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  #1  
Old 05-17-2012, 10:52 AM
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New normal New normal is offline
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Late Onset MS?

Just celebrated my 65th! Last year I rode my own motorcycle down the Oregon coast with my DH of 42 years. I now have tremors so bad that I have had to use a cane in public the last two weeks.

I am not diagnosed. I have had numerous symptoms and "episodes" for thirty years. My previous posts tell "my story".

I was referred to a MS specialist last December from a GI dr because of my odd bowel habits. She sd I was "probable" & scheduled me out a yr.

Then 6 mos later I developed tremors in my rt arm/hand. I went back to the neuro who again "interrogated" me like I was a terrorist......referred me to a tremor neuro to determine if my tremors are "physiologic or physochenic".

Meanwhile, a speech path sd I had tremors in my vocal cords, tongue, face, and the tremors have at times of stress taken over my whole body and I have halted stammering speech.

Perhaps I am overly sensitive, but I felt the tremor neuro also treated me a little indifferent until he did the physical exam. My knee jerk narrowly missed his crotch, which I swear was not intentional tho my husband still believes I was releasing some hostility.

I have numerous lesions, but not enhancing...neg EVP, neg LP. My GP says my history and symptoms are classic MS.

My tremor neuro dx with physiologic tremors and started me on gabapentin. Not Parkinson's. I got immediate relief. My brain felt better, and tremors improved. But not lasting. I am now up to 900 mg per day and most tremors are controlled. I still hv tremor in my Rt hand/arm but can walk.

Most of my other "MS symptoms" have resolved except extreme fatigue and muscle weakness. Finally, end of story. Apologize for length.

I have not posted in this area but realize that u folks are the best resource. I hv been researching late onset MS, even tho in my heart I believe I hv hd this since I was 30.

I have deteriorated dramatically in 10 months. I wonder if I should just go with this or continue to pursue a MS dx. I don't think there is much to do for me anyway at my age.
I hv a swim spa and spend hours in the water swimming or floating as it controls my tremors. I wonder if that is sufficient for tx, since at least it does not have side effects other than REALLY wrinkled skin.

I hv really enjoyed reading this forum...one,you all hv walked the walk, two, it is much more difficult for you to share.....three,you all have value --- we all learn from you..rant or no rant you contribute to all of us...

How great it is we have a means to hear from you who otherwise would not have a voice....I LOVE reading yr posts...maybe those closest to u don't recognize your value, but there is an entire world out here who really appreciate hearing from you....

So sorry for the length.....would appreciate any thoughts.....
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  #2  
Old 05-19-2012, 08:47 PM
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mjan mjan is online now
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Well HELLO and welcome!! I usually do not come on this senior forum, as..well.. I forget it is here!!! LOL

But yes I just got DX in 2010 after a long limbo trip. I WAS seeing a renown MS neuro from 2004 to 2008. He told me he never rules it out and cont to monitor me.
But his PA told me, NO, its not MS, but something is going on. When I had to leave their practice because my job changed and I had to see MDs from the new health corp I was working for. THEN this MS doc says to me, NO, you do not have MS!! well DUH!!

Fast forward to 2010, I have what seems like signs of seizures. I see a new neuro who DX me with seizures and puts MS back on the table. Long story short. I do not have seizures, but abnormal EEG more related to MS probably and yes, they DX me with MS. See another specialist and she shows me the lesions that are classic dawson fingers. I swear those lesions were always there, but I did pop out a few new ones. AND I have too many to count anyhoo.

Yes, like you I think it started mid 30s and definitely around 40s. I blamed everything on stress. My LP was normal and my MRIs well, have lots of lesions, but for long, "not the right kind"

So welcome, I have noticed you from Lynne's posts and limboland. What a great thread. You can feel free to email me anytime, if you like.

Warmly, Jan
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  #3  
Old 05-20-2012, 09:12 AM
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Thanks, mjan. Replies to myself.

I appreciate your comments. From your other posts, I can tell you are a compassionate caring woman with great capacity to understand and relate to frustration.

I realized after posting I may have offended some MS'ers who reside here. I started to imagine some responses I deserve:

"you are not yet diagnosed, and you want our energy?"
"you are dealing with tremors, when WE have real issues like not being able to get out of bed?"
"at 65 everyone has tremors"
"you are just now dealing with symptoms, when we have had this since we were in our twenties? Consider yourself lucky and move on with your life"
"tremors? If that was MY only problem!"

Yep, I felt I was whining up the wrong tree. I truly apologize to anyone who may have viewed my post as self absorbed complaints about minimum issues, when you folks are in the real heat of the battle.

