoms to be consistent with mold poisoning and MS and ..well, a host of other illnesses. Sometimes I want it to be MS just so they can give me something for it.

I am moving completely (pets and all) with friends within the month so I can recover financially and hopefully medically (and the thinking that if it IS mold poisoning I'll be out of the house - I'm not even taking any furniture or other stuff that may be contaminated). At this point, however, I no longer believe I will ever feel okay again. I've been sick for so long I don't remember being well.

My muscles are like lead. I can't sleep. When I do sleep, I wake up exhausted. At times I am too weak to hold the phone up to my ear or even walk out to the porch. Up until January, I had a ton of energy and was a regular gym-goer. Now, at times I feel like I'm dying. I'm that sick. My entire body feels the way you feel after a car accident. My lower back aches. My joints ache. I'm getting hot flashes and chills. My heart will race and breathing is difficult. I literally feel like I have a terminal disease. Then the buzzing will start in my left ankle. Recently doctors told me I may have mold poisoning or MS or maybe both. !!!!!!!! I would think being out of that house (even though I go back each day) would've shown me some improvement. And I didn't think MS came on one day out of the blue like this. Has this happened to anyone else?

Still undiagnosed with anything, my whole life has been taken away from me -- except I'm still alive -- and I'm starting to even feel bad about that (yes, at this point, I'm very depressed). Almost every MS video on YouTube talks about the unbearable pain and torture of MS. Montel Williams likens it to being burned with metal rods. All I see are people in wheelchairs. I feel so horrible already, more suffering is what I have ahead of me?

My doctor listed my return to work date (for my disability forms) for May 15 - pretty optimistic since my evoked potentials aren't until May 10th (although, of course, they were supposed to be earlier). How long does it take to get evoked potential results back? If I have a lesion and fail one or more of the evoked potentials (which I most likely will if I am so stressed, have no sleep and 60 miles to get there at 8am), is that an immediate diagnosis of MS? Some people seem to find out immediately and other people say they had to wait for specific episodes of flare ups before they are diagnosed. What is an episode? I have had no relief in over two months. I would think an episode would be something that shows up and then goes away. Me on the other hand? I feel like I've been poisoned and every day is something I try to get through.

I'm afraid of being diagnosed with MS. I'm afraid of being misdiagnosed and given meds I don't need. I'm afraid of being diagnosed with nothing and left to suffer even longer with no diagnosis of anything (you'd think in this time I'm waiting they'd at least test me for diseases similar to MS). I am so scared and very depressed and ...the end of my rope was well over a month ago. I was a relatively happy healthy person before and now I'm searching for reasons to live.

I'm so sorry for the long post. This is the first time in a long while I've even been okay enough to sit up in front of the computer.
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replied May 1st, 2010
Community Volunteer
First and foremost, take in a deep breath and slowly release.

By worrying or not will not change the course. To me it sounds like it could possibly be mold. Note that people who experience migraines can have lesions on the brain, nothing major, just happens.

Evoked test...nothing to worry about...it's not like a lie detector...a person can not fail or pass...it is a test that measures certain things that the doctor needs to confirm or rule out or possible watch for...

By overthinking what it could or could not be or if you could be misdx'd or wait years for a confirmation or taking meds that you may or may not need...you are working yourself into a frenzy and if you go to the doctor that way you could be mislabeled.

Best advise I can give. Move if you can, be tested for mold toxicity, get your evokes done and don't worry about anything else. What happens will happen and if it turns out it is MS, take in another deep breath, it is managable and is not a death sentence.

Best Wishes,

Zig
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replied May 1st, 2010
MS
Kendra,
I read your post because I too have suddenly been having sinus infections, fatigue, stomach problems, and tremors. I too have had multiple tests that come back with no answers. Just had a MRI to test for MS or other problems. Don''t get to see a Neurologist until May 13, 2010. So I share your frustration and fear. By the way I am a 51 year old female.

However, I want to give you a little hope. Being the daughter of a Mother who was diagnosed with MS at age 29, I know quite a bit about MS. Not everyone experiences the same symptoms and not all days are unbearable. My Mother had the relapsing/remitting form of MS so there were times that she was not in pain or miserable. In addition, with the new medications that are available to reduce inflammations and length of attacks my Mother''s life was better.

I hope you get answers soon and I hope that all will be well. Even if you are not a religious person, I will be praying for you. If you are religious, I hope you will pray for me too. Just spilling my feelings to you has helped. Hope I can help you.
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Users who thank shannon90 for this post: zigemyster 

