Process of being diagnosed?
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TriPony
Posts: 11
Hey everyone. Was hoping for some support here. The past six months have been quite a whirlwind for me health wise and I was hoping to connect with others going through (or been though) this process.
It's not official that I have MS yet - I'm still being sent for a ton of tests, but my doctors agree something is seriously wrong and I'm scared. How long did it take for you to get diagnosed? What were your early symptoms that led you to the dr office? I just really want an answer to why I feel so crummy.
It all started late this summer when I started getting terrible daily headaches that progressed to a migraine 2-3 times a week. Saw my primary care who gave me a PRN med (RelPax) and referred me to a neurologist that specializes in migraines but she didn't have an opening until October. In between me seeing my primary care & the neurologist I started getting weird sensations in my hands and toes: tingling, occasional numbness, and burning feeling. I freaked out (thinking I had some brain tumor or whatever) and went to see another neurologist who did a MRI of my brain (clean) and put me on daily Topomax for the migraines. I wasn't too impressed with this neurologist since he offered no insight to the tingling so I kept my other appointment with the one my primary care wanted me to see as a second opinion. The Topomax helped the headache issue but increased the tingling sensations to almost daily. Somewhere in here (before starting the new meds) I also started feeling sluggish and getting terrible joint pain. I almost passed out one night & ended up in the ER. They ran a ton of blood work, most of it was OK, but I have a positive ANA and my WBC & sed rates were a little high. They told me to see a rheumatologist. He was thinking possibly lupus or RA but no skin rash or other anti-dna strain antibodies came back for any autoimmune disease. (I'm also negative for lyme & some other tick borne thing).
So my appointment finally came for my 2nd neurologist in Oct and after my exam I'm apparently losing sensation below the waist and my hip flexors are weak. It was so subtle I didn't even notice it. She sent me for MRIs with & without contrast of my spine & brain - all clean, no lesions or slipped discs, or clots. Went for my follow up last week and my legs are getting worse. They feel "heavy" after minimal exertion and sometimes my left knee gives out. My peripheral nerves are so shot that I cut myself and didn't even realize it until I saw blood all over the place. Still get tingling in toes/fingers (not constant) and when I sit for too long my feet go numb. I have to pee a lot too (neg for diabetes) but I also drink like a gallon of water a day - so that may not be related. Anyway she ordered two more tests to check my nerves. I just did the SSEP this morning and I have a EMG scheduled for Monday. The people at the hospital that did the SSEP asked about my symptoms and kept asking if I had a spinal tap done yet (no) and if MS ran in my family. From what I read on line the SSEP test is suppose to be quite painful, but while it was uncomfortable and I felt a few sharp jolts from the stimulator thingy, I was never on the verge of tears or anything. They couldn't give me my results today - I have to call my dr next week, but the nurses where whispering a bunch and I'm paranoid that something was wrong.
I wear glasses but haven't had any abnormal vision issues which usually seems to be an indicator of MS. I'm still in a lot of pain with my joints and back, and I keep dropping stuff accidently. But that's it. Is this the normal start to MS? I feel like when I read about how people got diagnosed its cuz they woke up blind one day or couldn't feel their hand/foot/leg for more then 24hrs straight. My tingling only comes and goes. Can you have MS with no lesions on CNS? As of now my neurologist is ruling it neuropathy NOS but has mentioned that MS can take a while to officially diagnose because I need to have two confirmed "flares". I guess she's just trying to "confirm" this as the first flare?
Frustrated
It's not official that I have MS yet - I'm still being sent for a ton of tests, but my doctors agree something is seriously wrong and I'm scared. How long did it take for you to get diagnosed? What were your early symptoms that led you to the dr office? I just really want an answer to why I feel so crummy.
It all started late this summer when I started getting terrible daily headaches that progressed to a migraine 2-3 times a week. Saw my primary care who gave me a PRN med (RelPax) and referred me to a neurologist that specializes in migraines but she didn't have an opening until October. In between me seeing my primary care & the neurologist I started getting weird sensations in my hands and toes: tingling, occasional numbness, and burning feeling. I freaked out (thinking I had some brain tumor or whatever) and went to see another neurologist who did a MRI of my brain (clean) and put me on daily Topomax for the migraines. I wasn't too impressed with this neurologist since he offered no insight to the tingling so I kept my other appointment with the one my primary care wanted me to see as a second opinion. The Topomax helped the headache issue but increased the tingling sensations to almost daily. Somewhere in here (before starting the new meds) I also started feeling sluggish and getting terrible joint pain. I almost passed out one night & ended up in the ER. They ran a ton of blood work, most of it was OK, but I have a positive ANA and my WBC & sed rates were a little high. They told me to see a rheumatologist. He was thinking possibly lupus or RA but no skin rash or other anti-dna strain antibodies came back for any autoimmune disease. (I'm also negative for lyme & some other tick borne thing).
So my appointment finally came for my 2nd neurologist in Oct and after my exam I'm apparently losing sensation below the waist and my hip flexors are weak. It was so subtle I didn't even notice it. She sent me for MRIs with & without contrast of my spine & brain - all clean, no lesions or slipped discs, or clots. Went for my follow up last week and my legs are getting worse. They feel "heavy" after minimal exertion and sometimes my left knee gives out. My peripheral nerves are so shot that I cut myself and didn't even realize it until I saw blood all over the place. Still get tingling in toes/fingers (not constant) and when I sit for too long my feet go numb. I have to pee a lot too (neg for diabetes) but I also drink like a gallon of water a day - so that may not be related. Anyway she ordered two more tests to check my nerves. I just did the SSEP this morning and I have a EMG scheduled for Monday. The people at the hospital that did the SSEP asked about my symptoms and kept asking if I had a spinal tap done yet (no) and if MS ran in my family. From what I read on line the SSEP test is suppose to be quite painful, but while it was uncomfortable and I felt a few sharp jolts from the stimulator thingy, I was never on the verge of tears or anything. They couldn't give me my results today - I have to call my dr next week, but the nurses where whispering a bunch and I'm paranoid that something was wrong.