But, I thought I would try to benefit from the wisdom of those who REALLY have run the race and are surviving -- perhaps not to the measure of your own expectation -- but surviving nonetheless.

Since my physical capacity has been lost so dramatically in 10 months, I have greater respect for those who have experienced the trials for years - for a lifetime. You are all heroes in my book.

Again, apologies for any offenses.
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  #4  
Old 05-20-2012, 09:33 AM
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Oh dear New Normal (luv your user name)= HUGS!!!

Folks actually said those things to you on this forum? Sounds like they were projecting their very real symptoms and losses onto you. But I am appalled by those responses. Loss is loss. And 65 does not warrant tremors.. please LOL.

Again, I am sorry for those responses to your post. Why would you ever believe you deserve them? Not at all!!

Here's a bigger hug and know that you can contact me anytime ok?

I live with one foot on limbo island.. I swear!! Since they FINALLY diagnosed me (with several disorders) I feel they will un dx me again!! I just live each day as it comes.

Hang in there dear~

Warmly, Jan
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  #5  
Old 05-20-2012, 11:36 AM
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No,no, no responses

No one responded to my thread, so I just IMAGINED what some were entitled to say.....

no, no, no one EVER has said any unkind comments... We just ain't that kind of people!
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  #6  
Old 05-20-2012, 11:46 AM
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OH.. a big WHEW!!! ( as I wipe sweat off my brow)
Glad to hear that!!

Yes for most, the responses are supportive. But trust, me some do not like the whining.. and others, like me, feel it is one of the reasons we come here to feel SAFE to express ..

Glad you cleared that up.. whew.

I am so sympathetic, that my, get this, inside head or brain tremors returned last night. It is soo weird.

I also have left handed tremors, but not until I am holding something.

Write me anytime, you are a hoot!!

Jan
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  #7  
Old 05-22-2012, 09:22 PM
owlnona owlnona is online now
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I was DX at 55 but neuro said I've had it longer. I'll be 67 in July & I've been on Rebif from the start. Was doing well untill I had an injection site reaction 2mo. ago that resulted in a case of cellulites. I had moved & had no dr.yet,long story, ended up in the Wound Care Center after 4weeks of strong antibiotics when the site would not heal.
The dr. there was wonderful & after 2 more weeks of packing the wound w/ Aquacel after having all the dead flesh cut out seveal times,the wonderful dr. has refured me to a new neuro where I now live, I go next mo.
I'm in a wheelchair,tho I can walk at home w/ my Rollator,
just around the house. So I guess you're never too old for this MonSter to hit you.
Keep us posted God Bless Nona Judy
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  #8  
Old 05-29-2012, 01:16 PM
chewinggum2 chewinggum2 is offline
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I can relate

I can relate so very much to your post. I am 54. I had many weird "episodes" since I was young but didn't consult a doctor.
When I was 46, the symptoms could no longer be ignored: face totally numb, visible muscle twitching, tremors, nerve pain, horrible fatigue, - etc. I finally went to a PCP who tested me for lyme. I was positive. After treatment, I still had symptoms. My PCP is biased toward lyme as his mom was mis-diagnosed with MS for over 30 years when it was lyme.
I have treated for lyme disease for 6 years, consulting "famous" lyme doctors and taken every medicine under the sun. I finally said ENOUGH and demanded more tests.
Further testing confirmed I have Lupus. Brain MRI shows only 5 lesions. All other tests are negative except spinal which I haven't had. The neurologist stated that she is "not a good diagnostician" (oh joy) but that my neurological exam was classic MS. However, she is discounting all of my lesions for age.
I forgot to mention I have to self-cath - which does not go with Lupus or Lymes. The neurologist can't explain it. The urologist keeps telling me MS.
It just gets so doggone frustrating!!!!!
I don't understand why doctors have this "magic" age where they deem MS to be an appropriate dx.
I had exactly 1 appointment with the neurologist and 1 letter explaining that I need one more positive test to meet the criteria and none of my tests were positive. No follow-up was recommended. Amazing!
Sorry for venting - just wanted you to know that you are not alone in your quest. As for me, I am going to continue pushing for answers. In fact, just had another brain mri this morning ordered by my PCP. Pending the results of this, I will ask to change neurologists.
It took 4 years to get the Lupus dx. For me, the great sense of relief that the symptoms are not in my head was worth the countless trips to doctors.

Robin
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Old 05-29-2012, 03:02 PM
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I Truly Understand!

