New MS Diagnosis

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ErikaMo
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 11/2/2017 5:34 PM (GMT -7)   
Hello-
I am new to MS and new to this forum. I’m terrified; simply put. I am 38 years old with an 8 year old son and 5 year old daughter- how can this be happening????
My story starts a couple of weeks ago with numbness in my feet; then my calves; then my arm. A trip to the ER and 5 MRIs followed by a 1am diagnosis of MS. First by the ER doctor and confirmed by a neurologist later in the day. They started me on the high dose steroids right away- and I got those for five days; now I am on the oral steroids tapering off. I meet with ANOTHER neurologist Monday. I believe this is to work on my future treatment plan.
My current anxiety is - my symptoms.... I am a very active person- I work out or run at least 3 times a week... but right now my legs are SO weak I can barely stand. I feel wobbly and out of it. I played volleyball (use the term “play” lightly- stood on the court is more like it) a few nights ago and my serves barely made it over the net- no matter how hard I thought I was hitting. I feel like I’ve lost all control in just a week! I thought this was supposed to affect my nerves... is it affecting my muscles too? So much and so soon? Shouldn’t my symptoms be better by the end of the steroid treatment? With the symptoms being so present - I can’t get this new diagnosis out of my mind! I'm thinking the worst- I don’t know what type I have or how Progressive it is or what.... I barely even understand what MS is yet!
I haven’t really asked any questions here- my apologies. I’m just so scared... I want input; advice; information.... anything! Any similar stories out there? Thank you!

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 226
   Posted 11/3/2017 5:21 AM (GMT -7)   
Hi ErikaMo,

I am so very sorry you have received a diagnosis of MS.

Before and during my diagnostic process I had numerous symptoms. My mobility was severely effected, I could barely walk. When my Neurologist gave me the diagnosis of MS he told me the best thing I could do is walk. He saw the look on my face shocked and told me, "I know your walking has diminished but walking will help."

My walking initially consisted of taking multiple walks within my home. After a bit (1 or 2 weeks) I ventured out side and walked half way up the driveway and back. It took quite some time to go any distance but oh so slowly I was able to. After each attempt to walk/extend my walking I would come back in the house immediately sit down before I fell down. I would be exhausted, weak, cry and then sleep. I kept trying and little by little I did see improvement. It took me a year to regain my mobility. I could walk 2 miles, that was my limit. On bad days my limit was less.

For right now stop trying to do the activities (volleyball, etc.) that you have always done. Start with baby steps and gradually increase. With time I would hope you see improvement.

Multiple Sclerosis is a disease of the Central Nervous System(CNS) which includes the brain, spinal cord and optic nerves. The CNS is our internal wiring that tells our body to do certain things. MS causes scaring (Sclerosis) along our wiring (CNS) which causes miscommunication.

Think of an electrical cord for a lamp. When the electrical cord is in good condition your lamp goes on and off without a problem. If the lamp cord is frayed your lamp may turn on/off or it might not. This is just a simplified way of explaining what happens in MS, although MS is much more complicated.

Steroids are to calm the inflammation and possibly shorten an exacerbation (relapse, attack, flare-up). Sometimes, such as in the case of mobility being effected there needs to be more intervention such as what I explained I did, working with a Physical Therapist, and a combination of rest and mild/gentle exercise. Time and patience is needed.

Take care.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

ErikaMo
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 11/3/2017 6:45 AM (GMT -7)   
Snoopy-

Thank you for your comments and for your time. I have a lot to learn and even more to accept at this point. But is sounds like with some perseverance and motivation- we can live with this illness.

Were your first symptoms related to leg strength? How fast did they come on?

What medication are you on now? Have you had any flare ups and/or how often do you have flare ups? Do the symptoms get worse with each flare up? Do you have the SAME symptoms with each flare up?

I see you were diagnosed quite a while ago.... how do you stay positive knowing this will affect you for the rest of your life? I am a bit dramatic... I know smile

Thank you!

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 226
   Posted 11/3/2017 7:54 AM (GMT -7)   
Hi ErikaMo,

A little of my story;

I went out one spring morning to mow the lawn, my husband was out of town on business. I had mowed a little less then half the backyard when my legs felt heavy, I felt weak and my hands were shaking. I turned off the lawn mower and with difficulty went into the house. I slept for the rest of the day and all night. Next morning I woke up feeling fine and with a lot of energy. I went out to finish up mowing the backyard. I didn't get very far when it was a repeat of the day before, but worse.

Over the next couple of weeks more symptoms came and nothing went away. I went to my Primary Care Physician who did an exam, told me he could not help me and came back in the room with a referral to a Neurologist. Primary Care Physician - Neurologist - testing - diagnosis took 3 months. I was 24 years old, and over time have come to understand I have had symptoms of MS since I was a child. At the time of my diagnosis I had been married 4 years, we had no children. We did go on to have 2 children.

