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Posted 12/29/2007 10:17 PM (GMT 0)

Hello to everyone, I think this is a great way to share information. I have been reading a lot and am trying to get a handle on things. I haven't been diagnosed yet, nut those two little letters keep popping up. I have spinal problems also, but there is something else going on too. I have about 99% of symptoms for MS but the doctors are extremely hesitant to label it. I had to quit work last June, June 19th 2007 to be exact. Due to the fatigue, mental confusion, memory loss and momentary loss of the use of my hands and arms, about 6 times. I guess it doesn't really matter there doesn't appear to be much they can do for it. I have recently developed nygstamus, and have an appointment with a neuro opthalmologist next month. By the way, does anyone have an idea about how high the divorce rate is when a person first gets this diagnosis?

Posted 12/29/2007 10:26 PM (GMT 0)

I was married for 13 years when I got my diagnosis.  We'll be celebrating our 40th anniversary in June.

While indeed divorce can be high when one of the partners develops a chronic disease like MS, I personally suspect that there were other problems in the marriage prior to a diagnosis, and the MS is the "straw that breaks the camel's back", as the expression goes.

Certainly not everyone who gets MS gets so severely impaired that they become a major burden on their spouse or family.  MS is not a terminal illness, and many folks continue to go about their lives for a very long time with minimal or manageable disability.  I've had MS for 25 years, yet live in  my own home, cook, clean, do the laundry, take care of my husband's needs, travel, shop -- from a wheelchair, to be sure, but otherwise I live a reasonably normal life.  I'm very sorry you've had to quit your job. Have you applied for SSDI?

Posted 12/29/2007 10:28 PM (GMT 0)
Yes I have, about a month ago. Haven't heard anything yet.

Posted 12/30/2007 11:51 AM (GMT 0)

Shrek said...
Yes I have, about a month ago. Haven't heard anything yet.

It takes a very long time these days to apply, to hear anything from the social security department, and to get paperwork back and forth.  I hope you've kept copies of everything submitted to them, both your application, any medical records, etc.  And don't be surprised if you're turned down at the first application, and have to go through the appeals process.  Keep us updated as you work through this; several folks here have some experience with this and are willing to help talk you through the process. This will take MONTHS, by the way, even YEARS, so try to be patient!
Posted 12/30/2007 8:43 PM (GMT 0)
Hey Shrek

Welcome to the board! I'm so sorry for u'r illness and possible MS, but am so glad u've found us and are posting. Best wishes with the SSDI. As Uppitycats said, that can be a very long process. Just keep pushing tho. Same with the MS diagnosis process...long and tidious...but don't give up on finding an answer to u'r health problems. I'm so sorry u've had to stop working, but hang in there strong friend and lean on those u can. U"ll make it thru this and u'll get u'r answers. Feel free to ask as many questions as u have and we'll all try to do what we can to answer them. Also, we have live chats on Monday's at 6:00pm (cst) each week. I hope u'll get to join us! Again, welcome to the board!
Posted 12/31/2007 3:20 PM (GMT 0)
Thanks everyone. I expect to be turned down by the SSA, yes I did keep copies of everything and dates applied etc... I will get a lawyer, but if there was a chance, ( even slim to none ) to obtain benefits without losing a chunk of my money I wanted to try that first. This will no doubt be the biggest challenge of my life, even if it turns out not be MS. However if it isn't MS I can't imagine what it would be.
Posted 12/31/2007 3:35 PM (GMT 0)
New years eve, 2007

 

Hello Shrek:

 

I applied and was approved for SSI@ 7 years ago.

 

I applied by myself, and was approved on MY FIRST APPLICATION.

 

I am in the vast minority, though.  Great luck to you.

 

John

Posted 1/3/2008 5:03 PM (GMT 0)

Hi Shrek ......I read your posts, and the one thing that I did not see - were MRIs....have you had any done.  It took three MRIs before it became conclusive that I had MS.  the first two did not show any, but then I went during times when I was feeling good, and the bod had a chance to repair the myelin - and with that did not show any lesions.

When I went for the last MRI, my hands were numb and tingling, and was experiencing the electric shock feeling when I bent my head forward. this time lesions did show up, it was quite plain and clear that I had MS...

I know what you are talking about when you say confusion, that brain fog feeling, extreme fatigue - etc....now that I look back I have had this for quite awhile, and I remember asking myself once - why am I so tired all of the time.  When I get really tired, it feels like my whole body is shutting down - my head gets foggy, cant think straight, loose my cognitive skills, and my fingers seem to tingle more than ever. 

I am fortunate enough that I can take breaks at work, and when i feel myself shutting down, I just close the office door, and close my eyes for awhile, sometime even nap!!!!!  I nap instead of going for coffee in the morning and afternoon.  this seems to eliminate that crushing - I can't think straight anymore" symptom.  Fortunately for me, my job is very supportive, and allows me to have some down time - which is sooo great..

