Hello sllowe,
Thank-you So Much For Your Kind Words And Thoughts.Sorry About The Late Reply But I Have Not Been To Good The Past Couple Of Days. I Am A Lot Better Today Thou, May I Just Add That The Postings That I Have Recieved Has Really Helped Me To Understand Better The Symptoms And How They Affect Not Only Me But Most Of The Contributors To This Forum, It Really Is Very Interesting And Riviting Reading.
Once Again sllowe Thank-you And I Hope You Are Keeping Well In Yourself.
Kind Regards.
mackemuk.
Hi mackemuk,
We haven't chatted yet, but I wanted to say hello to you.
I'm glad you are a part of our forum family and I wish for you better days than what you've had.
Your in my prayers too,
SL
Quix, In Your Last Post To Me You Mentioned That You Had Some Sites That I May Be Interested In Regarding MS And Involment Of The U Fibres. Would You Kindly Give Me The Addresses Of These Sites Please, Thank-you So Much.
Hope You And All The Forum Members Are Keeping Well.
Kind Regards,
mackemuk.
Quix,Siddy1 And Grannyhotwheels. Thank-you So Much For Your Kind And Supportive Words Of Comfort. I Must Confess It Really Choked Me Up When I Read Your Replys, I Promise You I Will Keep You Up To Date With Events As And When They Happen ie Lumbar Punture And Diagnosis Etc. I Really Appreciated Your Input, All The Very Best For The Future.
Kind Regards.
mackemuk.
I'm sorry this is the news you are receiving. I wish it would have been better, but these guys know what they are talking about, trust me. Just remember MS is not a death warrent. It's not a disease you can fight either. Rather you learn to cope with it and know what it's gonna do before it knows. I realize you don't understand what I mean because I don't think anyone does but I know what I mean.lol
I'll be praying for you,
Carol
Your story just totally broke my heart. I had to go away and compose myself before replying. I am so sorry! I thought I had grieved enough for the Forum members and their stories but there is always somebody else around the corner. Every one of you is in my prayers at night.
Sadly, your symptoms are all too familiar to MSers. Most of them are classic for MS. If this isn't MS I don't know what is. As Quix said, VEP and LP tests are in order as the results will likely give the diagnosing doctors the last piece of the puzzle one way or another and then you can get some sort of treatment. You are still relatively young yet.
You are not being weak by telling your GP about your depression because in the context of MS it is an important part of your symptoms. Emotions are highly charged in MS. One minute you can be laughing and the next minute you can burst out crying.
Being British I know how the NHS works and it is a tough situation when you are in pain or needing some resolution because their wheels are very slow. I had forgotten just how bad they were. Over here if you wait 1-2 months it is a big deal.
I know it is easy to say but hang in there and know that this Forum is here for you. We have some great people who really care, and who do their best to help wherever possible. Just keep us up to date.
Marcie
I Also Forgot To Mention About The Heat Intolorence I Suffer,When I Have A Bath It Seems To Exaerbate My Problems.
Also At Times I Tremble Inside It Is Not Noteicible From The Outside But Inside I Feel Like A Quivering Wreck.
Do All Of The Above Symptoms Sound Familiar.
Kind Regards.
mackemuk.
Hello Quix Sorry About The Late Posting, Thank-you So Much For Your Informative Reply It Is Really Appreciated.Can I Just Confirm That The Lesions That Were Found Are In The Subcortical White Matter AND The Subcortical U Fibres, Also Some Were Inflammatory And Some Were Not.Regarding The Cognitive Dysfunction I Do Have A Very Poor Short Term Memory Like Recalling What Things Happened Yesterday And Remembering People's Names Etc, Also I Find It Really Hard To Express Myself (To Get My Point Of View Across,Finding The Right Words To Say Etc) I Also Get Depressive Times Which Last Anything Up To A Week,I Have Not Told My GP This Because I Don't Want To Appear Weak,I Know You Will Say That I Should Say Something But If I Do I Know That I Will Just Burst Out Crying.As For The Multi-Tasking What Man Can Multi-task! I Thought Only Women Can Do That LOL.
My Symptoms Started Way Back In 1995 With Visual Problems, To Give You An Example When I Was Driving A Car It Felt Like I Was Not Moving And The Oncoming Traffic Was Rushing Towards Me,It Was Very Disorentating,It Was Something Like Out Of A Horror Movie.I Then Began To Have Balance Problems Where I Was Very Unsteady On My Feet And I Used To Verve To My Right It Was Very Frightining,I Still Have These Balance Problems Despite Taking Serc 3x Daily But I Just Have To Cope With It.Over The Last Couple Of Years Or So I Have Been Getting Lower Leg Numbness In Both Legs,When Walking It Feels Like I Am Walking On My Knees It Feels Very Strange. I Also Suffer Pain In My Hips More So On My Left Side I Have Had Routine X-Ray Done Some Five Years Ago And It Showed That There Was No Arthritis.
