Newly Diagnosed/ In denial

[Meg8791]

Hi , I'm Meg from MD. I was diagnosed in June 2013, the day after my 35 birthday is when I noticed something wrong.

Both my feet were tingly(pins and needles) . I work full time , married , with 2 kids ,6 and 10. I am an office manager/purchaser for a landscape company so I am
Outside and inside , I move around a lot. So I walked around thinking I sat wrong and the feeling would come back. I then asked some of my coworkers - hey have your feet ever stayed tingly/numb. Well everyone said no and one guy said uh that's not good u need to see a dr. I brushed him off and thought I pinched a nerve in my back- although I don't have back problems or never did. I thought well I'm getting old.
This was Monday. Tuesday- same sensation in both feet. Tuesday evening I brought work home and I was sorting papers on my office floor. I was kneeling and sitting with my legs crossed. I got up to take a quick bathroom break.i drink lots of coffee or used to. Sorry if this is tmi but when I wiped I noticed I was numb ( not tingly just numb -like losing 50% of feeling ) I could feel but not really feel if that makes sense. If anyone has had an epidural it's like when the feeling starts coming back but it feels weird. I could still control my bladder etc, it was the whole perineal area all the way around from my hip bone to just below my rear. I could feel my legs down to my feel, but my feet were numb and tingly and my "saddle area' was numb.

So- I thought that is not good. Well I must have really pinched a nerve. I had little pain- just my lower back ached. By wed night it didn't go away so I made an appt to see my gp thurs. The doctor was alarmed, told me it may be ms but it could be lots of other things. He hugged me and found a neurologist that could see me the next day. His office made calls until they found one. I had an appt for Friday at 5pm.
Friday when I woke up the numbness was moving up from my feet and into my calves. I was scared And had my husband take me to er. I was admitted, and in the hospital fir 5 days. Lots of blood work, 2 MRI 'a, spinal tap, chest x-ray, and intravenous steroids( which I hated and didn't help me at all- I blowed up like a balloon , heart palpitations, and my veins were burning from my arm into my neck).
MRI of cervical showed active lesions and the thoracic spine showed an old lesion.
He neurologist sent me to a rheumatoid arth dr bc he thought that's what I had. Went there. They took blood. Nothing came back for that and when I went back to the neuro dr he said I have ms. Only one of my blood test results came back elevated so it was not a def marker for one disease.

I forget offhand - it was only elevated a little over 'normal' and it was homogenous.
I also have been having hives and itching all around my body. It changes daily. It is terrible. Oh it took about 6 weeks for my feeling to return to 'normal ' in my feet and saddle area.

I am just not completely convinced I have ms.
I have tingly off and on in my feet daily. Random twitching and random shooting nerve pains that happen all over my body but not daily. I do get back in my neck and legs and I take advil. I have horrible fatigue. And my
Memory is terrible now.
Right now the rash and hives are on my thighs and it is horrible. I'm on Benadryl around the clock. I have my follow up with my neuro tomorrow - he wants to up me on copaxone. I want to ask him about treatment for fatigue bc a zombie. Thanks for listening

[22cyclist]

Hi Meg and Welcome to MS World. It sounds like the benadryl around the clock is making you even more fatigued. You may want to see a dermatologist for the rash, and take them your bloodwork as they may be able to make something out of it. We could all guess, but you need a doctor to work through this with you.

Secondly, your MRI has confirmed your MS, so that should put your mind at ease. MS looks a certain way on an MRI. It is not nonspecific, it looks like MS and will be stated that way. Talk with your neurologist if you are concerned with your diagnosis.

Copaxone is a good drug to start with, but make sure you have all of your concerns addressed before you start medications.

Take care and good luck!
Lisa

[tracibk]

Welcome, I know exactly what you mean about feeling 50% on your skin. It has happened several times. I feel touch but not all the way. Many years ago I would get itchy thighs if I was walking a lot but that hasn't happened in 15years (several years before my dx) but I never had a rash. Best of luck!

