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Posted 5/18/2008 5:34 PM (GMT 0)
My name is Carolyn and I am totally new here. I have 4 children; one of whom was born at home 7 months ago. That's about when my symptoms appeared.

I had wobbly legs right after the birth (I thought it was due to the rapid weight loss) and soon after had parasthesias in the form of icy hot sensations in my neck, shoulders and down my upper back. Then I felt this pain in my right arm and shoulder and also this burning sensation in my right fingertips and right toes. I went to my PCP with these complaints and he referred me to a rheumatologist who told me I had tendonitis. He gave me a cortisone shot in my shoulder. At that appt. I told him about my week knees and vertigo. He did some examining in the form of balance testing and sensory stuff and didn't  know what it was. I then switched PCPs and at my new Dr.'s appt. told him about my wobbly legs, a buzzing or caffiene jittery feeling all the time. My vertigo, etc. I told him I thought I might have MS based on my symptoms. He ordered a brain MRI which took 2 weeks to get and then finally called me on Friday.

(And I also mentioned that my mother died of a brain tumor and my 1/2 sister has a pituitary tumor) He called and said that because of my age 44 and the spots on the MRI it indicated MS and so he told me to get my films and go to a Neurologist. Now I'm waiting for tomorrow to call. I am so scared right now. I am mostly worried about my 4 small children and how much they depend on me! Sorry this is so long but I wanted to include everything for clarity. Thanks for any help or suggestions.

Carolyn

Posted 5/18/2008 6:44 PM (GMT 0)

First, take a DEEP breath.  If you DO have MS (and it's really much too early to tell!) that doesn't mean all that much with regard to your kids.  You'll likely be around a long time -- I've had MS for 25 years, now, I'm 61 -- so set that worry aside.

There's a lot going on with you -- at age 44, having a new baby, a history of other neurological problems in your family (the brain tumor, the pituitary thing..). Make sure you tell the neuro all that when you see him.

You may not actually see a neuro tomorrow -- so don't be disappointed if indeed you have to wait awhile.  Did your doctor offer any suggestions about which neuro to see, or offer to refer you to someone?  Usually a doctor's referral will get you in to a doctor much more quickly than you simply calling an office.  You might want to call your doctor back and ask for assistance, so yo u don't have to wait a really long time to be seen.

The neuro will want a complete family history, so while you have some time now, write down everything you can about your health history, and gather up your records, including the new stuff. Make sure your rheumatologist knows you're seeing a neuro, and have him forward any records he might have, too. And indeed take the MRI and any written results from that (or have your doctor forward them for you.)

What your rheumatologist did sounds much like what you'll get at the neuro's office -- a test of your balance, sensory testing (pins pricking you to see if you can feel them), strength tests, other things.  He may do a series of blood tests to rule out other things (if your primary care doctor hasn't already done that..and sent along his records).  He'll want that medical history, and will ask about your pregnancies (and if you had any health issues after the first three).

All this may take awhile, so you'll not get answers right away anyway.  Just hang in there, come back with questions, love your kids, and give that new baby a hug from us here!  :)

Take care.

Posted 5/18/2008 7:55 PM (GMT 0)
Sunday p.m.

 

Hello Carolyn:

 

Uppity is exactly correct.  Take a deep breath.  Then take another one.  If you can find the time!!!

 

I would suggest you contact your state MS Society for a refferral to a MS specialist neuro.

 

MS is not a fatal disease.  You are gonna do it!!!

 

John

Posted 5/18/2008 8:17 PM (GMT 0)

Hi Carolyn I just want to welcome you to the board. Uppity and John have given you some excellent advice…the waiting process can be really scary and it is all too easy to jump to conclusions and think of worst case scenarios. Hang in there and try and distract yourself as much as possible during this waiting period (easier said than done, I know). Also, feel free to ask any questions you might have, we are here to support you.  

 

Sunny

Posted 5/18/2008 10:00 PM (GMT 0)
Thankyou Uppity for the suggestions and thanks John and Sunny for giving me such a warm welcome. I called an old friend who I don't see often. She lives on the Pacific coast and I'm on the East coast but we are such good friends. I met her in 7th grade! Her mom got on the phone and gave me some great pointers. She said above all, try to de-stress your life as much as possible. Ha, yeah like that's easy with 4 small children.

My PCP gave me the number of 2 neurologists. Should I have copies of my own or should I just call my old PCP and have them send my records directly to the Neuro? I did learn that the appearance of MS can happen right after having a baby because the pregnancy masks the disease. From what I have read about MS; I may have had symptoms for at least 9 years.

