Very Close to Being Diagnosed

[Chicken Mama]

Well...the difference between me and you is that you have proof of a new lesion. I wasn't knocking taking meds. Everyone's situation is different. It sounds as if you are doing your homework, and it sounds like you are doing what is best for your situation. Everyone falls off the wagon from time to time. Don't be too hard on yourself. IMHO, getting off the wagon once in a while keeps you from completely going off the deep end, LOL.

[Chicken Mama]

I have been pouring over so much information in the last six months. I know how encouraging it is for those in limbo to hear what other people are going through, so I thought I would give an update in case anyone is interested or having similar experiences.

I just had my six month follow-up MRI. Doc only did the brain this time since he had determined that it looked like my lesions were a one-time happening, rather than something on-going. This was just a check up on 'old' lesions (I have 15 to 20 of them in the frontal lobes).

Well...I have two new brain lesions, and two old lesions have disappeared. That shows activity, (rather than something stagnant, as we thought) but still not enough for a diagnosis based on the MacDonald criteria, as my Spinal Tap was negative for O-bands and I have no lesions on my spine. The Ophthalmologist put plugs in my tear ducts, and so far, I've not had trouble with blurriness since I got that resolved and got a new prescription. I'm not entirely convinced that the problem was dry eyes, but I'm willing to wait and see if it happens again, and then catch it in the act rather than after-the-fact.

In the past six months, I have felt like crap most of the time. The fatigue has been debilitating. I've had cognitive issues, speech issues, some swallowing issues, urinary frequency and urgency and lots more problems with my legs.

My legs hurt with a stinging pain a good deal of the time. When they are not hurting bad, I always have tingling, as well as numbness. I've had more difficulty with balance, I'm cutting corners short and bumping into walls. My legs feel weak, and sometimes seem to almost buckle. My legs often feel heavy, as well.

I get weak and fatigued when it's hot, and where I live, it's already HOT (and humid).

My arms hurt and are weak and tingly. If I'm doing something that requires repetitive motion with my arms, I have to constantly switch arms.

So....Doc is sending me back to get the cervical MRI, and he is also sending me to get cognitive testing.

I really respect this doctor. He doesn't want to misdiagnose me, or rush into a diagnosis. I like that, however, it's frustrating to feel like crap and have all of these crazy, weird symptoms that come and go and not have a name for it.

I also have to add that I took in four computer typed pages of what has been going on with me, and he sat there and read it and made verbal notes as he read, and asked questions and seemed interested. He also told me he was sorry I had been feeling bad.

I've had the good, the bad and the ugly as far as doctors go, and I've never had a doctor say that to me. I'm sticking with this guy.

My heart bleeds for those of you who have had bad doctors.

Anyway, that's the next chapter of my story. I hope it helps or comforts someone!

[New normal]

Thank you for the update. Your story is very similar to mine. It is great you remember us in this world, and take the time to post

Good luck with your discovery process.

[WillyNilly]

Yes, I appreciate the update also.
I'm sorry you've been feeling so bad. I "think" I know what you mean. This "feeling bad" is exactly why I chose not to use the only DMD available to me because of other medical issues. From my own research, talking to people that have used it and stopped and my Neuro, I decided that the "feel bad" I already had and was sort of used to dealing with was better than an artificial side effect "feel bad" that could be worse but dosen't HEAL. I'd gladly feel worse for awhile for a FIX- but to feel worse full time to MAYBE reduce reoccuring flares that don't happen often anyway? Wasen't for me.
About those dang lesions- I wanted to say that I have brain MRI's about every 2 years now, sometimes more often. Oddly, there have been those where I have felt just ROTTEN and shown nothing much different. Then there have been those where I get called back in with contrast active new or growing lesions- but physically/cognitively I wouldn't have known because I feel like I always do. Without the MRI I never would've known there was a difference.
I'm so glad you have a Doc that you feel really hears you! Sounds like a keeper.
Please let us know what happens next...

[Chicken Mama]

Thank you Willie and New Normal for your replies. You never know if your story will help someone or not. I know for myself, I have poured over forums and websites, and it's always comforting to know that others are going through the same thing.

Willy, I hear what you are saying and I have thought about it a lot! My thinking is very much along the same lines as yours on the meds should I ever be faced with having to make that decision.

It's a tough one to make. I'm a firm believer in going as natural as possible. I just recently read about the symptoms of being low on Magnesium. It's amazing how many symptoms it causes which are similar to MS, so I've started to take a supplement, and I'm hoping it will ease some of the symptoms I'm having. We shall see.

I have NeuroPsych testing on Monday and a Cervical MRI on Tuesday. I'll definitely give an update when I have one.

Yes, I really do believe my Doctor is listening and wants to be accurate and thorough. I'm grateful.

[New normal]

Our stories are very similar and if you read my other posts u will see I hv bn dealing with symptoms for over 30 years...but now am with ones that are visible and impacting my quality of life.

I, too, believe in natural healing. The one thing that has saved me is water....not drinking it...being IN water. My husband spent his retirement $ and bought me a swim spa. I feel so blessed to have it enclosed on my deck.