My symptoms at the time of my diagnosis:
- Bilateral leg weakness
- Severe loss of mobility
- Numb from the waist down including the girlie area
- L'Hermittes sign
- Vibrations/buzzing, pins and needles waist down
- Severe fatigue
- Bilateral hand tremors

When I was diagnosed there were no treatments for MS. The first treatment for MS was Betaseron which became available to the general MS population in 1993/1994, by Lottery. I had a lottery number but as my number came up it was decided, in a discussion with my Neurologist, to postpone using Betaseron. Over the years I have made the personal decision not to use any of the treatments for MS.

Exacerbations, one in each year;
- 1985 -- severe
- 1986 -- severe
- 1994 -- severe
- 2001 -- mild (in comparison with the previous ones)
- 2002 -- mild
- 2013

All of the exacerbations except for the last one affected my mobility and were relatively similar. The one in 2013 caused problems I had never had before.

Each person copes differently and, I believe, can be based on life experiences. It's very common to go through the 5 stags of grief when faced with a disease like MS. Some find Therapy to be very helpful when trying to cope and sort through the wide range of emotions.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

ErikaMo
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 11/3/2017 11:16 AM (GMT -7)   
Snoopy-

Thank you for this... all of this- TRULEY!

I have had a tingling/vibrating/pins and needles sensation whenever I put my head down for the last 10 years. MRIs in 2007 were inconclusive... and the Neurologist at the time noted L'Hermittes... but nothing more was done...

It was this "flare up" I guess - and my current scans- that locked in the diagnosis.

So essentially- it sounds like I have had this for 10 years... and I had the same active symptom for 10 years... and it was untreated for 10 years.

Right now- it sounds like I am lucky- as MAJOR as this all is to me- in comparison to yours- my symptoms are mild... my legs are weak but I can certainly walk.... My arms are weak but I have control of them. I have no vision issues. Right now I am going to call this a mild exacerbation... but then dang- what will a severe one do to me? Its just that this- this right now- how my body feels- is making me crazy- When Will It End? Days? Weeks? Months?
If this is how I handle a mild one- what will a severe one be like?

I am talking and asking questions in circles- I know... and I fully understand everyone is different.... just trying to get some perspective yet I guess.

I take comfort in seeing the gaps in your Exacerbations.... years at a time. That means without symptoms- right?! In those years--- do you feel TOTALLY back to normal or are there always "effects of the MS"? The years that you did have an exacerbation... I assume you were treated with Steroids and then just let nature take its course?

I haven't had the discussion on my treatment plan... I am being told our insurance covers Tecfidera? But I am also a strong believer in a healthy lifestyle... exercise and good nutrition. I would RATHER not be on meds if at all possible. To be determined I guess....

Thank you again- for all you have said and done for me already.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 226
   Posted 11/3/2017 2:12 PM (GMT -7)   
Oh ErikaMo, don't take my example of no medications for yourself. The recommendation of Neurologists as well as the National Multiple Sclerosis Society is to use one of the Disease Modifying Therapies(DMTs). If you aren't on one then Neurologists consider your decision the wrong decision. However, there are those that don't use the DMTs for a variety of reasons.

Exacerbations can be complete (no symptoms) or partial (residual symptoms) with partial being the most common. My legs to this day has always been my biggest struggle. Years ago the options for exacerbations was either oral Prednisone or ACTH (now known as Acthar Gel). It is possible for exacerbations to be worse and/or different from a pervious one

I used oral Prednisone for 2 of the exacerbations and those two exacerbations would start to improve in 6 weeks, but my recovery took much longer. The other exacerbations I waited out and it would be 6 weeks before my symptoms would improve and recovery would take longer. What I mean by recovery is I still had to go through the same process with walking as I did the first time. Man! I would get so angry going through this again but that anger actually helped push me to keep trying.

I strongly believe in exercise, had I not kept walking/exercising there is no doubt I would have been in a wheelchair very early on. Exercise can help with pain, mobility, endurance, balance, spasticity and fatigue... as long as you don't overdo it. I currently have, in my home and use; an Elliptical and a 4 station weight machine. I love weight training.

I want to stress that exercise needs to be started very slowly and increased very slowly.

A word on steroids although I know I am repeating some of what I said in a previous post. Steroids will not change the course of the disease or stop the disease. Steroids might shorten an exacerbation. Steroids are not used to treat symptoms, there are symptom management medications for that. Not all exacerbations require steroids. The more steroids are used the less effective they become. Steroids come with short term as well as long term side effects.

When you had MRIs did they do the spine? Your symptoms, leg weakness and especially Lhermitte's indicates spinal cord involvement. Lhermitte's sign is not exclusive to MS but when related to MS Lhermitte's is due to cervical spinal cord lesions.

ErikaMo
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 11/3/2017 4:09 PM (GMT -7)   
Yes- brain, neck and spine. I do have cervical spine lesions. Demyelination is also a word I am hearing often....

I appreciate all your input; and may continue to reach out if that’s okay?

Thank you!

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 226
   Posted 11/3/2017 4:20 PM (GMT -7)   
ErikaMo said...

I appreciate all your input; and may continue to reach out if that’s okay?


Of course! That's what we are here for smile
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