I will say that since this attack (if that is what it is called) I don't feel like myself. My memory is a little slow and I do have this slight, ever so slight wobbly feeling when I walk. The most noticeable symptom is this constant sore neck. It seems that my neck is kind of swollen. I do have a chiropractor that I will call to make an appointment with.

Uppity, I will go and gather all the info you suggested. I have even thought about writing down my symptoms and when they started. Some of the things that happened I am not sure how long ago or how long it lasted. The vertigo wasn't too bad and I think lasted only several days. I wonder if I actually had 2 attacks? At least I have my calendar to check who I saw and when??
Thanks everyone once again. I can't wait to get an appointment and talk to the Dr. I will call tomorrow and request my films for the appt.
Carolyn
Posted 5/19/2008 12:20 AM (GMT 0)
Be VERY careful with the chiropractor, ESPECIALLY when you're talking about "neck issues". That's REALLY very dangerous. I acknowledge up front -- I am WAY skeptical of chiropractice....but I've read way too many stories about "neck adjustments" gone way bad. I really don't think that's a very good idea when you might have other neurological issues going on.

Think about your neck. There's your head...and then all the nerves and important blood vessels get "compressed"together and flow through your neck to the rest of your body. Your NECK. And you're going to ask someone to "manipulate" your neck?? Wouldn't happen to ME, for sure! Way too much chance of something going seriously wrong, there....

As for your medical records, you really don't need your own, if you're sure your doctors will forward them to the neuro, and do that in time for your appointment. The only time (in my opinion) that you really need to get your own copies is if you're not satisfied with your doctor and intend to seek a new physician (whatever the specialty), or if you're moving, or think he won't be able to get them transferred quickly enough.

Do start tracking when symptoms first appeared. Remember that MS is a "relapsing-remitting" disorder -- it can (and often does, particularly in the early stages) disappear for months, even years at a time, only to flare up again. And indeed pregnancy can affect symptoms..they can disappear during pregnancy, only to come back when the pregnancy is over. And try to find ONE doctor that you have confidence in, and stay with him. He'll need to watch you over time, and having ONE doctor watch you over time, and care for you over time, will be a better chance that you'll have better care.

Let us know what happens. We'll try to offer our experiences to help you along the way.
Posted 5/19/2008 1:11 AM (GMT 0)

Hi Carolyn,

Welcome to the board.  I am sorry to hear that you are not feeling well.  I understand your fear.  I want to second what Uppitycats had to say about the chiro.  I am terrified of them.  I have spinal lesions and was told that pressure on those could cause an increase in symptoms and a flare.  My neuro has even said I need to watch just your average massage type pressure.   Is there anyway you could wait until you have seen the neuro??? See what he or she has to say and until then try to manage pain with some tylenol and maybe heat or ice packs.

On the records.  I do both.  I carry mine and ask that they be sent.  It really paid off when the records did not make it and I had my own with me.  The drive to my neuro is an hour and half and I was glad not to have to reschedule due to no records.

Good luck and let us know how you are doing. 

Posted 5/19/2008 2:38 AM (GMT 0)
Okay I hear ya on the chiro.. chances are I won't be able to go because making appt.'s and going are tough for me because I have to either find a sitter or bring 2 of my 4 kids with me. My husband has Monday's off so if I make appt.'s I try to make them on that day.

I have been trying to just take it easy today. My best friend's mom called (the one from California)and she recommended that I go to a Neuro that specializes in MS. Or at least one who has 80% of his patients with MS. So I will call my PCP and ask them but in the meantime I have a number for referrals. It's the National MS Organization. Yes, it's true that it's important to have a Dr. that will follow you through the ups and downs. I know I'm getting ahead of myself here so I will wait. Waiting is so hard. I am truly greatfull for all your help with me. This is so much to take in right now and this place has already helped.
I'm going to try and get some sleep.
Carolyn
Posted 5/20/2008 3:57 PM (GMT 0)
Hey Carolyn

I think i missed this post....or forgot it!...and replied to u on another thread. Sorry. Guess i didn't realize the doc had already seen the films. Anyway, i TOTALLY agree with the others here...be VERY VERY CAREFUL going to a chiro!! So much can go wrong with so many probs already happening for u...and in such an i'mportant location for u. Take good care and go easy on this.
Posted 5/20/2008 11:53 PM (GMT 0)
Hey carolyn, welcome to the board! You've found the right place to find calm and hope and great advice... the number one advice is drop the Chiro. Not because they can't do good, but because in my personal experience looking back on my own situation now, they aggravated the daylights out of my body and caused me to feel worst yet!  Uppity's right... bones and nerves and muscles... moving the bones around can pinch nerves and muscles depend on those nerves. The chiro serves a good specific purpose but until you get a neuro on your case, I'd let him go now. My chiro seemed to think she just had to "undo" a particular knot in my back over my shoulder every time I went and I would hurt so bad afterwards! I quit going, and I quit hurting there! :)

This is a very long road to diagnosis... be patient with the neuro, even one who specializes in MS who KNOWS it's MS may have a difficult time getting it all together to make the dx so it takes time. And alot depends on insurance companies too. Keeping track of the symptoms feels downright obsesssive but you gotta... it's what clinches it for them when they get it all together.

