New MS Diagnosis

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 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.

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.

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 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

Noah2112-

Thank you for your comments. I’ve learbed a lot since my diagnosis in October. I have a more positive outlook now
I wish you and your Aunt well!