Gary

Posted 1/3/2008 6:24 PM (GMT 0)
Had a head MRI in August and nothing was showing up, (this was the only one so far). Back in June when the symtoms were really in full swing, I wound up at the ER with chest pains/pressure, they kept me approx. 14 hours because my CK levels were high. My heart was ok and no circulatory problems at all. My CK levels are still high. But thankfully my symptoms are fading, my eyes are actually getting better just within the past two days.
Posted 1/3/2008 6:33 PM (GMT 0)
P.S. They tried me on Provigil, it didn't really help my fatigue but it did help my thinking processes and memory and for some unkown reason my headaches. It doesn't help as much as it did before, but I'll take what I can get. (it does have a very strong roller coaster effect...a high and a low...) At least for me.
Posted 1/3/2008 6:35 PM (GMT 0)

Hi there, thanks for the post, and I am glad that your symptoms are fading away. But with relapsing - remitting MS (if in fact this is what you have) this is exactly what happens - which on the flip side is good, as again if you were to have MS, it is in the early stages.

I had three MRI, it was only the last one that showed the lesions on my spinal cord and brain stem.  The other two times that I had them, I was actually feeling pretty good, which now in retrospect, tells me I was in remission, and when in remission, this allows time for the myelin sheathing around the spinal cord to repair, and hence, no lesions would be present.

When I had my last MRI, I was (and still am) having an MS attack, making my hands and toes goe tingly and numb. This time, because the MS is active, the lesion were present.

I would not only press to have another MRI when you are feeling symptoms again, but this time not only the head, but down the spinal cord as well.

Cheers,

Gary

Posted 1/3/2008 9:53 PM (GMT 0)

It is my understanding that most people who have MS, have lesions that show up on an MRI consistantly.  While there may be some repair or re-myelination during remission, usually damage caused by MS is permanent as far as an MRI is concerned.  My lesions show up whether or not I am flaring.  If I am flaring the contrast dye reveals them as very bright spots.  If I am not flaring then those spots are still there but not as bright.  Indeed, sclerosis means scar. 

The sheath is a fatty covering of neurons.  location of lesions is considered important in diagnosing MS.  Neurons that are damaged by MS are usually in the white matter of the brain or spinal cord and not normally in the gray matter.  The white matter neurons are responsible for sending messages to and between gray matter portions of the brain and spinal cord.  

Love and prayers,


Posted 1/4/2008 3:28 PM (GMT 0)

Good morning and wow, Gretchen.... you certainly are a wealth of information.

Have a nice day

Gary

Posted 1/30/2008 1:25 AM (GMT 0)
Beau2006 is right i wish the doctors would read some of these!


Shrek :)
Posted 1/30/2008 3:28 PM (GMT 0)

Good morning, again, I must add that I had a total of three MRIs, it was not until the last one that any lesions showed up.

My neurologist advised me that this was common, especially if it has been a long time in between relapses, as during this time, the body has time to repair the damage that has happened to the myelin sheating. 

When I went for the last MRI, I was feeling not so good, tingly, numb, etc, and this time, and the first time, lesions showed up - 10 of thm to be exact.  A year before, there were none.

Have a nice day,

Gary

Posted 1/31/2008 7:21 AM (GMT 0)
Thats really interesting Gary. It gives me the courage to continue to pursue a diagnosis. It is just so hard to be told "Your brain looks fine" when your body tells you otherwise.
How do other people in Limbo Land feel about this?
I did post a recent question asking others to respond re - early MRI's coming back clear and subsequent MRI's showing damage leading to diagnosis, but only got responses from a couple of people. I'd like to know more about why this seems to happen so often.
Perhaps some people are very sensitive to early symptoms, or yet maybe it takes an extended amount of time for the body to actually show the scarring of demyelinisation. I don't know.
What do others think or what have others been told by doctors/researched for themselves?
Annie
Posted 1/31/2008 12:31 PM (GMT 0)

anniebooboo said...
Thats really interesting Gary. It gives me the courage to continue to pursue a diagnosis. It is just so hard to be told "Your brain looks fine" when your body tells you otherwise.
How do other people in Limbo Land feel about this?
I did post a recent question asking others to respond re - early MRI's coming back clear and subsequent MRI's showing damage leading to diagnosis, but only got responses from a couple of people. I'd like to know more about why this seems to happen so often.
Perhaps some people are very sensitive to early symptoms, or yet maybe it takes an extended amount of time for the body to actually show the scarring of demyelinisation. I don't know.
What do others think or what have others been told by doctors/researched for themselves?
Annie

You said: "...or yet maybe it takes an extended amount of time for the body to actually show the scarring of demyelinisation". That's correct. Sometimes in very early stages of a demylinating disease such as MS, the body (in this case, the brain) heals, the scars (sclerosis means scars) heal over, and won't show up on an MRI.  As the disease progresses, the sclerosis becomes visible.
Posted 1/31/2008 12:47 PM (GMT 0)
Thanks Uppity,
Maybe i am in early stages. Strangely though, in hindsight, I believe that my problems started about 12 years ago after the birth of my first child when I had painful tingling across one side of my back. It was at times unbearable. The dr didn't offer any explanation and as time wore on, the painful tingling fairly well abated. I had to live with it. I am now left with complete numbness in this region and the occasional tingle. I find though, that these more recent (18 months) symptoms are really interfering with my wellbeing - exhaustion on one side of the body, "purring" sensation in my feet, burning feeling in one arm, twitching fingers, tingling post exercise. It's just all too bizarre and I'm just wanting answers.
Annie
Posted 1/31/2008 3:45 PM (GMT 0)

Hi there, nd good morning - and as per above, that is why I think it is important to persue yet another MRI down the road, to see if anything does develope. 