I tried most of all not to project. I purposely avoided reading anything in depth about MS (I'd have been moire scared) so I wouldn't project my dx on him... or appear to be trying to cause it to be that because I was "suspicious" to begin with. I kept quiet and often let him do all his tests and questions first, then told him what's happening... figured he's the big bucks let him work it out... maybe that's not right but I wanted it to be HIS dx not mine. We went round and round though, 18 months, from yes to no to yes.

So hang in there. Love the kids every day, develop coping mechanisms for the sensations you're going thru ( I know I did) and smile. Some days it gets to be an adventure just to see what's in store cos no two days ever go the same anymore! :)

Posted 5/21/2008 2:29 AM (GMT 0)
Thanks!
Today started out much better than yesterday. I felt much calmer. I took a couple of B-complex vitamins last nite and it made a difference. I didn't have that neck tenderness and headache. I felt blessed because I had decided that I was going to not get stressed out on the small stuff and then throughout the day; nothing fazed me! The slow driver in front of me. Being late for my haircut.. the kids fussing.. nothing. I must be numb or in denial.
Oh and it's so true about the symptoms. I start feeling something and I wonder if it's all part of it.
Today I felt this burning, aching feeling in my wrist. I still have it. And I felt slightly wobbly when I walked. I have already written down every symptom I have ever had since 1990. So I will share it with the Dr. next wednesday.
Yesterday I was so upset I asked my PCP for a prescription of tranquilizers. I then realized I couldn't take them because I am nursing. I want to nurse him (breast feed) till he is a year but if I have to take drugs I will have to wean him.
okay, just rambling here. Thanks for the advice on the chiro.
Carolyn
Posted 5/21/2008 1:11 PM (GMT 0)

Carolyn,

I have found that there are certain gifts to this disease.  I know that sounds really wrong but for me it is true.  I have given myself permission to not sweat the small stuff.  I no longer obssess about those slow drivers, or the mess my boys have made playing, or the pounding rock music coming from either the piano or the stereo, I don't sweat the occasional low grade, or the quick dinner.  I have found that my priorities are in a much better place and that gives me some peace.  Do give yourself that gift as well.  Just love those babies as much as you can and by kind to yourself.

Love and prayers,

Posted 5/22/2008 2:56 AM (GMT 0)
IMPRESSION:
Several small oval-shaped faint areas of increased signal intensity are seen in the periventricular white matter adjacent to the right and left lateral ventricles. In a patient of this age this finding most likely represents multiple sclerosis and further investigation is recommended.

This is what my findings were on my MRI just to recap. I hope it's okay that I copied this from another reply.

I have great news! I got a call from my new Neurologist today and they had a cancelation tomorrow. I can see the Dr. tomorrow with my films Yeah!

Today I went to see a friend of mine who is a pain Dr. He is also married to a Dr. I told him my situation and showed him my MRI. Without being asked he started testing my balance. He had me close my eyes and do the sobriety test. ie fingers touching nose, walking toe to toe. He had to catch me because I started to fall on that test. He said my reflexes were perfect and that the problem is in the cerebellum. His unofficial opinion was that I had early MS.
I have been going around most of the day today in a 'brain fog'. I have started taking omega-3 fish oils, selenium, calcium, lecethin oil in addition to my prenatal vitamins. I am worried that I will have to wean my baby to start the medications. This is upsetting to me since I hate feeding my child inferior food. (formula)Perhaps the testing and the waiting will allow more time to continue nursing.
I feel much much better this evening. I think the positive attitude, the relaxing and the suppliments are helping. I seem to always have a stiff neck in the evening. But tonight I feel pretty good. Maybe the worst of it is over for now.
I am so grateful for everyone's support. I am sure I will have something to report tomorrow. At least maybe I will be closer to knowing. The waiting is the hard part!
Carolyn
Posted 5/22/2008 1:58 PM (GMT 0)
Carolyn,

Take a deep breath.  This usually takes quite some time.  I was diagnosed really really fast and it was still 5 months before I started any meds.  I have the balance issues too.  I have my largest lesion on my cerebellum resulting in balance and vertigo problems that seeminly are permanent ( I have yet to have any relief from that darn vertigo - two years and counting now).  This tends to be a slow disease, there is no reason that you cannot put off meds until you are done nursing James.  Was your goal a year?  That would certainly be very reasonable seeing he is 7 months old.   

