New, expecting a diagnosis next week, questions

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helpplease
New Member


Date Joined Feb 2017
Total Posts : 2
   Posted 2/21/2017 3:11 PM (GMT -6)   
Hi all

I've just found this forum and am wondering if anyone can offer any advice. I am due for an MRI next week to investigate some symptoms consistent with MS: tingling, numbness, pain, vision deterioriation, atrophy in both legs (but more severe in one), ms 'hug', remissions and flare-ups, severity linked to heat, weakness, fasciculations, hyperreflexia, concentration difficulties, walking difficulties, and fatigue. (ALS was another concern of mine although symptoms seem more consistent with MS).

I've had some of these symptoms 'confirmed' by specialists - ie reflex tests, atrophy, clinical weakness, etc, hence the referral for an MRI. However, I do suffer from hypochondriasis and because of this, medical staff investigate symptoms and refer for tests where necessary, but opinions on possible diagnoses are not given. They miss out "well it looks like xxxxx so we'll test" and go straight to "let's test and get a diagnosis". But we all know MS is a strong possibility.

If I'm honest I think I have had symptoms for years, perhaps as long as a decade. I'm aware of my own hypochondriasis and as such try to overcompensate by NOT running to the doctor the moment I experience something. But it's fair to say I've had tingling in my legs for many years and it comes and goes, worse in summer. I had MS in the back of my mind for a while, even mentioned it to my husband years ago, but he laughed and we dismissed it as hypochondriasis 'it's probably anxiety' and didn't seek help because I was concerned about a 'cried wolf' situation as I've had other issues (diagnosed skin cancers) seeing me at the doctor a lot. Anyway, it's only over the past year or so things have become worse and definitely 'real'. So I think my 'type', if I have it, might have changed from one with flare-ups and remissions to one that is progressively getting worse.

Has anybody else been in that situation where a diagnosis was confirmed so long after initial symptoms? I just don't know whether to tell them that I think I've had it for years - they can have no way of knowing and what happens if I'm wrong? How does the 'type' change treatment, (if at all, given that it's clear what I have is progressing right now). I've looked at little charts on line but then get too anxious and tell myself to wait until I am diagnosed by a professional. How common is it to have symptoms that come and go for years and then all of a sudden get a rapid progession that lasts for months?

If you've read this far, thank you. I have another question: If I do get a diagnosis of MS, what does everyone consider the most important question to ask medical staff after getting the diagnosis? I have three in mind. Mostly, I want to know what the chances are my kids will get MS. Question 2, how long I can expect to be able to continue to walk my dogs for - I can no longer run with them and walking is tough. I doubt they can answer? Third, I'll ask if they can give me any medication to stop the symptoms at night so I can finally sleep. I'm shattered.

What else should I ask?

Many many thanks in advance.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 243
   Posted 2/21/2017 6:07 PM (GMT -6)   
Hello helpplease,

helpplease said...
I have another question: If I do get a diagnosis of MS, what does everyone consider the most important question to ask medical staff after getting the diagnosis? I have three in mind. Mostly, I want to know what the chances are my kids will get MS. Question 2, how long I can expect to be able to continue to walk my dogs for - I can no longer run with them and walking is tough. I doubt they can answer? Third, I'll ask if they can give me any medication to stop the symptoms at night so I can finally sleep.


It's not uncommon to have this disease more years than the person's actual diagnosis date. Symptoms can be subtle and easily brushed aside.

The most important question is whatever is important to you wink

MS and it's effects is different for each individual person. For this reason there is no way to know if a person will lose their mobility or not.

Treatment of Multiple Sclerosis:

Disease Modifying Drugs: These medications are to hopefully decrease lesion load, hopefully decrease the amount and severity of exacerbations (relapse, attack, flare-up). They may help with symptoms but no guarantee.

Steroids: To treat acute exacerbations. Not all exacerbations require steroids, exacerbations can resolve on their own. The more steroids are used the less effective they become and they come with short term and long term side effects.

Symptom management medications: There are very few medications FDA approved to treat MS symptoms, the majority of medications prescribed to treat symptoms are prescribed "off label." As someone I know once said, " symptom management medications just cover up the symptom(s) but doesn't make it permanently go away." Not all symptoms are helped with medications.

Exercise and maintaining core strength is important. Exercise can help with some symptoms of MS such as --- pain, spasticity, fatigue, cognition.

Best wishes on your upcoming MRI and I do hope you don't have MS.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

helpplease
New Member


Date Joined Feb 2017
Total Posts : 2
   Posted 2/22/2017 6:09 PM (GMT -6)   
Thank-you so much for the reply Snoopy, I do appreciate the time.

Yes, my understanding is that if I do have MS they wont be able to tell me much about the progression because it varies so much. (Perhaps I should refrain from asking when I'll no longer be able to walk, and cross that bridge when I get to it). Interesting about the exercise, I must remember to get a referral to a good physical therapist. I'm guessing if I am diagnosed they will have support staff and all sorts of information; just want to make sure nothing gets missed with taking it all in.

Thanks again and all the best.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 2/22/2017 6:52 PM (GMT -6)   
Hi Helpplease,

I'm sorry you find yourself having to consider a future with MS. Indeed everyone's progression is different. My first year after diagnosis, I had several flares and lots of progression. It was scary and frustrating. Soon, things settled down. It appears that my medication was doing its job. My overall progression has been slow since then. I still work full time. I can walk unaided.

I hope you find that you do not have MS. Keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 2/24/2017 10:53 AM (GMT -6)   
There are other ways of treating MS. You must decide how to go. Dr. Swank and Dr. Wahls have diets designed to treat MS.

Post Edited (eat2bwell) : 2/24/2017 10:00:57 AM (GMT-7)

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