Newly diagnosed with MS

[RyGuy84]

Hey all, I never thought I would be seeking the support of others since I am in the medical field usually helping others... In February I woke up dizzy and stumbling to the right side, I thought maybe I was coming down with something and slept most of the afternoon. Two days later I saw my PCP who felt it was vertigo. After three weeks of physical therapy and lack of progress I had an MRI done, long story short it took three months for a diagnosis of MS, which i received just two days ago. Over the past three months I have experienced the following symptoms; dizziness, weakness to my right arm and leg, slurred speech, light headedness, and recently ringing in my right ear. I did the high dose steroids for 5 days but still experience all of the previous symptoms of varying severity, some days are just better than others. The neurologist I saw says that my MS is mild and doesn't even think I need meds at this point. I have a good amount of support at home. However, I don't know anyone in my family with MS and am struggling with my physically demanding career. My concerns are probably like many others in the ms world. Tips or positivity are more than welcome

[cleobear72]

Hello RyGuy84 and welcome. I'm sorry for the reason you are here but you are with people who can understand all that you are going through. This is a safe place to ask questions, get advice and just vent when you are frustrated. I wish you luck RyGuy!

[dizzymg]

How did they diagnose you?

Hey I have similar symptoms. I woke up one day dizzy, slept half day. And in 15 days later I have been dizzy for 3 months now. I do have ringing in ears, some tingling and numbness in left leg and arm and sometimes face. I did brain MRI and it came back normal. I am trying to find out what I can convince my neurologist next? Spine MRI or LP. If you have lesions, where do you have them/ brain or spine?

[KateA2]

Hi RyGuy, sorry for the reason you're here--but this is a great place for good info and understanding.

I am not in the medical field, and have only been diagnosed 5 years...but IHMO slurring, motor involvement/weakness absolutely should be treated with medication. Meds can help reduce attacks, and severity of attacks. I look at it as preserving as much as possible, for as long as possible. Of course everyone has different risk-aversion and lots of choices. Just my 2- cents.

[hunterd]

HELLO RYAN, WELCOME TO MS WORLD! take some time and look around at everything the site has to offer. Also, we feature a chat room that is open 24/7, here is a direct link to the schedule http://www.msworld.org/community/cha...hat-room-info/
there is a scheduled chatevery day from 8 PM until 9 PM Eastern. We would love to see you there. Meanwhile, ask all of the questions you think of here, our members are supportive and are quick to offer suggestions to issues they may have experience with. Good luck!

[jreagan70]

The neurologist I saw says that my MS is mild and doesn't even think I need meds at this point.

Run (while you still can), don't walk, to a neurologist who specializes in MS. Seriously, you have dizziness, light headedness, weakness to both an arm and a leg, and slurred speech, and your neuro says your MS is mild?

For that to be the situation, you already have several lesions in critical areas. By the time your neuro thinks your MS is "bad enough" for you to start a disease-modifying medication, you will already have incurred irreversible nerve damage and it will be too late. Even if you choose to call your MS "mild" now, MS is only mild until it isn't.

MS disease-modifying medications have been around for 15 to 20 years now (albeit, the early ones now have the lowest efficacy rate of all of the meds now available), and research has shown that, the early a medication is started, the better the outcome over time. There will never be a better time than now -- at your minimal level of never damage -- to start a disease-modifying medication that can slow the rate of progression. There are no guarantees, but the odds are much better if you're on a med than if you aren't.

Now, you might decide that you don't want to take a med, or might try one and not like the side effects of the meds you try, and choose not to take one. That's fine if you make a conscious, properly informed choice. But for a medical practitioner to misrepresent the state of MS research by not giving you full information is not acceptable. I can't even imagine that a neurologist with any real education and experience with MS would ever say that to a patient.

You deserve to be evaluated and treated by a neurologist who is current in MS research and treatment. You can find a neurologist who is savvy about MS by:

1. Going to the neurology department of the teaching hospital/clinic at a university medical center (many have MS departments)
2. Going to the website of the Consortium of Multiple Sclerosis Centers an searching to see if there's an affiliated clinic in your area (www.mscare.org > Directories > MS Centers, then fill in your location)
3. Contacting your local chapter of the National Multiple Sclerosis Society and asking for their list of neurologists (those are just names and not recommendations and, by some online reports, some of them are duds, but better than just going to the general neurologist who's on your insurance list)

You can keep going to a neurologist who tells you what you want to hear, or you can get another opinion by a neuro who has a better grasp of the disease you're facing. A lot of the MS veterans here would urge you to do the latter. There will never be a better time for you than now.

