[vs1988]

I'm a 25 year old male, and I've had signs and symptoms for about ten years which seem to be consistent with relapsing-remitting MS, but have not been able to get a diagnosis or appropriate testing.

My first symptoms started around age 15. I developed muscle twitching, loss of balance/coordination, weakness, and fatigue and was referred to a neurologist by my PCP for a neurological work-up. THe neurologist ordered an EMG which came back negative. This cluster of symptoms would wax and wane over the course of months to this present day. At age 18 I experienced my first and only visual symptom. While doing homework in my dorm room at college I lost vision in my left eye and could only see a "kaleidoscope" pattern in the middle; the outer field of vision went completely black. I was taken to the ER and they did a CAT scan, which was negative. Doctor diagnosed me with a migraine and sent me home with no follow-up. Eventually my vision returned over the next couple of days. My next major episode was at age 24 last October, when I experienced a gradual onset of vertigo and loss of balance. It peaked over several days and got to the point that I couldn't focus on moving objects or hold myself steady. I went to the ER, and they ran a complete blood count and electrolyte panel. All tests came back normal, and doctor said it was probably stress and sent me on my way. Eventually the symptoms subsided after about two weeks. September of this year, I developed right sided weakness in my arm and leg. The leg weakness is not as pronounced other than feeling wobbly and slightly off while walking. The arm weakness is more obvious--I'm having a hard time opening jars, turning my car keys, buttoning my shirt, etc. This weakness/lack of coordination developed slowly over a course of weeks and hasn't subsided.

Throughout the past ten years that I've been having these strange symptoms, the two big things that led me to suspect MS was the visual disturbance/vision loss, which I understand is a major MS symptom, and the fact that these symptoms come and go in episodes that last for days to weeks. In between the major episodes I described above, I also have "good days" and "bad days" as far as fatigue/overall weakness; on my bad days I'll feel like I've just run a marathon and can barely scrape myself out of bed despite having gotten a good night's sleep. The fatigue episodes cycle more quickly than the major neurological ones.

I've spoken with my PCP about this at length, and she dismissed it as migraines/stress/anxiety and wouldn't refer me to a neurologist. Unfortunately my insurance plan requires referrals to specialists or they will not cover. At this point I'm willing to pay out of pocket just to see a neurologist and get tested. To make things more complicated, I have a suspicion that these symptoms might also be the result of long-term Lyme Disease. I grew up in a rural/wooded area in Connecticut where LD was widespread. As part of the work-up early on for these symptoms my PCP had me tested for LD; the ELISA came back positive but the Western Blot negative. I understand, however, that LD tests are notoriously inaccurate and that chronic LD can mimic MS.

For those who were diagnosed, what tests did you have done/requested? How long from symptom onset until you were finally diagnosed with MS? Just wanted to get some overall advice/support on how to handle this. Thank you.

[vs1988]

Originally Posted by vs1988

I'm a 25 year old male, and I've had signs and symptoms for about ten years which seem to be consistent with relapsing-remitting MS, but have not been able to get a diagnosis or appropriate testing.

My first symptoms started around age 15. I developed muscle twitching, loss of balance/coordination, weakness, and fatigue and was referred to a neurologist by my PCP for a neurological work-up. THe neurologist ordered an EMG which came back negative. This cluster of symptoms would wax and wane over the course of months to this present day. At age 18 I experienced my first and only visual symptom. While doing homework in my dorm room at college I lost vision in my left eye and could only see a "kaleidoscope" pattern in the middle; the outer field of vision went completely black. I was taken to the ER and they did a CAT scan, which was negative. Doctor diagnosed me with a migraine and sent me home with no follow-up. Eventually my vision returned over the next couple of days. My next major episode was at age 24 last October, when I experienced a gradual onset of vertigo and loss of balance. It peaked over several days and got to the point that I couldn't focus on moving objects or hold myself steady. I went to the ER, and they ran a complete blood count and electrolyte panel. All tests came back normal, and doctor said it was probably stress and sent me on my way. Eventually the symptoms subsided after about two weeks. September of this year, I developed right sided weakness in my arm and leg. The leg weakness is not as pronounced other than feeling wobbly and slightly off while walking. The arm weakness is more obvious--I'm having a hard time opening jars, turning my car keys, buttoning my shirt, etc. This weakness/lack of coordination developed slowly over a course of weeks and hasn't subsided.

Throughout the past ten years that I've been having these strange symptoms, the two big things that led me to suspect MS was the visual disturbance/vision loss, which I understand is a major MS symptom, and the fact that these symptoms come and go in episodes that last for days to weeks. In between the major episodes I described above, I also have "good days" and "bad days" as far as fatigue/overall weakness; on my bad days I'll feel like I've just run a marathon and can barely scrape myself out of bed despite having gotten a good night's sleep. The fatigue episodes cycle more quickly than the major neurological ones.

I've spoken with my PCP about this at length, and she dismissed it as migraines/stress/anxiety and wouldn't refer me to a neurologist. Unfortunately my insurance plan requires referrals to specialists or they will not cover. At this point I'm willing to pay out of pocket just to see a neurologist and get tested. To make things more complicated, I have a suspicion that these symptoms might also be the result of long-term Lyme Disease. I grew up in a rural/wooded area in Connecticut where LD was widespread. As part of the work-up early on for these symptoms my PCP had me tested for LD; the ELISA came back positive but the Western Blot negative. I understand, however, that LD tests are notoriously inaccurate and that chronic LD can mimic MS.

For those who were diagnosed, what tests did you have done/requested? How long from symptom onset until you were finally diagnosed with MS? Just wanted to get some overall advice/support on how to handle this. Thank you.

