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wendya432

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Learn about ALS
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Davison
Hi everyone. I just thought I would register and say hello. I've been reading and getting lots of useful information and links and thought I would introduce myself.

First of all, we are not sure exactly what is wrong with me yet, but it some kind of upper motor neuron problem. For about a year and a half or so I've been trying to find out what is going on. I started noticing weakness in my hands a few years ago but put it down to arthritis. I do have some osteo arthritis, but according to rheum nothing that would be causing the issues I'm having with weakness. Once I started getting to where I couldn't put any weight on them doing my yoga I figured it was time to start looking for some answers. I had also noticed some trouble with my legs and just a general fatigue with any kind of exercise or after a busy day.

So now here I am after seeing so many specialists and having so many things ruled out. First neurologist I saw said he thought I had MS, but MRIs came back completely normal except a little bit of wear and tear arthritis in my spine, but nothing that is interfering with my spinal cord or anything like that. After he saw the MRIs he said, no it's not MS, nothing I can do for you. And dismissed me.

My GP got me a referral to the Univeristy of Michigan neurology department. My first appointment there the neuro diagnosed me with cluster headaches, not trigeminal neuralgia which is a facial nerve problem that can happen with MS. I guess cluster headaches are different than migraines and not related to anything else going on. Just a coincidence.

He also looked over my MRIs and had the radiologist look them over and both declared they are fine. I had more labs done, and of course they all came back normal. I have over 30 printed pages of all the labs I've had done. Some pages have just a couple, some have 20 or 30. So I don't know how many things they have tested, but it's been everything from lupus to RA to multiple myeloma and everything else. All vitamin levels are fine, no heavy metals, no signs of anything at all really.

So, with all that being said... I have a clear UMN problem based on my neuro exam. I have babinski reflex in right foot (my leg that is worse) ankle clonus and patellar clonus in both legs, along with hyper reflexes. I have marked weakness. Cannot push against his hands with my thighs at all, very hard to do with my lower legs but I can. I think I also have clonus in my hip on the right side but he didn't test that.

I have weakness in both arms, can't really hold things over my head. Drying my hair is something I've pretty much given up on. It just uses up all my energy. I have clonus in my left arm. Wrist and elbow. (left arm is worse, luckily I am right handed)

I have spasticity, worse in my legs, but also in my arms. Sometimes my left arm will curl up and my wrist bends back. Feels like my arm is going to snap. My right foot will have the pinkie toe just curl up on it's own in a spasm. I have muscle crams/spasms in between my ribs. My trunk muscles are weak and I have a hard time sitting up right.

Lately things have been progressing quicker and many of these things are worse than they were 6 months ago. I feel like sometimes I get used to things how they are just in time for it to get worse if that makes sense.

I also have myoclonic jerks in my legs and arms at night mostly. I take a muscle relaxer (robaxin) but it doesn't really help. I'm hoping to switch it out for baclofen at my next appointment.

Lately I have had a lot of fasciculations in muscles that are already weak. But mostly they are just annoying. No signs of LMN so far, no muscle atrophy. But I have an EMG coming up next week. So we will see what that says.

For a long time we were on the MS line of thought, and that I just wasn't showing lesions, but after my second set of MRIs that is looking more unlikely. We haven't done an LP yet, I think that will come soon, but he wanted to run more labs and the EMG first.

So here I am with something wrong with me, and we don't know what. I have pretty much lost all ability to exercise (and I used to do a lot of aerobics, kickboxing, yoga, rock climbing, you name it). Now a 20 minute mild workout leaves me basically something between solid lead and jello. I also cannot stand the heat. It just drains my energy and makes me weak.

Also have trouble swallowing and slurring occasionally. Some emotional lability, but that hasn't been an issue too much since starting effexor. Very jumpy when startled. Have some issues with numbness not sure if that is related or not.

I'm only 31, which I know is young for PLS and I know PLS is rare, but it is still possible. I have 3 kids, 12, 6, and 4. I'm married and my husband works out of town a lot. Luckily I'm still able to walk (although I mostly walk on the side of my right foot now). But I'm afraid of how I'm going to manage if/when I get much worse.

Anything you can share would be grateful. Or any advice. :)

-Wendy
 
Hi wendy,welcome to the forum.
Your story sounds just like mine,i was 31 when i developed pls.
All your symptoms ect sound like me,they thought ms for a long time with me but after 7yrs and mri's kept coming back ok they decieded it was ruled out.
Pls tends to progress like ms,relapses then stable for a time.
I am now nearly 46,this is my 15th yr with this and i can still do things if i pace myself throughout the day,still walk a short distance with sticks.
Any questions just ask,we are quite knowledgable on this forum.
A pls expert is a pls patient....neuro's no zilch about pls.
Take care sweetie.
 
I am very sorry you have to deal with these symptoms you are describing.
I don't know what to say to you since apparently you still don't have a definite and final diagnosis.

The apparently have ruled out MS which has better prognosis than any MND variants out there.

So, wait for your next Doctors' appointments and for your next tests results to come out to have a clearer picture of what you really have.

In the meantime, try to see if you can get a wheelchair as it will make easier for you to move around without risking a bad fall.


Take care and do not hesitate to post back whenever you have questions that need to be addressed. There are many good folks here willing to help you and give you good advice.


