New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Hachi
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/4/2015 1:47 AM (GMT -6)   
Hi after years of tests and seeing various specialists my gp started me on a course of steroids as my neurologists report to her suggests he is certain I have MS although I have not had my follow up with him after my MRI. Although I've had my own inklings' on the matter I was fairly certain it was my P/A that was causing my problems. I have had a terrible 3 weeks with Urinary infection followed by cold sores and mouth ulcers. I only went to the doctor as my right leg wouldn't do what I wanted I to do and is very heavy and dragging. I would love any advice on the matter. There's much more that has lead to this but to much to bore you all with.. I.e. numbness, fatigue, eye problems, weakness, loss of grip,sensation,dizziness,bowel problems,over active bladder,electric feeling inside arms and legs and more.. Thanks for taking the time to read this.. 💕

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 8/4/2015 9:52 AM (GMT -6)   
Hi Hachi,

Welcome to the board. I'm sorry you find yourself looking for answers. It sounds like you may have MS. Be sure to get and keep records of all your tests (MRI, blood work lumbar puncture) and etc.

You may need second and perhaps 3rd opinions. You may also want to find a neurologist who specializes in MS. Take care to pay close attention to your symptoms. especially make note of how you feel a few weeks after your course of steroids. Oral steroids are often prescribed for many inflammatory issues. For MS, typically it's IV steroids and in very high doses. You may not respond dramatically to the lower dose oral steroids.

By the way, mouth sores aren't typically a sign of MS.


Keep us posted. Please ask any questions you may have.
Diagnosed with MS July 2006

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

Hachi
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/4/2015 11:39 AM (GMT -6)   
Thanks for your reply I'm grateful for any information about MS and its progression. I have coeliac diagnosed over 20 years ago and around the same time I started to lose sensation in my fingertips but never thought much of it. Then I couldn't feel my nose this lead to a diagnosis of pernicious anemia which just so happened by change on mentioning it jokingly with my coeliac consultant. I'm now 39 and following the birth of my first child in 2006 I have hardly had a month without something. I've been hospitalized for bowel problems I've had bladder retraining and they discovered I've an over active bladder no one can explain why this is happening. I've fallen over both times where when I was getting something from lower cupboards. My coordination is shocking and I've trouble grasping objects tightly and lifting even a full kettle is a no no.. At present my right eye is painful and moving involuntary although its not visible to anyone. My biggest problem for me is the severe tiredness I get from doing the simplest things. I was convinced it was all PA related so its come as quite a shock hearing my gp tell me she suspected for some time that it was MS and now after all this time and with having neurologists report she's given me Dexamethasone 500mg. I'm frightened about lies ahead I've always worked in the catering industry but haven't been fit to since May due to been unable to carry out my duties safely and as efficiently as I used to. I kept tripping and dropping things and every time I had to bend down to retrieve something or even brush the floor I was dizzy and my balance was greatly affected.. I tripped constantly and burned myself due to not been able to feel things properly.. I'm still not entirely sure what to think maybe because I don't wont too.. I cannot imagine my life without working.. I've always been very active and still am but she this comes on it floors me and I feel I'm in someone else's body.. I hate it!!!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 8/4/2015 12:40 PM (GMT -6)   
There are some that say there may be a connection between celiacs and MS. I have both. I was diagnosed with MS first. It may just be that being susceptible to autoimmune issues makes it easier to develop both diseases.

My MS symptoms improved slightly after several months of being gluten free.

When will you see the neurologist next?
Diagnosed with MS July 2006

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

Hachi
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/4/2015 1:34 PM (GMT -6)   
I live in n.ireland and we have only one MS specialist and I was meant to see him again this month but his secretary says he is a year behind with appointments and those appointed for August now been delayed to September or later... I wish I had all the answers now and be able to move on and live a happy and fulfilling life and enjoy my children and husband regardless of my diagnosis. Its the limbo I find hard, I know I can move on and not let this ruin me but I really do need help with my on going symptoms and pain.. How was your experience and how did u get diagnosed, hope you don't mnd me asking.. 💕

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 8/4/2015 5:11 PM (GMT -6)   
Hachi,

This is why I am here. Please ask as many questions as you need. I was diagnosed very quickly. I was and am still a school teacher. I teach 5th grade. I had an episode of vertigo that lasted 3 weeks. I went to the doctor and he thought it was an ear infection. It continued to get worse. At the three week mark, I was hospitalized because I could no longer walk due to the vertigo.

I was admitted for 4 days. An MRI was done. It took a few more weeks of testing but eventually MS was the diagnosis. I was referred to UCLA MS clinic and officially received the diagnosis.

A few months later, I started on a med. therapy. I have symptoms that I live with everyday. They don't ever go away but it's managable. I still have chronic vertigo and balance issues. I have some vision problems. I have lots of numbness in my lower legs.

I can have some fatigue issues as well. Life is different for me now but I have found ways of dealing with it. I've been on the same medication since the beginning. It seems to have helped.
Diagnosed with MS July 2006

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

Hachi
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/5/2015 4:10 AM (GMT -6)   
Thankyou for replying. That's amazing that you still teach it gives me hope that I might get sorted out and be able to return to work soon. I was so off balance and dizzy yesterday and my leg was not functioning properly at all. Is it common to have one side affected more so than the other? Its usually always my right side, face, eye arms and leg although I've recently started getting a band of numbness around my knee and my left arm has gotten weaker and pulsates on its on accord. My leg was so terribly painful last night that I couldn't sleep. I finally got relief after taking painkillers and amitriptyline and managed to get a few hours sleep. I'm not entirely convinced it could be MS as my GP says you don't normally get pain but I can assure you I do but only when my leg or arms aren't moving freely.. Do you ever experience a sun burn like heat all over your back? I've noticed that I get this now every time my leg plays up it's the weirdest feeling and I thought at first I had shingles as did my GP but this was not the case.. Anyways I could talk all day looking for answers.. Have you any family members with MS.. My mums cousin has it in curious to know if there could be a genetic link too.. X

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 8/5/2015 7:46 AM (GMT -6)   
Your GP doesn't know about MS. MS causes pain for MANY patients. I have had issues with nerve pain. It causes a sunburn like pain in my lower legs that would worsen as the fatigue of the day set in.

I had to deal with that pain for many long months after a particularly bad flare that left me with a lot of numbness in my lower legs and feet. That was a few years ago now and that pain has since stopped. The numbness has remained as a residual symptom.

No one in my immediate nor in my extended family has MS. MS does appear to be slightly genetic. There seems to be a genetic link that predisposes someone and then there needs to be a trigger; extreme stress, an infection, a pregnancy, a bad accident or injury. It's a very poorly understood disease.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 1:06 AM (GMT -6)
There are a total of 2,973,988 posts in 326,198 threads.
View Active Threads


Who's Online
This forum has 161200 registered members. Please welcome our newest member, tremblayarlena.
269 Guest(s), 3 Registered Member(s) are currently online.  Details
Girlie, Stoutcee, tremblayarlena