I take some supplements that I think might be helpful.  It is sort of a  long list but if you want to know I will either post it or you can email me.  I really don't know if they are helping but I certainly feel like I am doing ok.  Let me know if you want my list of supplements.

Love and prayers,

Posted 5/22/2008 8:37 PM (GMT 0)
Gretchen,
Thanks for the inspiration.
Well, I saw the Neurologist. He told me that my MRI was normal! He said that there was nothing on it that indicated MS. He even looked at it with me and pointed to some white spots. He said "See, if you had MS you would have several of them all in a row". He tested my reflexes and balance and said I was normal. (I made sure to try my best on the toe to toe test) I didn't have to close my eyes and that made a huge difference. Today I still feel the brain fog feeling and I"m going to back off the B-complex for now. I'm going to start the SWANK diet too.
He told me to come back in 3 months. He really wanted to do a spinal MRI with contrasting dye but because of my nursing he was going to hold off on it. I already liked this Doc because he said "The nursing is more important right now"
He just said to keep a diary of my symptoms and to call if something really major happens or symptoms get worse. When I asked why they thought I had MS from these films he said they probably 'read' into it because of my symptoms. I told him it scared the crap out of me!
So I have to go back Mid August.
Has this ever happened to anyone? I just don't know if I still dont' have it or it's just too early to tell.
He wouldn't even do any other testing at this time. He said you have small children and it would be hard for you to go through all those tests.
How confusing. But for now I am breathing a sigh of relief. I am still going to make lifestyle changes and continue on what I call a life "course correction"
Thanks to all for the support
Carolyn
Posted 5/22/2008 9:01 PM (GMT 0)
Hey Carolyn

Wow...what a visit! I'm so glad the doc doesn't feel it's ms, but at the same time just be diligent about keeping up with those symptoms and reporting anything new and major to u'r doc. I understand the doc's reasoning in not performing anymore tests just now. I think if he felt it was urgent...as in affecting u'r dailing life functions...he'd push to do it now, but he probably feels it can wait esp given that the children are so young.

Be careful dieting right now. With all that's going on that can be dangerous unless monitored very carefully. I don't think i'd worry too much about the ms guess for now. Maybe the doc is right...that the tech was reading into it with the symptoms he/she knew about...maybe not. Either way, if it's ms it WILL show up eventually.
Posted 5/22/2008 10:04 PM (GMT 0)
That's the challenge with MRI's. Two trained people (the radiologist -- the technician would not have offered a written assessment, only a radiologist, who has much more training) and the neuro, looking at the same MRI, coming up with different interpretations.

I do suspect that the doctor is watching and waiting...and waiting until you are through nursing, or until more significant symptoms appear, if they do. Make sure that indeed you DO report back to him if anything new comes up, or if current stuff worsens dramatically. If that should happen, I'll bet he'll get you to stop nursing and proceed with further testing.
Posted 5/22/2008 10:43 PM (GMT 0)

Hey Carolyn,

The swank diet is pretty safe.  Just be sure that you are getting enough to eat.  Most people lose weight on that and you don't really want to be doing that if you are nursing.  It is a very healthy diet though and should be ok.  I am so glad to hear that your doctor does not feel you have MS.  That is wonderful news!!!!  So now you get to relax and enjoy being a mommy.  If your current symptoms get worse then you go back and let your doctor know. 

If for any reason you are doubting what the doctor said, there is always a second opinion. 

Love and prayers,

Posted 5/23/2008 1:04 AM (GMT 0)
Gretchen,
Thanks! And thanks to everyone who responded.
I had gestational diabetes with this last pregnancy and had to follow a strict no sugar, low carb diet. I know that I need to eat 500 extra calories a day because of the nursing. I'm just going to cut out cheese, milk, and red meat and instead eat more beans, rice and vegetables. I also like salmon.

I think I'm going to write my symptoms in chronological order so that everyone can see how it started. Of course right now I still have the wobbly legs feeling, brain fog and memory or cognitive problems. That was one of my problems.. little things were taking a big toll on my health. I find it hard to cope with stress more and more. Today I couldn't find a CD that we rented to return and I started getting very upset. I "flooded" and then my brain starts getting all foggy. My problems lately are about executive functions. Does this make sense? I don't know if I got this across to the Dr. today but that was my main complaint. I told him that the burning or warm feeling in my wrist that started 3 days ago doesn't really faze me. I said it feels like a heating pad on my hand.
I have to go help put the kiddos to bed.
Carolyn
Posted 5/23/2008 5:00 AM (GMT 0)
Carolyn,

Yeah that is pretty much how it is for me.  If it is just sensory stuff, I ignore it.  I have all sorts of that stuff; numb feet, icy hot legs, numbness and tingling on my left side ribs.  That stuff is wierd but does not hinder with everday life at all.  It is the pain, spasticity, brain fog, bowel and bladder issues, along with the constant vertigo that cause problems for me. 

