Old 04-08-2012, 11:02 PM #1
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Default MS Diagnosis in question due to rapid progression

I am writing just the facts. Not my opinion or feeling. Just the facts.

March 2011 Charlie horse in left leg waking me at night

April 2011 strange gait and muscle twitching, fatigue, Brain MRI shows lesions atypical for MS, start using cane for assistance.

June 2011 MS neuro orders more MRI, Spinal Tap, abnormal exam. No spinal lesions, brain lesions atypical, spinal fluid negative.

July 2011 MS doc says no MS and sends e on my way

September 2011 Increasing muscle twitches, un verified weakness, start using rolling walker for assistance. Psychiatrist says not due to mental health issue. Symptoms are real.

October 2011 Neuro in hospital diagnoses MS based on atypical brain lesions and symptoms
Start steroid treatment that help fist three times but then stop

November 2011 Have to stop working due to symptoms, start using forearm crutches for assistance.

December 2011 left foot drop, referred to PT

January 2012 Physical therapist finds weakness in left side, arm and leg, refers to OT and orthopedic guy for AFO for foot drop. Has me trial Walke Aide.

Febraury 2012 Weakness continues. And weakness increasing. Cannot hold up head for long periods of time. PT and neuro order wheelchair.

March 2012 PT and OT verify that weakness is now consistent on both left and right side.
Right foot beginning to drop. Fasiculations in many prts of body. Air hunger begin sporadically in addition to very slight swallowing issues. Very slight. PT and neuro suggest scooter because of arm weakness and difficulty wheeling chair but hold off due to progression and possibility of needing power wheelchair for better support. PT says rogression too fast even for progressive MS.

April 2012. Physical therapist extremely concerned about progression of weakness and fasiculatins. Report this to neuro who orders MRI of brain and EMG. No reults yet.
Physical therapist mentions ALS.

Receive walk aide once approved by medicaid. Find that I cannot use it because since February, muscle fascic have increased and electric stim cause more fascics and imbalance.

Neuro tells PT it may not be MS. I know there are many other neurological diseases but I am here because I just need people who know to guide me.

Here we are. What should I do?
I do not want to have ALS.
I do want to know if it is ALS as I have four young children and am finding small changes or symptoms every few days.
I know that no one here can diagnose, but I am looking for advice based on your experience with ALS.

Have any of you, prior to diagnosis, known in your core that it was ALS?

I will see PT/OT tomorrow.
See neuro on Friday. I am going to ask him straight out to be honest with me and not leave me hanging. I am taking copaxone shots every night and f it is not MS, I don't want to keep taking them.

I apprecite you reading this. If I am completely off the mark, please tell me and I won't return and waste anyone's time.

Thanks,
Kerri
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Old 04-08-2012, 11:30 PM #2
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Default Re: MS Diagnosis in question due to rapid progression

Dear Kerri
You are going through so much, I am so sorry.
I don't really think anyone here can even give you a hint as too whether or not you may or may not have ALS. There are a great number of neurological illnesses that cause a plethora of symptoms like you are experiencing.
The EMG is an important tool in a diagnosis, as is the presence or lack of, UMN and or LMN signs on clinical examination.
Upper motor neurone signs such as, clonus and spasticity
Lower Motor neuron signs such as fasciculations and muscle atrophy.
Ms can cause both, but the EMG would give a clearer indication if your issues are ms related.

Unfortunately you really have to just hang in there and leave it to your neurologist to fugue out. May be you need to change medication if the copaxone is not being effective.

Asking your neurologist to give it to you straight is a good idea. That way if ALS is not even on the page, he can tell you and it will help a bit with your anxiety about it.
If it's MS, then you can discuss a new disease modifying
Not much help I am afraid. Sorry
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Old 04-09-2012, 12:31 AM #3
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Default Re: MS Diagnosis in question due to rapid progression

I'm glad you were able to get that out of your system. My advice to you is:
  • Stop reading here until after your neurologist appointment. It's only five days -- you can wait that long.
  • Don't come back until your neuro tells you that you have ALS or another MND.
  • The overwhelming majority of undiagnosed folks who come here "convinced in their core" that they have ALS don't have it.
And, to answer your question: no, I did not think that some minor weakness in my thumb was ALS. Others might have but not me.

Good luck with your neuro appointment. Let's hope that he tells you that your test results have ruled out ALS or other MNDs.
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Old 04-09-2012, 06:41 AM #4
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Default Re: MS Diagnosis in question due to rapid progression

Kerri Im so sorry you have been through so much and still have no diagnosis.
I have twitching a small amount of atrophy and atypical lesions on the brain and they say possible MS to me too . Im not sure its MS for me either and I know the waiting and not knowing is very distressing. That said I have waisted a lot of time stressing and its taken over my life for 3 years so please if you can try and keep functioning as best you can . You have to keep going whether its MS of ALS no matter what. The very courageous people on this sight with a diagnosis are an example to aim for but I do sincerely understand your distress. God bless you
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Old 04-09-2012, 10:29 AM #5
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Default Re: MS Diagnosis in question due to rapid progression

Thanks to those who were helpful. I appreciate it.
You were all once I undiagnosed and afraid.
It seems that one of you finds it very important to shoot down belittle anyone who is not in his same boat.
What a sad place to be.

For your information, my friend who passed from ALS last year said his first complaint was his thumb.
So maybe you shouldn't be so smug.