I started symtoms in late teens early twenties. I did what I had to do to survive until my 50's. I had a major "episode" in my 50's. Then someone finally realized that I was not a hypocondriac(?) or a mental patient. I am now 64! I truly understand. You are in the right place. Those who have worse symtoms are glad that you don't. After suffering with this so long and not knowing, I am glad for you. I wanted to get on a motorcycle for my last birthday but did not have the strength to it. I will get on one before 65!
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  #10  
Old 05-30-2012, 06:41 AM
LuNell71 LuNell71 is offline
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I was diagnosed 1month before my 57th birthday, Sept I will turn 60. My first bad flare happened 7/96 however I believe I've had it most of my life. My dad use to call "tender Mary", my name is not Mary!! I just always felt like different. As an adult doctor visits just deemed me as stressed, anxiety, etc. My flare in 96 was dx'd as vertigo and my problems became more severe but still stress & anxiety until 7/09, saw my dh pcp & the first visit she knew immediately what it was. 3 more major flares, started tysabri 6/10 & no more flares but disabilities seem permanent.
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  #11  
Old 06-16-2012, 02:42 AM
ReeseOP
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Late-onset MS

Sometimes, It's difficult to secure a diagnosis of MS at advanced age because the demographic profile is higher incidence is mid 20's to mid030's. I was diagnosed at 52, and my expert neuro considered it incredulous.
Nevertheless, by following the McDonald criteria, I was diagnosed within 3 months time. Shame being, I was crippled by it within 3 years' treatment. You see, I had tolerated all the minor symptoms brought by MS for 20 years.
I now encourage all the young people I know who exhibit symptoms consistent with MS to not hesitate to get it checked out by an MS neuro. With MS, the best outcome is with early treatment, and time must not be wasted.
If you have doubts whether your neurologist is a MS speciializing neuro, contact the NMSS (1800fightms). They keep files of all MS specializing neurologists, and can email you a listing of MS neuros local to you.
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  #12  
Old 06-16-2012, 10:10 AM
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Thanks for replies

I really appreciate the replies. An update: tremors hv gotten worse. I am on 1200 gabapentin and still have facial tremors, and body tremors, and recently my legs are tremoring again. I hv appt with tremor neuro July 23.

I hv now gotten "gasps" that are involuntary big gasps of air as I go to sleep. My speech is still halting, & stammers. Cog fog is worsening.

Sadly, I have come to conclusion I will not ride my motorcycle any more. Only those who hv a passion for 2 wheels can relate...or those who hv to admit a greater force is at work. And I hv to submit to reason.

I kept thinking the tremors wd subside like a lot of the recent symptoms....looks not...this is the "new normal" for now. I am learning (mostly from this forum) that there is no "rhyme nor reason" to any of this...to constantly look for validation or seek answers is fruitless.

I am going to try to find that which treats my symptoms and discover a new life that conforms to my new me....a challenge since the new me seems to be ever changing....

Thanks again for responding....it helps so much to recognize reality when others see it also....
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  #13  
Old 06-22-2012, 05:25 PM
poppyfields poppyfields is offline
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Hello, New Normal

I just re-registered to this forum after a 7 year absence. I had forgotten how encouraging and welcoming everyone was. Glad to meet you, love your name.

I'm sorry to hear your sx are increasing. But am so glad you had such a good motorcycle trip before your MS became such a problem. See you around the forums!
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  #14  
Old 07-17-2012, 10:42 AM
tooliejane tooliejane is offline
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hello NORMAL

I can truly relate, I had the most beautiful purple cycle. Now a thing of the past.
I am 70 now, and was diagnosed in 07, after a 12 yr. search for the answers as to what was wrong with me. I was busy and ignored lots of symptoms for a very long time. Just last year I saw an MS specialist at Cleveland Clinic and was "typed" as PPMS.
I am sorry you have traveled such a long road, but hope you can find answers and help.
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  #15  
Old 07-23-2012, 01:10 AM
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Can you feel me leaning on you?

No sleep tonight anticipating tremor neuro appt in the morning. Re read the many responses from you....gives me comfort, and buoys me for tomorrow.

My tremors are bad, legs are weak, now use a cane in public. Fatigue is the worst adversary. You all understand.

Yet I feel like I am going to the principle's office in the morning accused of something I didn't do......I'm at peace with the disease process, but strangely, the office visit brings me more anxiety than anything else in my life.

Thank you all for sharing...I am taking a piece of u with me tomorrow...knowing my symptoms are real, and doctors are human, and it is what it is.

To those who are enduring...surviving...living with all the unknowns that lie ahead, thank you. You are with me....
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