Try not to let the sensory stuff get you down. 

Love and prayers,

Posted 5/23/2008 11:22 AM (GMT 0)
Carolyn, how old are you?  Did I see that you are in your early 40's?  Could it be possible that your hormones are wildly fluctuating because you recently gave birth .. and now are moving into menopause?  Menopause is starting in women earlier and earlier these days, sometimes as early as their late 30's.  I started exhibiting symptoms at 44.  The "pre-menopausal" stuff can do all sorts of weird things, including mood swings, emotional lability, cause the "brain fog", lots of other vague but reallly bothersome things. I would hope that one of your doctors would have made that connection and run blood tests to see if that might be causing at least some of your problems.  It's not always easy to pick up on in the very early stages, and results are probably complicated by you having been pregnant so recently...but it might be worth reminding them of your age, and that possibility!

Posted 5/23/2008 1:44 PM (GMT 0)
I will be 45 next month. And what about blood tests? Don't they have something called a CPR?
to see if you have inflammatin?

I called my Dr's office today. The neurologist and told them that I do in fact have this permanant deficit in the form of cognitive difficulties and that continued brain fog. I told the secretary "It's not like I walked out thinking I don't have MS and then suddenly my symptoms disapeared! I woke up this morning feeling the same as yesterday. I also have this wobbly balance problem. It's just as pronouced as yesterday. I also have this numb feeling in my two front teeth.
Why can't the Dr. just do those non invasive tests? Like the evoked response one?
I'm going to go play with my kids. I need a distraction today. I'm also long overdue for some hiking
thanks
Carolyn
Posted 5/23/2008 3:18 PM (GMT 0)

The only CPR I know about is cardio-pulmonary resuscitation...and that's not what you mean, I'm sure.

Here's a website that describes many of the common symptoms of peri-menopause (pre-menopause) and menopause. Read through them and see if there is any similarity to what you're experiencing.  If so ... probably need to talk with your doctor.

There are blood tests that can determine whether you're starting menopause or not -- at age 45, it really is likely -- but they're not always accurate, and if the doctor isn't doing them specifically to look for menopausal stuff, he may not see it.

"Numb feeling in my two front teeth" is not a symptom I've seen relating to MS, anywhere.

A blood test to determine inflammation -- don't know what that might be, either.  MS is not an inflammatory disease in the sense of some others that might be determined by a blood test, like rheumatoid arthritis, or lupus, though.

I wish there were some relatively simple test to determine whether someone has MS. Unfortunately there isn't. 

But again, given your age, given your recent pregnancy, I'd sure be bugging my doctor to check out a hormonal imbalance, which indeed can cause a lot of your symptoms. The cognitive stuff for sure can happen with a hormonal problem, as can numbness, tingling, lots of other things.

Here's the web site: http://www.project-aware.org/Experience/symptoms.shtml

I put "symptoms of menopause" into Google (with the quotation marks) and came up with a host of sites.

Posted 5/23/2008 4:03 PM (GMT 0)

Carolyn,

It seems you are very bothered by your many symptoms.  I would be either going back to that doctor and asking more questions or I would be taking my MRI results and any other health reports and going for a second opinion.  It seems that your gut instinct is telling you that there is more to this than what the doctor said.  Please know that we understand what you are going through and we can all vouch for your frustration.

I am heading out of town so I might not be real responsive over the holiday weekend.

Love and prayers,

Posted 5/23/2008 5:28 PM (GMT 0)

Hi Carolyn,

 

I hope you are out having a good hike today. This is stuff is very frustrating, and sometimes the best thing to do really is just distract, distract, distract. It sounds like maybe your neuro is waiting on further testing until after you finish nursing? I just wanted to second what Gretchen said above: if you feel uncomfortable waiting then you should by all means look into further testing and/or a second opinion given the disparity between the radiology report and your docs opinion. There are also a ton of other things that can mimic ms, and a lot of them can be ruled out by simple bloodwork. As Uppity mentioned hormones can really disrupt things, as can something as simple as a vit b-12 deficiency. Hang in there, and let us know how you’re doing.

 

Sunny

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