[Kimba22]

Hi RyGuy84,

Welcome to MSWorld and so glad you found us! I agree with jreagan, find another neurologist!

Here's another link for you http://www.nationalmssociety.org/Tre...ers-in-MS-Care

Best of luck.

[RyGuy84]

Thanks for the input. This is all new to me. In fact your the only ones that face similar challenges as that I have talked to thus far. Jreagan, I agree I should seek an ms specialist. A little more of my tests so far. I've had 2 mri with a month apart both showed two lesions, according to the neurologist only one of them is responsible for my symptoms. I had a spinal tap that came back negative. The mri of my spinal cord/column had come back with no abnormalities. While the doctor says my case is mild the symptoms are devestating to me. I'll be in the chat area tonight. Thanks again for the input. -ryan

[RyGuy84]

Hey I have similar symptoms. I woke up one day dizzy, slept half day. And in 15 days later I have been dizzy for 3 months now. I do have ringing in ears, some tingling and numbness in left leg and arm and sometimes face. I did brain MRI and it came back normal. I am trying to find out what I can convince my neurologist next? Spine MRI or LP. If you have lesions, where do you have them/ brain or spine?

Dizzymg, the first neurologist was initially trying to rule out stroke. I'm 31 with no risk factors.. I had two mri of my brain both with the same two lesions and mri of my spinal cord that came back normal. Spinal tap with norMal findings. An mra/mrv echo, ultra sound of my carotid, and blood work. I was becoming increasingly symptomatic with slurred speech and light headed Ness to the point of nearly passing out. I checked in at a hospital. Based on one if the lesions location and my symptoms they made the diagnosis pretty quick.

[Mamabug]

Dizzymg, the first neurologist was initially trying to rule out stroke. I'm 31 with no risk factors.. I had two mri of my brain both with the same two lesions and mri of my spinal cord that came back normal. Spinal tap with norMal findings. An mra/mrv echo, ultra sound of my carotid, and blood work. I was becoming increasingly symptomatic with slurred speech and light headed Ness to the point of nearly passing out. I checked in at a hospital. Based on one if the lesions location and my symptoms they made the diagnosis pretty quick.

When I presented with MS, dizziness was ONE of my prominent symptoms. I had had stroke-like symptoms and had to re-learn to use my left side. The dizziness was so bad that it was constant. I was nauseous when not in a semi-reclined position, to the point that, when I needed to get up to use the restroom, etc, I might vomit.

The good news -- both got better. The other news -- both took work.

Physical therapy helped me with both. My physical therapist had taken one class in vestibular therapy. She had never utilized her knowledge in her practice, and had to go back to her textbooks to refresh her memory. She helped me to determine what motions triggered the dizziness.

Then, she began to give me exercises that triggered the dizziness, slowly, at a rate that I could tolerate without becoming nauseous. I did these exercises (for me, it was a head movement) multiple times per day, until the dizziness dissipated. We had to experiment for awhile. At first, the exercises made things worse, not better.

Prior to her deciding to work with the dizziness issue, I had also been dizzy for 3 months. Within a few weeks after beginning these exercises, it was much improved, and soon it was gone.

I recommend that you request your physician to give you a referral to a physical therapist with experience in vestibular therapy. Your issue might be different than mine, but, it's worth a try.

[hunterd]

Run (while you still can), don't walk, to a neurologist who specializes in MS. Seriously, you have dizziness, light headedness, weakness to both an arm and a leg, and slurred speech, and your neuro says your MS is mild?

For that to be the situation, you already have several lesions in critical areas. By the time your neuro thinks your MS is "bad enough" for you to start a disease-modifying medication, you will already have incurred irreversible nerve damage and it will be too late. Even if you choose to call your MS "mild" now, MS is only mild until it isn't.

MS disease-modifying medications have been around for 15 to 20 years now (albeit, the early ones now have the lowest efficacy rate of all of the meds now available), and research has shown that, the early a medication is started, the better the outcome over time. There will never be a better time than now -- at your minimal level of never damage -- to start a disease-modifying medication that can slow the rate of progression. There are no guarantees, but the odds are much better if you're on a med than if you aren't.

Now, you might decide that you don't want to take a med, or might try one and not like the side effects of the meds you try, and choose not to take one. That's fine if you make a conscious, properly informed choice. But for a medical practitioner to misrepresent the state of MS research by not giving you full information is not acceptable. I can't even imagine that a neurologist with any real education and experience with MS would ever say that to a patient.