I wear glasses but haven't had any abnormal vision issues which usually seems to be an indicator of MS. I'm still in a lot of pain with my joints and back, and I keep dropping stuff accidently. But that's it. Is this the normal start to MS? I feel like when I read about how people got diagnosed its cuz they woke up blind one day or couldn't feel their hand/foot/leg for more then 24hrs straight. My tingling only comes and goes. Can you have MS with no lesions on CNS? As of now my neurologist is ruling it neuropathy NOS but has mentioned that MS can take a while to officially diagnose because I need to have two confirmed "flares". I guess she's just trying to "confirm" this as the first flare?
Frustrated
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Replies
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I'm so sorry you're going through this now. Not knowing what is wrong is scary and stressful. If you can, try to stay off google until you have a diagnosis. As you already know, MS is very hard to diagnose, even today with MRI.
To answer one of your questions, yes, it's possible to have MS with no lesions showing up on MRI (I'm drawing on a study I read about 15 years ago. so maybe things are different with better tools today). What I do know is diagnosis is still a process of elimination ... test for everything else and if still left with no cause, then, boom, it's MS. In the old days, they used to put folks with suspected MS in a hot tub to see what would happen. If the person's symptoms got worse, it would be an indicator. Pretty barbaric, huh?
My own diagnosis took 4 months. I was "lucky" and had 2 distinct episodes during that time. I also had a whopping big lesion on my spinal cord. I had/have a lot of symptoms, so there's no one thing that points to my disease. I do know I had it long before I got my dx though, so finding out what was "wrong with me" was a relief rather than a burden.
Hang in there and try not to worry. Do the things you can do to make yourself feel better. Whatever is wrong will be helped with good nutrition, rest, fresh air and exercise if you can manage it.
Sue0 -
Hi, I agree with Sue about staying off Google for the time being - remember just because it is on the internet doesn't make it real. If you absolutely have to read about ms and see some q & a from actual patients and those that are just being diagnosed - then go to the mssociety website. There is one in Canada and the USA and I believe other countries as well. I find mssociety.ca very helpful when something new and 'wonderful' crops up.
I was one of those "woke up and couldn't see" individuals and that pushed my diagnosis pretty quickly. Hit the doctors office Feb 2/08 - had tests - saw more docs - had more tests, CT Scan, MRI - saw neurologist all before March 12/08. At that point I had a probable dx but in Alberta a definitive dx has to go to a committee made up of ms specialities who look at everything and rule out everything else before they agree and put you on the meds. I started my first MS med in Oct/08.
Having said all of that - after many more visits and histories with my neuro it turns out I've probably had MS since the 1980s. I used to find that the ability to lift things or open doors would just dissapear. I'd go from fine and healthy to using the handicapped entrance at work because I couldn't get the main doors open, holding a coffee cup required a two handed grip, and lifting a pot empty or full off the stove would become my husband's job. And then ----it would all just go away after a week or two and then I'd be fine. At that point all the docs could come up with was carpal tunnel - but they couldn't find any nerve damage. An old roommate had Lupus so I learned alot about dealing with things and moving on. I didn't worry too much about it until the vision problems.
I will admit that actually knowing what the problem is is a great relief.
I have a few clients with MS and a least one of them started the way you are - but MS is as individual as each and every person who has it. It wall depends on where the disease strikes and most importantly how you react to it. You have to start this whole process with a positive attitude and refuse to let the disease take over - I have MS it does not have me.0 -
Not sure if anyone is following this topic still but I am having a similar "process". In Dec '10 I had a little tingling in my right foot, drove to the doctor in the morning to get checked out, by that evening I was paralized on my right side from just below my ribs down and couldn't stand/walk. I had an abnormal SSEP, normal spinal tap, normal MRI's (top to bottom). First neuro told me I was faking, his associate took over my case because he didn't agree, ran the SSEP and said there was no way to fake the outcome of that. Long story short, I've been in limbo for a diagnosis for over 2 years, progressing from a wheel chair to a walker to a cane in that time. MRI's still don't show lesions but I've started having bladder and bowel symptoms (new), babinski and clonus reflexes in my right foot (documented by neuro), and right leg feels like cement (neuro documented as spasticity) . I don't go back to my neuro for about 6 mos but I'm keeping a log of everything that happens...date, symptom, pain level 1-10, fatigue, anything out of the ordinary. Everything else has been ruled out except MS but here in the US there are very specific diagnostic regulations. I figure the details in my log will be important to help with that diagnosis. In the meantime--
Don't fret the small stuff
Keep yourself healthy
Know you aren't alone0 -
Hi, I'm still monitoring. I am glad you are documenting things because they will make a difference in the end. I'm glad you have at least one neuro who believes you. I'm not sure where some of these docs get their licence - if they didn't want to have to deal with real live people maybe they should have gone the research route?
Take care of yourself.
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Thanks Benji49. I was really angry and hurt when the first neuro said I was faking then just walked out of my hospital room. I cried for days until second neuro ran the SSEP and said the test confirmed something physical was wrong. I'm emotionaly over it now (2yrs later) but anytime I hear someone mention the first neuro's name I tell them to "run". Really sucks to know there are such bad doctors out there working on people in vulnerable positions though.0
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I agree - and how many people believe that they are imagining things and never go back for more tests. A lot of unnecessary pain and health problems that could have been dealt with earlier.
There are really terrific docs out there - you just have to be diligent until you find one.0