If he read my post to the end, he would have seen what I wrote about not coming back.
Thank you for the caring welcome to this forum. I'll make sure never to come back. ALS or not.
Have you ever heard of karma? You better start reeling in those bad vibes brother.
In the end, we all have to explain ourselves.
Peace
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Old 04-09-2012, 11:42 AM #6
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Default Re: MS Diagnosis in question due to rapid progression

Trfogey does his best to get people to not worry about a diagnosis of ALS unless they are told they have it (or probably have it) by a trained neurologist.

With a diagnosis of MS--it's possible you've in a flare--hopefully, that's what it is.

Try and remember that with ALS--things never come and go--they come and stay and progress--always. Keep your chin up and try to be patient, as hard as that can be at times.

Good luck with the appt. If they decide it's ALS--by all means come here. It's why the people are here. On this part of the board--the people that have been here a long time and contribute to try and allay fears do their best to discourage obsessing. It's easy to think the worst for many people.
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Old 04-09-2012, 04:13 PM #7
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Default Re: MS Diagnosis in question due to rapid progression

Quote:
Originally Posted by Kerri2012 View Post
It seems that one of you finds it very important to shoot down belittle anyone who is not in his same boat.
I simply gave you some good advice. Until a qualified neurologist tells you that you or a loved one has a motor neuron disease, there really isn't a need for you to be here.

Quote:
Originally Posted by Kerri2012 View Post
What a sad place to be.
The sad place to be is worrying about a disease that you may not have.

Quote:
Originally Posted by Kerri2012 View Post
For your information, my friend who passed from ALS last year said his first complaint was his thumb.
So maybe you shouldn't be so smug.
I know what I have and I know it will eventually kill me the same way it killed your friend. I made my peace with that fate a long time ago. But note: if that was an attempt to say something to hurt my feelings, it failed.

Quote:
Originally Posted by Kerri2012 View Post
If he read my post to the end, he would have seen what I wrote about not coming back.
Thank you for the caring welcome to this forum. I'll make sure never to come back. ALS or not.
I did read your post to the end. I also did not tell you that you were on the wrong track. I told you to stop reading here until your neuro appointment and not to come back iuntil your neuro told you that you might have an MND. You are doing the right thing by going to your neuro, but you are doing a silly thing by thinking that your physical therapist is in any way qualified to diagnose a disease as rare as ALS. It was a very unprofessional thing for that PT to have said. And now that you've told us about your friend who passed away from ALS, it's easy to see why you came here.

Quote:
Originally Posted by Kerri2012 View Post
Have you ever heard of karma? You better start reeling in those bad vibes brother.
Heard of it, don't believe in it, and don't worry about it. I just call things like I see them.

Your symptoms are suspicious and need to be reviewed by a neuro. The quick onset and the fact that steroid treatments worked to relieve symptoms in the past point away from ALS. Reading about a terminal disease that you might not have is bad for your attitude and your morale, so I recommend that you put it off until all the other possibilities are eliminated.

Quote:
Originally Posted by Kerri2012 View Post
In the end, we all have to explain ourselves.
Peace
Yes, we do. And I stand by the advice I've given and my hope that your neuro finds a cause other than ALS for your symptoms. Even if you don't like me, I would never want you to have this disease.

Good luck.
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Old 04-09-2012, 04:49 PM #8
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Default Re: MS Diagnosis in question due to rapid progression

Quote:
Originally Posted by Kerri2012 View Post
It seems that one of you finds it very important to shoot down belittle anyone who is not in his same boat.
I have read 100's of replies by "one". This is not a "boat" any well person would be looking to climb into voluntarily. What is "sad" is that so very many seem to feel the need to attempt to even when the knowledgeable professionals they have consulted are not sure if or yet. Your PT is not a knowledgeable profession btw. Tr is simply the last defence on the forum deck telling you and others you are best served by shoving off until you have no choice in the matter. If/when that is the case no one will be more willing to help you once aboard than he. That you see it otherwise speaks volumes about you not Tr.
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Old 04-09-2012, 05:14 PM #9
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Default Re: MS Diagnosis in question due to rapid progression

Kerri,

Is it possible that you have MS and your mind is telling you No? (I would take MS anyday over a death sentence.) I'm not being a smart @$$, the mind is a powerful tool. You also mentioned your friend dying of ALS, could his death exacerbated your symptoms? Just my 2 cents.
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Old 04-09-2012, 05:19 PM #10
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Default Re: MS Diagnosis in question due to rapid progression

Kerri,

I just read the headline to your post. So, you come here where we are not doctors wanting a second opinion? My suggestion is to find a neuro you are comfortable with. And ASK what their specialty is.
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Old 04-12-2012, 09:34 PM #11
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Default Re: MS Diagnosis in question due to rapid progression

TRFOGEY,

I want to apologize for my post the other day.
It was nasty and inconsiderate.
You are alright!

I don't know what I was looking for posting here and then being rude to those of you who had the decency to reply.

I appreciate your honesty and Iam not a mean person.

I am just confused and I am taking everyone's advice of just sticking to what the neuro tells me.

Again, I wanted to make sure I wrote to you especially because I knew what I wrote was wrong but I wrote it anyway.

You are right, ALS is not something I would like to have and I am going to stop considering something that isn't so until I have a reason to worry.

And if I do end up having ALS, I will definately come back here.

I wish you all the best.
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Old 04-13-2012, 06:43 AM #12
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Default Re: MS Diagnosis in question due to rapid progression

The waiting and not knowing for sure what's going on is a very troubling time. Good luck, Kerri. Please let us know what happens.
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Old 04-13-2012, 08:14 AM #13
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Default Re: MS Diagnosis in question due to rapid progression

Kerri I have posted a message on your profile , would love to talk if you want too best wishes margaret
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