You deserve to be evaluated and treated by a neurologist who is current in MS research and treatment. You can find a neurologist who is savvy about MS by:

1. Going to the neurology department of the teaching hospital/clinic at a university medical center (many have MS departments)
2. Going to the website of the Consortium of Multiple Sclerosis Centers an searching to see if there's an affiliated clinic in your area (www.mscare.org > Directories > MS Centers, then fill in your location)
3. Contacting your local chapter of the National Multiple Sclerosis Society and asking for their list of neurologists (those are just names and not recommendations

ditto, good advice.

[DarbySnow]

Been thinking about your post & haven't commented because I'm still kinda learning how to use this forum. I was diagnosed in February (see my thread re speech problems) & I started Tecfidera on April 1st. My symptoms sound much milder than yours & I still got a prescription right away. Mind you, I am Canadian so I don't know how ms care differs. I know you guys have access to drugs & treatments we don't have like CCSVI. However, I was referred to an ms clinic right away & have a neurologist, a nurse, a dietitian and a physiotherapist assigned to me. Just my opinion RyGuy but I think you need to start some medication ASAP

[palmtree]

I've left this thing hanging and I want everyone to know what happened.

The United States is not a place where our government rounds up everyone who is sick and takes us to death camps. I knew I had to find a way to get help. My doctor and current caregiver, who is a social worker, did not have any advice that would put my mind at ease.

I called the ACLU. I knew I had some rights. The woman who answered the phone told be that they do not handle APS but referred me to an agency that could help. They picked up the phone right away and told me at the bottom of the Adult Protective Services website, there is a clause that says, "you have the right the refuse APS services at any time."

She told me to call them and tell them in their own words what I want. I did that. I told them I no longer want their services. They are going to follow it up with a legal letter to APS.

We have rights. If anyone else is in this situation, please don't think you must cooperate with people like this.🇺🇸

[sarabeach123]

When I had my first brain MRI the neurologist who read the scan said I had no lesions. But the MS neurologist said that was not true and pointed out a lesion to me (not that I could really tell or anything!). Seems to me that you have to see a MS neurologist to be sure. You might have more lesions than the original neurologist is seeing. My neurologist was keen to get me on medication right away because my MS is "mild". And he is hoping the medication will help keep it that way.

[Goldfinch]

Run (while you still can), don't walk, to a neurologist who specializes in MS. Seriously, you have dizziness, light headedness, weakness to both an arm and a leg, and slurred speech, and your neuro says your MS is mild?

For that to be the situation, you already have several lesions in critical areas. By the time your neuro thinks your MS is "bad enough" for you to start a disease-modifying medication, you will already have incurred irreversible nerve damage and it will be too late. Even if you choose to call your MS "mild" now, MS is only mild until it isn't.

MS disease-modifying medications have been around for 15 to 20 years now (albeit, the early ones now have the lowest efficacy rate of all of the meds now available), and research has shown that, the early a medication is started, the better the outcome over time. There will never be a better time than now -- at your minimal level of never damage -- to start a disease-modifying medication that can slow the rate of progression. There are no guarantees, but the odds are much better if you're on a med than if you aren't.

Now, you might decide that you don't want to take a med, or might try one and not like the side effects of the meds you try, and choose not to take one. That's fine if you make a conscious, properly informed choice. But for a medical practitioner to misrepresent the state of MS research by not giving you full information is not acceptable. I can't even imagine that a neurologist with any real education and experience with MS would ever say that to a patient.

You deserve to be evaluated and treated by a neurologist who is current in MS research and treatment. You can find a neurologist who is savvy about MS by:

1. Going to the neurology department of the teaching hospital/clinic at a university medical center (many have MS departments)
2. Going to the website of the Consortium of Multiple Sclerosis Centers an searching to see if there's an affiliated clinic in your area (www.mscare.org > Directories > MS Centers, then fill in your location)
3. Contacting your local chapter of the National Multiple Sclerosis Society and asking for their list of neurologists (those are just names and not recommendations and, by some online reports, some of them are duds, but better than just going to the general neurologist who's on your insurance list)

You can keep going to a neurologist who tells you what you want to hear, or you can get another opinion by a neuro who has a better grasp of the disease you're facing. A lot of the MS veterans here would urge you to do the latter. There will never be a better time for you than now.

Listen to this poster, OP. He knows what he is talking about. I second the idea of looking for another neuro. Yours, frankly, sounds like a generalist without current knowledge of the disease. Saying about treatment I totally agree with: Time is brain. Hit your MS aggressively, because IT will not be so nonchalant about how hard it hits you.