Joining the club

[denise84]

Hi everyone! I was just diagnosed with MS on June 6th. After reading a lot of posts on this forum, it seems like my diagnosis was done fairly fast. I had an MRI, lumbar puncture and blood work all within a week. It seems like my MS was easy to diagnose, mostly because of all the lesions that were found through the MRI. I was told that I've probably had MS for three years now. Considering all the lesions I am doing pretty well. Some tingling and dizziness, otherwise my left foot/leg stop working when I walk for more than 10 minutes. The walking is the most frustrating aspect for me, I am just 29 years old and last year at this time I still went running. Now that won't work for me anymore.

I am really hoping to find answers in this forum for my many questions and to exchange thoughts and ideas on this disease. There are a few things that currently concern me.

1) When the diagnosis was clear, my husband and I decided right away to try to conceive (fun part of the diagnosis so far;-). If the neurologist would have recommended against it, I would have started with medication. Now I am wondering if it would have been better to get a second opinion on this.

2) I am also just concerned whether I am taking the right steps in general. How do you find a good neurologist/physical therapist? How many opinions should you get?

3) It might sound silly at this point (and I hope it is silly), but I am really concerned that I might have PPMS. Only in 2009 I can pinpoint a time when I probably had an exacerbation, more tingling and extreme tiredness. Otherwise it just seems like tingling/dizziness have stayed around (not every day, but frequently) and my walking has become worse for a year. I also have moderate to severe burden of white matter lesions throughout the supra and intratentorial white matter and throughout the cervical and thoracic cord. Isn't this where people have lesions who have PPMS?

Again, I would be very grateful for input on any of my concerns. Thank you!

[JerryD]

I wish I could help you out with some things that you asked. I was dx'd with PPMS in 2009 and I can tell you that there are no FDA approved drug treatments. You should take care of yourself, physically and emotionally. Get your vitamin D and B-12 levels checked and normalized. Good luck on your journey.

[22cyclist]

I will try to answer your questions as best I can. Welcome to MS World, glad you decided to join us!

1. When the diagnosis was clear, my husband and I decided right away to try to conceive (fun part of the diagnosis so far;-). If the neurologist would have recommended against it, I would have started with medication. Now I am wondering if it would have been better to get a second opinion on this.

I think your neurologist followed your lead on this one. If you wanted to get pregnant, it doesn't really matter when, you would have to go off at that time anyway, so might as well start in the beginning. Did you get pregnant by the way? If you don't for a while, you may want to reconsider, but this is a VERY personal choice! It is yours to make!

2. I am also just concerned whether I am taking the right steps in general. How do you find a good neurologist/physical therapist? How many opinions should you get?

If you like your neurologist and feel comfortable with them, then you do not need a second opinion. Are you seeing an MS specialist? A good way to find a specialist is to look at your local National MS Chapter's website and they have a list of names of neurologists that treat MS. Generally University hospitals have MS specialists in them as well as balance and MS specialists Physical Therapists (They have to go to school extra to be an MS spec. PT).

3. It might sound silly at this point (and I hope it is silly), but I am really concerned that I might have PPMS. Only in 2009 I can pinpoint a time when I probably had an exacerbation, more tingling and extreme tiredness. Otherwise it just seems like tingling/dizziness have stayed around (not every day, but frequently) and my walking has become worse for a year. I also have moderate to severe burden of white matter lesions throughout the supra and intratentorial white matter and throughout the cervical and thoracic cord. Isn't this where people have lesions who have PPMS?

A heavy burden of lesions in the cord can happen in PPMS, but can also happen in RRMS. Your feelings of tingling and dizziness are probably just from the lesions themselves. They do not have to be lit up to cause havoc, and can last a long time-every day in fact in some cases. For my brain stem and cord lesions the symptoms come and go day to day whenever they feel like it, but I know they are nothing new, so no need to report those as an exacerbation. Your walking is more concerning and makes me wonder if you shouldn't get on a DMD to slow the progression. Have you talked openly and honestly about this to your neurologist? If not, now is the time.

You are experiencing foot drop from what it sounds like, and could benefit from PT and possibly and ankle foot orthotic device. You need to have some words with your doctor. Tell him/her your worries, and you two need to sit down with a plan so that you can get on a DMD in the near future.

Hope you feel better soon.

Take care
Lisa
Moderation Team

[denise84]

Lisa, Thank you so much. It's just good to hear someone else's thoughts.

Did you mean that I should consider going on a DMD because of my walking? Or that I should not even bother since I might be PPMS?

My neurologist has other MS patients, but I don't think that he is a MS specialist. I am going to check out the MS socitey list.

As of today my period is three days late. But I guess I'll still have to wait to know for sure. I've given myself until October to try to get pregnant. After that I might just go on DMD... But I guess it's all about taking one step at a time...

[Sarahsue]

I want to comment on finding a good neurologist and second opinions. I actually had my MRI done be a chiropracter and so when the lesions were found, she couldn't tell me much other than what was in the radiologist report. I went to one neurologist because I saw him before and I could get in faster. He said that he didn't think it was MS because I didn't really have any symptoms.

He recommended that I go to an MS clinic. I already had another appointment with a local "MS specialist" so he said to go ahead and keep that and then go from there. Well, the MS specialist said it was MS. I saw her for about a year and a half but since I don't have the classic symptoms of MS I heard a lot of "I don't know what that means" and "I have never seen that before."

I finally had my PCP refer me to an MS clinic where I actualy saw 2 doctors and they gave me the official diagnosis and we developed a treatment plan. I am very glad that I went to the MS clinic.

I guess the moral of this is, if you feel comfortable with your neurologist and you trust him, then go ahead and stick with him. If you want a second opinion, don't feel bad about getting one. Your neurologist might even be able to suggest one to you, or ask your PCP.

[tomblue]

Hi...

Hi and welcome to the forums , I wish you luck for your treatment and I believe you are going to get great support here.