replied May 2nd, 2010
Thank you again all. The most frustrating part of this is that doctors don''t seem to be doing anything to rule out anything else. It''s like they''re suspecting MS but haven''t discussed anything else. That scares me a LOT (not just for diagnosis but misdiagnosis). A friend is taking me to my PCP tomorrow to find out what blood testing I have had done (I don''t know since I''ve been so sick) and what has or hasn''t already been ruled out. All I want to do is go back to work and get on with my life.
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replied May 2nd, 2010
Kendra,
I got very sick, something like what you're describing, nearly 20 years ago. Went through a lot of testing including MRI and spinal tap. Was diagnosed with having MS. According to neurologist, and results of MRI, I didn't just get MS, I had it for many years, which he estimated @20 yrs of age or so. When I was this sick and being tested, I was in the middle of a very hard MS Attack, which lasted for a couple of months. I'm 62 years old, been in remission for 20 years (since all that), work and function pretty darn well. I do experience fatigue, and extreme at times, so I just listen to my body, and rest when needed. And, stress will also put me down! So, as much as possible, I try to avoid it! Just trying to tell you kiddo, that you may feel better when you are finally diagnosed with "whatever"... It's the unknowing that's scarier than dealing with the certain. And, whatever you may have, become as educated as possible about condition. We must be our own advocates when it come to health conditions.
I hope you're better very soon. Keep the faith and when saying your prayers, include yourself~it's really okay to do this...
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replied May 2nd, 2010
I keep reading about remission. I''m not sure what it is. I mean, do you keep taking all of your meds during that time? And if so, how do you know you''re in remission? Whatever it is, I''m terrified I''m going to feel this bad forever, will never work, will never have relationships, will never leave the house. Like this is the end of my life even though I''m still alive. And I don''t even know what it is yet.
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replied May 2nd, 2010
Community Volunteer
Again, take in a deep breath and slowly release, repeat several times. Stress can trigger an MS attack...not saying that you have it but just as an FYI.

To answer your question regarding taking meds when you are in remission...yes meds are to be continued. Basically remission means that the disease / symptoms have calmed down and you proceed to live your life as normal as can be.

I was dx'd with MS mid 30's and looking back I had various symptoms dating back to my early 20's...I'm now in my mid 40's. During this time span I have lived my life, my children are now grown and I continue to work full-time and know what triggers my symptoms to reappear...some being stress, lack of sleep, extreme heat or cold.

When you figure out what works for you and what triggers you need to stay away...adapt and move forward.

Like I said earlier it is not a death sentence...it's just another chapter in your life. Don't decide that you have something that might not be.

Keep a journal of what you are experiencing and present it to your doctor(s) during your next visit.

Best Wishes,

Zig
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replied May 8th, 2010
Some people talk about having MS and going on with life as always (albeit with a few issues with MS). Other people talk about it being debilitating including wheelchair confinement and blindness. Then I've read how the meds make you more depressed and physically can make you feel worse.

So many articles say to have family help in times of MS fatigue and flare ups. I am single. No family of my own and no family period. If it turns out I have MS, that's stress upon the stress I already have (being alone and trying to keep your head above water is ... overwhelming at times). And if I've been this sick for the past two months (unable to work or do much of anything) and it's going to get worse? That's what terrifies me. I don't see how in the world I would ever survive.

My evoked potentials tests are this Monday. The neuro very much made it seem as if it''s pass or fail. Any idea how long it takes to get those results back? I feel as if I am an animal going to slaughter instead of a person being evaluated.
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replied November 21st, 2010
waiting for diagnosis, MS, Mould, Lyme maybe all three
Kendra,

My sympathies to you, I am also in mid test for diagnosis, and so far have been unable to even secure an appointment with a neurologist.
Remember that we are all mortal, and too much worry about the future robs us of the happiness of the moment. Understandably without diagnosis the internet is a source of both worry and comfort, try and keep it all in perspective. Look for the little bit of wonderful in each day, it's what I do, and it helps.
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replied February 29th, 2012
Almost 2 years later: Kendra, how are you doing? I am going through something similar to you but I'm trying to stay as stress free as possible because I've learned over the years what stress can do to you internally. I wanted to know how you are doing and what became of your testing and results?
Tracey
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replied March 23rd, 2014
Possible MS??
Hi all,
I too am in mid dx, waiting to find out what the outcome will be, i am a little different in that I was initially dx with graves disease, had the radioactive iodine treatment, then went to hypothyroid instead of hyper, which brought on similar symptoms (so I am told) of MS, ended up in Hospital even, these were my symptoms according to Hospital report. (mind you I was told to get to the Hospital asap as my GP suspected a stroke at the time): 3 week history of generalised malaise, lethargy, and bifrontal headache associated with 2-3 week history of left facial droop, right arm weakness and clumsiness and dysarthria. Found to be hypothyroid following a recent radioiodine ablation therapy.
At the hospital they began to treat my hypothyroid with thyroxine (spell check) high dose and alot of the symptoms have subsided a little, note, a very little.
At the hospital I was given a CT scan, a MRI scan and a spinal tap with the following results:
Best appreciated on the FLAIR sequence, there is periventricular high signal seen together with scattered foci of high signal within the deep white matter seen in a pericallosal distribution. This is more pronounced than what would be expected for a patient of stated age of 43 yrs
conclusion:
Best appreciated on the sagittal FLAIR, there are multiple T2 hyperintensities seen at the collosal septal interface with a perpendicular orientation. These do not demonstrate significant enhancement. the main differential for this would be that of demyelination. Progress imaging is recommended.
MRI suggestive of idiopathic demyelination but no active lesions, further invstigation once hypothyroidism resolved.

soo, my neuro believes that some of my symptoms have nothing to do with the hypothyroid but wants to rule out other things, says she is leaning tward MS but will not give me a definitive dx till I go for more tests. Am due for another CT angiogram (spell check) of the Circle of Willis to rule out other things (not sure what that is) and did some more blood tests.

I would like also to know how your tests went and how you are doing, I can understand the stress of the situation as I have had to take plenty of time off work, (used up all my sick leave and annual leave, now am living off of savings) My partner is not working and I was the only money maker, so far my job is safe due to my Union who is making sure of that till I know what is going on.

Also I was wondering from others if my test results above sound like MS, as my neuro suspects it is?

be well, stay positive
Lee (f 43yrs old)
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