[Camsue]

Hi Meg

Welcome! You've described alot of the same feelings we've all felt. Good advice to start on one of the meds.

Take Care

[Myoak]

Meg,

I am so sorry that you are having serious issues with your health and MS seems to be involved. MS is less defined than most diseases so it often takes longer to diagnose. Presently, the cause of MS is unknown and that makes a cure difficult to find. Right now there are several FDA approved drugs for treating MS but they all have safety issues and varying degrees of effectiveness. A drug’s effectiveness in MS means how well it slows progression of the disease. May I suggest an alternative to try before beginning a life-long drug therapy?

A doctor with MS has written a couple notable books about her MS and the successful treatment of her disease primarily using diet. She has regained a great deal of function both physical and cognitive. Her name is Dr. Terry Wahls and she is presently conducting MS research at the University of Iowa. A scientific trial is presently underway in ms’ers which employs the diet she developed for her own MS.

Dr. Wahls new book, The Wahls Protocol, came out just 3 weeks ago and is available on Amazon for $16 - $17. There are other diets which ms’ers use to manage disease, Swank and others. But I find Wahls very thorough, as scientifically rigorous as any I’ve looked at, and certainly current. She employs a great deal of recent scientific discovery along with her personal experience.

We may not know the results of the Wahls diet trials in Iowa until 2016 but we do know what worked for Dr. Wahls and many other ms’ers who give testimony in her book. My guess is that when trial results are published we will learn that MS may be better managed, resulting in better health through diet than through expensive drugs with awful side effects. JMHO.

Meg, you may be overloaded right now but please look before you leap into a drug regimen. History has proven you will need to act but take your time. Short term steroids can get you past this flare-up so you don’t have to begin a DMT immediately. Please study first. You were diagnosed in June of 2013 so you need to get active and come up with a plan for treating your condition. Ignoring, denying, not confessing it will not work, although everyone first goes that route, it seems. You have to deal with what is going on, whatever it is called. Typically, untreated MS is worse than if it is treated.

Statistics compiled for years proves there is less progression of MS on the approved DMT’s than if they are not taken. So if you don’t use diet, LDN, or some alternative you should choose one of the meds for MS, IMO. Be wise. If "first do no harm" is important please consider diet before anything else. Chances are you will be healthier, look better, feel better, and be mentally sharper if you give your body food it needs for good health.

Meg, whatever you choose, we support you. Thank you for posting. We are always learning from one another. May peace give rest to your mind and body at this pivotal moment in your life. We are with you. You are in our thoughts and prayers.

[Temagami]

Meg-
I had the same initial sx and 5 days in the hospital as well with oodles of tests. I know what I DON´T have

I have found that gluten free and dairy free (it´s the protein NOT the lactose) have made the buzzing almost completely disappear. Am reading a book called Gutbliss- brand new and really good. Please consider dietary changes. Every time I "ache" for pizza, I remember that mobility trumps cheese.

I do take Gilenya. Failed cop axone.

[CaroleK]

Hang in there

Hi Meg: Your onset was very much like my own and I too had/have the 'saddle anesthesia' problem. I was dx'd in the summer of 2011 and was easily in denial for well over a year. I changed my diet (and still follow a Swank inspired low fat, no processed foods one) and, while I've failed on two meds since then, I do believe eating healthy has helped me and I will continue to do this (it certainly can't hurt and it makes sense that it can help..Terri Wahl's explains it well I think).

LDN, if you can get your neuro or someone to prescribe it, helped my spasticity quite a bit, if this is ever an issue for you. There are some people who swear by it as a primary treatment option for MS. The nice thing about LDN is that it is quite safe to take.

The most important thing in all of this is to be your own advocate. I would recommend you be open-minded about diet, exercise, and alternate treatments for MS (such as HSCT which has shown to be most successful with aggressive forms of RRMS). This is a great forum to share your issues, concerns, and just to find other people to whom you can relate. Welcome!

[Meg8791]

Thanks!

Thank you all who replied. Lots of info for me to look into.