There Are Times When My Skin Feels Very Sensitive More So My Left Hand Side (Arm And The Left Side Of My Face) I Would Even Go To Say They Are Sore To The Touch.
I Do Get Pins And Needles Both In My Arms And My Feet,Not Down My Legs, But I Would Say The Pins And Needles Give Me The Most Problems In My Arms,I Also Suffer Numbess From The Elbows Down In Both Arms.
My Rib-cage Feels As Tho It Is Being Crushed At Times More So At Night-time.
As For The Fatigue Well What More Can I Say,It Is Just Very Debilitating.
Another Point Which Is Very Embarrising Is, When I Think I Have Finished Urinating And Put Things Away Some-times May-Be Three Or Four Times A Week There Is Still Urine Leaking Into My Underwear. I Am Also Impotent Most Of The Time,I Do Get Prescribed Cialis Of My GP.
Regarding The Health-Care System In The UK, We Have Time Targets As To When You Get To See Hospital Doctors Which I Think At The Moment It Is About Three Months, But The Sad Fact Is That If You Have To Have Specialised Tests ie MRI,EMG,Etc There Is Indeed A Waiting List Of Twelve Months Or More And I Am Sure Other UK Contributers Will Back Up What I Am Saying.
I Am Sorry This Is A Long Posting But I Feel A Bit Better In Myself For Explaining My Symptoms To People Who Understand.
Kind Regards.
mackemuk.
Hi, sorry for the delay, but I needed to do some reading on the difference between the subcortical area of the brain and the subcortical U-fibers. I have found some very interesting articles and what I found is that the Subcortical U-fibers are the same thing as the immediately subcortical region. So....Based on that I can tell you that Multiple Sclerosis has a prediliction for these U-fibers. It is one of the areas which most often showes the MS lesions. The other areas are named in your report - the periventricular, the corpus callosum, the cerebellum (Infratentorial region) and the spine with the majority of spinal lesions showing in the cervical rather than the thoracic spine.
Having only lesions in the Sub-cortical U-fibers is a little unusual, but it does NOT rule out MS. Your MRI is consistent with MS. A couple of the articles I read show an association between lesions in the Sub-cortical U-fibers and cognitive dysfunction - poor short-term memory, difficulty with verbal fluency (finding the right word), spatial discrimination, multi-tasking, and problems with depression. Have you had any of this?
The rest of the report describes the osteoarthritis in your spine and the Carpal Tunnel Syndrome at the wrist.
The next steps in the evaluation for MS (I can't believe - not actually others here from the UK have said this - that you have had to wait a year for this testing. Incredible!) The next steps should be the Lumbar Puncture, but you also need a test called Evoked Potentials. There are three types of these and the one that is most often positive is the Visual Evoked Potential. If you are having severe numbness and tingling or pain in your limbs, the they might also do a SomatoSensory Evoked Potential to see if the neuropathy is central (in your brain or spine) or peripheral - out in the body. Perhaps they would also go ahead and schedule these while you wait for the LP.
What have been your symptoms over the years? When did it all begin?
I'm sorry I delayed getting to your post, but I had to find out what we were talking about. If you enjoy reading scientific articles I will give you the cites to a couple which describe the U-fibers in MS.
Quix
Quixotic1,
I Have Noted That You Have Said That The Subcortical White Matter Is A Common Place For MS Lesions, Can You Tell Me If The Subcortical U Fibres Are Commonly Affected As Well.
Kind Regards.
mackemuk.
Thank-you Very Much For Your Kind Comments,The Reason I Say A Slow Healthcare System Is Because I Have Waited Some 12 Months For These Tests And I Am Sure Other UK Contributers To This Forum Will Back Up What I Am Saying. But Apart From That I Really Appreciate Your Postings.
All The Best.
Mackemuk
Hi there, and welcome to the forum.
I'm not the resident expert on this forum by any means, but we all contribute in some manner.
So, what brought you to the hospital for all those tests?
Also, to re-assure you, it looks to me that they ARE in fact looking for something. Having MRI's of the brain, the EMG's and labwork is quite the work-up for a slow healthcare system. Once all these reports are in order, I suspect you'll be a bit more in the know, and hopefully ahead of the game in terms of diagnosis.
Again welcome, and hope you feel better soon, I'm sure you'll get more comments soon, just oftentimes, like penn's post mentions above, we feel we can't interpret everything and may hesitate to post immediately.
SL
Wish I could help you, but I can't. Give it a little time - the folks who know what they're talking about will jump in. I know how hard it is to wait when you don't know what the "medical-ese" means.
There are folks who've no doubt read your post, but. like me, are not qualified to answer you. I just wanted to let you know an answer will be coming. Try to hang in there until one of our resident experts pops in.
God bless,
Penn
Come On! Somebody Say Something Please I Am At My Wits End.