I am like you, I had the symptoms way before anything showed up on the MRI - and then all of a sudden, there were the lesions.

so just because your MRI was clear the last time, does not mean that it will be clear the next time.

Have a great day

Gary

Posted 1/31/2008 4:57 PM (GMT 0)
Hey Annie

Well u bring up a good question...basically how accurate is the mri? I didn't respond to u'r thread before because i don't have that scenario to address...but in my recent doc visit the doctor said something that i've only 'heard' or read online...never ever heard a doctor say before. "MRI's can be a good tool, but they can be wrong. Just because u don't see a lesion, doesn't mean ms isn't there." Hummmm....wooosh....that was something else to hear. I knew that as much i could just from others having said it and having read it, but still...there isn't a LOT of resource material that says that. So hearing it from a doctor was a bit unsettling. So, that said, the scars can heal as Uppity said and u can have a clear mri...and still have ms. So, yes, if u'r considering a new set of mri's or u'r doc's suggested it..or its just been awhile and u want to be sure...do it! Take good care of u'rself friend and do what is needed to get the best care u can.
Posted 1/31/2008 5:55 PM (GMT 0)

I've said this in another thread, but it probably bears repeating here:

Indeed, MRI's are only a tool.  I've seen very often (and it's happened to folks here) that ONE doctor looks at an MRI and sees nothing; another doctor looks at the same MRI and sees lesions.  Or one doctor sees "something" and calls it "inconsequential"; another sees the same "something" and decides it needs further investigation.

Because MS is still a "diagnosis of exclusion" - meaning they have to rule out so many other things before deciding on it as a diagnosis, and because there are so many other disorders and diseases that mimic MS...

a doctor has to take the results of the MRI and combine that with what he knows about the patient, about clinical signs the patient has, about symptoms the patient has reported, combine all that with other test results (like spinal taps), to come to a diagnosis. Which is why it is indeed, sometimes, a long process, and a lot of "wait and see what develops", before a doctor will put a label on it.

Posted 1/31/2008 6:24 PM (GMT 0)

Hi there, in my case, the MRI's are all viewed and then findings reported by the MRI Techs, and then the images and the written report is sent to the Doctor.  In my case, all three MRIs were view by the same doctor - and the last MRI - lesions were detected.

It was also the same doctor (my neurologist) who suggested that this is not uncommon, as if the MRI is taken during a long period of recession, there can be enough repair done to the mylein sheathing that any damage that was there is now not detectable.

That is why it is important that if you suspect MS, and hve the symptoms, keep on your doctor to do another one, just to keep on top of it.

Gary

Posted 2/1/2008 7:26 AM (GMT 0)
This is a timely discussion. The hard part is the actual bugging of the dr. I hate that I feel unwell and also hate the fact that I may have to swallow my pride and pursue answers. Some may see this as a sign of weakness/hyperchondria, but in truth, I am one of those people who seeks to problem solve. I need to know what is going on so I can fix it!
You guys are great. I could not be doing this without you all.
Annie
Posted 2/1/2008 2:26 PM (GMT 0)
Hey Annie

I agree...i HATE to sit in a doc's office and feel sure i'm the only one realizing there is something really wrong here. I've been fortunate in that my docs have not acted as if they didn't believe me, but it was me who was my enemy on that. I felt that if i was the only feeling and seeing these probs...if there wasn't enuf to dx...then maybe i was not so unwell?? Well that's poo of course, but it is hard to escape that feeling. These symptoms are so hard to describe at times. They come and go sometimes before u can see the doc. They are not always visible to anyone. It is very difficult to prove anything is wrong sometimes. Hang in there tho...this is not weakness...it is inner strength and we just have to keep pushing on.
Posted 2/1/2008 2:40 PM (GMT 0)

Annie, in my view there is a huge difference between being a hypochondriac and pursuing answers to health questions  You should always feel comfortable questioning your doctor about decisions made on your behalf...nor decisions not being made.  You should always ask for clarification, and if you don't understand, ask again.  And if you don't feel the doctor is listening to you, or answering your question such that you understand, then it might be time to seek a second (or third or subsequent) opinion.

And you should be sure you understand what the doctor means when he says something. Like folks will often feel like they're being ignored or "brushed off" if the doctor says something, "watch and wait and see me in 6 months" -- when in fact the doctor is expecting indeed to see the patient at least at the 6 months time, but sooner if there is something wrong.

And sometimes doctors don't have the answer immediately, and do need to see a patient over time, before enough signs and symptoms occur to be able to figure out what's going on.

And of course people want doctors to fix whatever is ailing them. And the hard reality is, there are diseases and disorders that cannot be fixed. MS, and many other neurological problems, aren't fixable.

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