I should also add that I get episodes of severe brain fog, sometimes accompanied by slurred speech, and inability to find words. These usually occur on the "bad days" with the fatigue and weakness.

[weetagirlywirly]

Originally Posted by vs1988

I should also add that I get episodes of severe brain fog, sometimes accompanied by slurred speech, and inability to find words. These usually occur on the "bad days" with the fatigue and weakness.

I read your posts and everything you said was described so well, it was as if you described my story. I'm sorry that you are going through this and doctors just don't seem interested in getting you the help you need.
The way you described your symptoms onset etc is the same as what has been going on with me too.
It is sad to hear that your doctor dismissed you and blamed it on " stress" .
Really? Why do so many of us get that as being our problem.
I am undiagnosed still and hanging in limbo land too. I am new to this board and have only posted on here once before. Reading these posts on here at least help me know that I am not alone in this journey.
I hope you find a doctor that will hear you and take you seriously. Good luck and keep us posted.

[rockinreel]

I'm not diagnosed with MS but something is slowly damaging my nerves. The doc suspects MS and I have taken these tests so far to specifically determine if I have MS:
1. Brain MRI (3 of them, all positive with lesions)
2. EMG
3. Evoked Potentials (test nerve path from toes, up spine, to head (and hearing)
4. Cervical MRI (looking for lesions of the CNS)
5. Lumbar Puncture
6. Extensive blood tests


I'll have to request for a Western Blot. Glad I read your post. (I started a post called "are these ms symptoms".

[karilann]

You need an MRI. To diagnose MS, you need an MRI with lesions showing consistent with MS. (other things can cause lesions)

You need symptoms separated by time and space (you have had that)

You need tests to rule out other causes (B12 deficiency, Lyme's etc.)

Sometimes they will do a spinal tap to check for proteins in the spinal fluid.

Evoked potentials may be done also to see how you stack up.

I think its HORRIBLE that your doc did not let you see a Neuro. You may need another doc! MS needs immediate intervention and you are not getting any facts from your doc. Stress is not a diagnosis in a "healthy" young person.

Perhaps you do not have MS......but I read nothing in your post that proved that. They need to seriously look for MS and things that mimic MS.

[ewizabeth]

I agree with everything that Karilann said. It is shameful that they keep brushing off your symptoms. I hope that you will be able to see a neurologist soon.

Originally Posted by karilann

You need an MRI. To diagnose MS, you need an MRI with lesions showing consistent with MS. (other things can cause lesions)

You need symptoms separated by time and space (you have had that)

You need tests to rule out other causes (B12 deficiency, Lyme's etc.)

Sometimes they will do a spinal tap to check for proteins in the spinal fluid.

Evoked potentials may be done also to see how you stack up.

I think its HORRIBLE that your doc did not let you see a Neuro. You may need another doc! MS needs immediate intervention and you are not getting any facts from your doc. Stress is not a diagnosis in a "healthy" young person.

Perhaps you do not have MS......but I read nothing in your post that proved that. They need to seriously look for MS and things that mimic MS.

[Mariel]

I don't know if some insurances are rationing visits to specialists. It's a crying shame, if so. You need a neurologist or at least someone who can read MRI's. A few pcp's can do this. But not all.
I guess no one has an answer for my periventricular question. It seems anyone reading this has not been told lesions must be periventricular for diagnosis. That could just be a ludicrous myth which an early neurologist told me, early in my own dx. That's one problem you will face if you DO get a neurologist, that they have disagreements and they are not all equal in skill.

[SallyC]

Welcome VS, nice to meet you. I don't know why some Neuros take
soooo long in DXing or ruling out, MS and some do it more quickly?
It is true that in the early cases of MS, it doesn't show up on MRIs
and LPs, but eventually does.

Some Neuros/Docs also like to DX you with a case of anxiety/stress,
if they don't see anything on the tests. A nice way of saying, "it's
all in your head.... I'd love to tell that Doc, "It's obviously neuro
-logical, so of course it's all in my head and spine, you just haven't
found it yet".

Go to an MS specialist Doc/Clinic and Get a 2nd opinion!! Let us
know how it goes for you.

[NurseNancy]

hello and welcome to NT,
as i've stated many times, one of my pet peeves is for a dr to tell a patient that their problem is due to stress and/or hormones. that's a cop out to me.
if your dr can't delineate the problem when your sx's are so ongoing and obviously not normal then she/he should step aside and at least let you see a specialist.

before telling you to get another dr i wonder what would happen if you insisted you wanted a referral. could you bring an advocate such as a friend or family member to the appt?

another thing i know is that an opthamologist can see eye changes indicative of MS and they have the authority to order mri's. the next time you have vision changes that might be an option. seeing an MS opthamologist may be more helpful.

when my sx's first appeared (gait problems) i had a neuro exam and brain with c-spine and t-spine mri's that showed lesions. it was done with and without contrast by a radiologist, and under floroscopy. i was dx'd based on that but later had a LP which showed O-bands which sealed the dx for my dr (an MS neurologist).

i know this is hard but don't give up. start to keep a sx (symptom) journal with dates and sx's. and, as you have tests get copies of the results. starting a medical file on yourself will be helpful for any other drs you see.

keep us posted.

[jprinz99]

I would tell your PCP (bring along a trusted advocate like family or dear friend) you expect a referral to neurologist.

Failing that solution, I would simply find a new primary care doc. Look for one highly recommended by people you trust - a doctor who listens, keeps an open mind and keeps current on the latest findings, and is not challenged by not being able to diagnose or "fix" your medical issues.

Good luck and I hope you find the answer and solution to what ails you - regardless of the diagnosis.