Scared... MS specialist appointment soon

[Kyhu3]

Hello all. I have been having ongoing symptoms for approximately 2.5 years now. I live in a small town where i have regularly seen a neuro over this whole time and I have not yet got a diagnosis of anything. I have had an MRI x 2, CT scan, EMG, NCV test, Blood work and x-rays. All negative. Most of these tests were done early on. The last MRI was about 6 months ago. I have symptoms of right sided weakness (no actual weakness detected by neuro), pain above and in right eye, changes in right eye vision, aches and pains all over body, feelings of right arm weakness and foot drop, SEVERE fatigue (that comes and goes) as well as constipation and abdominal pain.

I was referred to a neuro opthamologist and she did not see any signs of ON. She did a full exam on eyes.

I have continued to follow up with my local neuro, however have been frustrated for a long time because no one can seem to tell me what is wrong.

My newest symptom is pain across the top of the ride side of my head that comes and goes, seems to slightly effect my vision.

To make a long story short, I scheduled an appointment with a Neurogist, MS physician that is in a larger city near by. The appointment is the is week and I am so very scared ( 4 month wait time to get in). I don't know what to think and I am scared of what is to come. I am a 29 year old female with a health history of Lyme Disease (blood tests are negative now)

Looking for thoughts and suggestions also with possible ways to calm anxiety and fears.
Thanks!

[mollyanna]

I'm so sorry that you are on this rollercoaster ride. It's scary and exhausting. It's good that they are getting you into an MS specialist.

I'm also in limboland and not sure what to make of things. I'm working with my neuro (who is not an MS specialist) but she is trying to rule out MS so I can relate to a lot of your post. I live in a heavy Lyme area so I have had all of the tests too. In reading about it, the tests can be negative even if you do have Lyme? Perhaps with your history of Lyme it was never completely gone from your system. I know that they have LLMD's that specialize in that as well.

Regardless, I hope that you get some answers soon, and I wish you luck meeting with the specialist.

[misslux]

It is scary, but you are one step closer to some answers. Hang in there!

[22cyclist]

Kyhu3: Remember to bring all of your testing to the new neurologist. Also make a list of all of your symptoms, how long they last, if they were preceded by a virus, infection, fever, stress. Here is a link about exacerbations:

http://www.nationalmssociety.org/abo...ons/index.aspx

It will tell you that MS exacerbations last >24 hours, are constant in nature, and can last anywhere from 1 day to months. Your next new symptom can't start for another 30 days in RRMS.

Be prepared to give dates for your major exacerbations.

You probably won't get another MRI as they don't change that much over a 6 month period, maybe at the 1 year mark.

Good luck, and let us know how it goes.

Lisa

[Kyhu3]

Kyhu3: Remember to bring all of your testing to the new neurologist. Also make a list of all of your symptoms, how long they last, if they were preceded by a virus, infection, fever, stress. Here is a link about exacerbations:

http://www.nationalmssociety.org/abo...ons/index.aspx

It will tell you that MS exacerbations last >24 hours, are constant in nature, and can last anywhere from 1 day to months. Your next new symptom can't start for another 30 days in RRMS.

Be prepared to give dates for your major exacerbations.

You probably won't get another MRI as they don't change that much over a 6 month period, maybe at the 1 year mark.

Good luck, and let us know how it goes.

Lisa

Hello Lisa.
Thanks for your reply.
Do my symptoms sound like that of MS?
I do want to mention as I forgot before, my current neuro says this is NOT MS, however other physicians have mentioned the words MS to me in passing.

I know everyone has different symptoms and one case does not at all compare to the next.

I will make sure I have dates pinned down as best as possible. When you speak of major flare ups, I have not had anything that has cause me to not be able to walk or move, just more the onset of the change in vision when this all began. I have intermittent symptoms that come and go since then. Some that have lasted 72 hours some that have lasted 5 hours gone away for 3 and then back for 24 hours.

Sorry if that is not clear.

Please let me know what you think
Thanks!

[Kyhu3]

Anyone else have similar experiences ? Sorry my panic and fear are at an all time hi. So very scared.

[Kyhu3]

Anyone else have similar experiences ? Sorry my panic and fear are at an all time hi. So very scared.

Anyone at all ? Tomorrow is the day and I am so very scared !

[hunterd]

when I was diagnosed back in 2001, I remember that every appointment I had I would get a little nervous and jumpy. But after years of being in limbo it came to a point where I would be anxious for my appointments hoping that I would get an answer. I am not sure how to calm your nerves, what ever I say would be a "easier said than done" items. There is always the option of medication for your anxiety. Whichever you do, I wish you the best. And keep us up to date with whatever you find out your doctor appointment. And last but not least, I wish you the best of luck.

[Kyhu3]

when I was diagnosed back in 2001, I remember that every appointment I had I would get a little nervous and jumpy. But after years of being in limbo it came to a point where I would be anxious for my appointments hoping that I would get an answer. I am not sure how to calm your nerves, what ever I say would be a "easier said than done" items. There is always the option of medication for your anxiety. Whichever you do, I wish you the best. And keep us up to date with whatever you find out your doctor appointment. And last but not least, I wish you the best of luck.

Do my symptoms sound like ms to you ? Or ??

[Kyhu3]

when I was diagnosed back in 2001, I remember that every appointment I had I would get a little nervous and jumpy. But after years of being in limbo it came to a point where I would be anxious for my appointments hoping that I would get an answer. I am not sure how to calm your nerves, what ever I say would be a "easier said than done" items. There is always the option of medication for your anxiety. Whichever you do, I wish you the best. And keep us up to date with whatever you find out your doctor appointment. And last but not least, I wish you the best of luck.

Thank you for your reply. Do my symptoms sound ms in nature at all to you ? Thoughts and suggestions from all are very appreciated

[Cat Mom]

Try not to get too freaked out. I'm not sure where you live but I would guess that your MS Specialist will redo your tests before giving a dx. Whether its MS "festering" or not, it's good to have a baseline to compare things to. Please let us know how it goes.
Jen

[Kyhu3]

Thank you Again. I live in western PA.

[22cyclist]

Kyhu3: Your symptoms sound pretty much like they could come from anything. The only one I would even worry about writing down is the eye pain, but since you have been cleared by a neuro-ophthalmologist, there is probably nothing more they can add. You can go in and talk about your up and down symptoms, but again they could be coming from anything. I tell you this so you will not worry.

You have had 2 normal MRIs, your bloodwork has come back fine for the initial mimickers of MS or they would be chasing that.

I just think you need this appointment more for confirmation, and that is a good idea. I wouldn't go into it worried about MS though, you have been worked up pretty well for that.

Good luck and let us know how it goes, OK?

Lisa

[Kyhu3]

Lisa or anyone,

So you would not be concerned about the sensations of weakness? Like with testing of strength I can resist manual pressure however my leg and arm feel weak with walking and activity. I am confused by this.

[SNOOPY]

Hello Kyhu3,

So you would not be concerned about the sensations of weakness? Like with testing of strength I can resist manual pressure however my leg and arm feel weak with walking and activity.

I have symptoms of right sided weakness (no actual weakness detected by neuro)

When a Neurologist does a Neurological Exam he is looking for "signs" that might indicate a Neurological problem.

Your Neuro did not detect any "sign" of weakness.

It is possible for your weakness to be perceived weakness on your part as your neurological exam did not indicate weakness.

sensations of weakness

Those with MS do not have sensations of weakness.

When you have MS and weakness, it is actual weakness and can be confirmed by a neurological exam.