At first, I spent hours in it...and it relieved my body pain nearly completely. However, my challenge now is body tremors - or shakiness - as others call it. I am now on 1200 mg gabapentin daily which until the last few days controls most of my tremors. But in the water I have NO tremors.

I went thru a bad spell where the tremors actually became seizure like and I was sleeping nearly all the time ...after being in bed for over two weeks, I went to my GP and asked for a thyroid analysis....learned it was low...AND learned that thyroid dysfunction can mimic a lot of MS symptoms AND learned that many MS'ers hv thyroid issues.

My lesions r in my frontal lobes as well. Tremors are starting to buckle my legs regardless of rx and water which is making me nervous. L carnitine and Alpha Lipoic Acid really do help with fatigue. Calcium and magnesium are necessities for me.

I hv a follow up with neuro July 23. I am trying to look beyond the symptoms and develop some kind of alternative life that I can do.....but when the symptoms hit u in the face every morning, it is hard.

I cannot complain as I am 65 yrs old and hv had a marvelous life with my husband of 42.5 years -- 5 children, 17 grandchildren....but nonetheless am having a hard time transitioning from a very active life style to one of nearly bed ridden.

My Harley is now for sale...sigh...but am looking into quads hoping I can get one with a turbo and squeaming eagle pipes...just kidding...

I enjoy your posts...and especially your authenticity...I appreciate that you seem to hv a sense of self...you are a survivor for sure...and you CAN do this.

Keep us informed.

[Chicken Mama]

Thank you for your comments (and your compliments), New Normal. I have read a lot of your posts, and my heart goes out to you. I appreciate about you your positive attitude and your gift of encouragement.

I can't believe they haven't diagnosed you with SOMETHING yet. I can only imagine how frustrated you must feel.

Thanks for the tips about the water. That's awesome that you found something that helps. I started taking Alpha Lipolic Acid, too, after I saw a post from Shashi about it. Sometimes I fall off the wagon and stop taking my vitamins, but I REALLY notice a difference when I go back on them.

Sounds like your hubby is a piece of gold. I don't know what I would do with mine, either.

Sorry it took me so long to reply, but I forgot to come back here! This forum is large.

[Chicken Mama]

I wanted to add this here in case anyone stumbles in and wants to know my outcome:

For those of you who have been following my story I thought I would give an update...

I have been sorta diagnosed.

Doc says he still thinks the lesions on my brain were caused by a one-time infection. I have lesions on my brain, none in my spine and my spinal fluid was negative for O-Bands. He said I will have these symptoms the rest of my life, but that he doesn't think it's progressive so he is calling it 'Benign MS'.

Here is what my 6 Month Comparison MRI said:

"Approximately 10 punctate FLAIR hyperintensities in the cerebral white matter compatible with the clinical diagnosis of multiple sclerosis. Comparison is difficult because of the small size of the lesions. Possibly two new lesions since the previous examination, but a few lesions visible on prior exam are not seen on the current exam. No enhancing lesions."

The way the Doc explained the number count being different is that they are so small they are hard to count, and sometimes you get different 'slices' with the MRI.

My cognitive testing was 'normal' for the most part. After a 30 minute interview, and a T/F test (MMPI) the Psychologist (Psychiatrist?) who is now apparently an 'expert' on my 'personality' deemed me to be perfectionistic which leads to anxiety.

...at least that's the way I understood what my Neuro said about it.

I guess I'll have to wait until I get the hard copy of the results to completely understand the importance of that profoundness, but right now, I can only surmise that it had some impact on whether some of my symptoms are valid or not.

The Neuro said that the rest of the cognitive testing (memory, etc.) was good, and not consistent with someone who has MS. (Why am I still having problems?)

So...he set me free. I will only see him again if I have some glaring symptom (I guess, like an arm falling off or something, Shashi )

I am actually okay with this...kinda. It makes me feel less like I am in limbo (which I hate). I don't want to keep having to pay $1,000 deductible (plus the 20 % that the insurance doesn't cover) for an MRI.

I've also been thinking about it, and I don't really want to go on DMD's either, given the article I read recently about DMD's not stopping progression of the disease, and also I don't really want to go on expensive meds that will make me feel worse than I already do.

My Neuro is smart, and thorough. I think he did a good job of ruling everything else out, and was meticulous about making sure he didn't misdiagnose me. He listened to me and treated me with respect. I have confidence in him and I trust him.

If my arm or leg falls off in the future, well HEY...it's just progression. if I had known it was going to be progressive, I wouldn't have done anything differently than I am doing now (i.e. no meds, better diet, exercise).

I'm excited about working with my diet and supplements. (I have cut out grains, legumes, sugar and dairy...similar to Dr. Wahl's diet) and I have started pushing myself to walk for exercise. Even when I am so fatigued I don't think I can do it, I'm finding that I ALWAYS feel better on the days that I make myself.

So...that's it in a nutshell. I'll still be hanging around from time to time. Y'all are awesome here!