Carlos
 
Thank you for the replies. I do have foot drop on the right side, but so far am doing ok walking. No wheelchair yet, but I'm sure it won't be too far off the way things are going. Although I do think I will go right to a wheelchair or scooter as my hands are too weak for using a cane or walker. I think they would end up just making things worse.

I got a letter today from my neuro with an appointment for a spinal tap for next week. I guess that will be another step towards ruling out MS or something else I guess. Then with the EMG a few days later there will be a lot of information (even if that just means knowing they are both fine) to help get towards a diagnosis.
 
Try asking your doctor to do a skin biopsy. This will let them know if your fasciculations are being caused by small fiber neuropathy.
 
Wendy,i dont think it could be pls if your hands are so weak already so early on in the desease process plus bulbar symptoms.....or unfortunatly you are a rare very fast progresser.
With pls /limb onset it tends to start in legs and takes several years to progress upwards.
Hoping for the best outcome for you.
 
Have you tried posting in the "Do I have AS" section of the forum?
 
I am so sorry to hear about your symptoms. I have Bulbar PLS which is very rare (started with speech). PLS generally starts with legs but it can also start with your arms. I have been following PLS groups for years and symptoms and severity varies widely. Some people can use a walker after 20 years and others need power wheelchair after a few years. Your symptoms seem consistent with PLS. Your arm symptoms are more severe than most. You are very young to have PLS.

Things I would recommend:
1. I think Dr. Fink is at the University of Michigan neurology department. He is a renowned expert in PLS. You can trust his diagnosis.
2. If they diagnose PLS see if you can get into an MDA/ALS clinic. MDA has been extremely helpful and understanding. They have loaner equipment. Ask Dr. Fink about this.
3. Don't be concerned about using aides - scooters, wheelchairs, bathroom aides. I was not a good example of this.
4. Make sure you have a Lyme test. I had a lot of bizarre symptoms early on and I was convinced I had a tick disease call STARI. There is no test for STARI but the bizarre symptoms went away.
 
like ollie, you sound like me....just be careful you dont make symptoms you read about fit....easily done........a diagnosed could take you sometime i guess.....good luck, johnny
 
Hi Wendy,

I'm also saddened to hear that you are experiencing the symptoms you relate above.

I was diagnosed with PLS in late 2010; although the neurologist I'm now seeing (very good, but conservative) tells me he suspects either PLS or HSP....of course, I'll never know if I have have HSP, because my insurance company will not pay for genetic testing and neither will I! My central goal/aim has been one of symptom control -- and all I can tell you is that (at least in my case) symptom control has been virtually elusive - and I imagine it will continue to be, until (if) someone finds a cure. My neuro tends to stay with this bizarre diagnosed. of "myelopathy" -- which means very little (other than that there is something amiss with the spinal cord), and this nothwithstanding the severity of my symptoms at times (it's funny how much one's sx. can vary in just one month -- then, you visit your neuro, and forget about half the stuff that actually went on)!

I must say that I agree with Johnny - as it relates to symptoms. Early on, I also had fasiculations; however, I learned that the fasiculations that are characteristic of ALS are exceedingly difficult to see (it is the deeper ones that require EMGs). So if you feel them, they're probably benign. I had scattered fasiculations on EMG, but none were clinically significant.

I have pain in my arms and hands, and of course, in both legs. Weakness in my legs. At times, I get short of breath (SOB) --- even when doing simple things like walking up a couple of steps or (believe it or not) when drying off with a towel -- I assume this to be so because my muscles become greatly overworked, and they're apparently starving for more oxygen (I have asthma, but no considerable respiratory or cardiac disease that would cause SOB to the extent that I get SOB).

I don't have footdrop; weakness and pain in legs are my two most bothersome sx....of course, so is low back and neck pain -- as well as pain in my arms, but these tend to vary (I don't mean to minimize any of these - when they come on, they do so with a vengeance). I'm tired of feeling like I do - when I have good days (less often), I take them for granted, and usually I overdo it.

I also have Babinski reflexes both feet - hyperreflexivity in the knees (terrific hypperrflexivity at that - I HATE it when neuros tap my knees!), and ankle clonus.

I'm on Baclofen (Zanaflex elevates my liver enzymes into the multiple hundreds - e.g., AST 308 and ALT 925 - be careful with Zanaflex/tizanidine for this reason) - I've reduced my daily dosage from 80 mg/day to ~40 mg/day. I probably need to increase again because of spasticity. One issue I don't see many mention is the "scissors-like" gait that is emblematic of HSP and PLS (due to hyper-spasticity). I don't have that, but I do walk (let's just call it) "differently".... :p

I hope you find peace within your sx. As an avid runner myself, I continue to struggle psychologically and emotionally with this crazy disease. I hate every minute of it. Even with the wonderful support given me by my wife, I continue to struggle. Don't forget that the mind and body work together -- depression and anxiety are aspects of UMN that must also be managed.

Mike

P.S. It's interesting that you mention your clearance from having M.S...my wife swears that I have M.S., given the way that I "cycle" -- about a month ago, I lost my sight - could only see shadows and very bright yellows and greens ---- my sight came and went like this throughout the day (we were at an amusement park with granddaughters). I recently had a CT scan (can't have an MRI because I have a SCS)....still no results back. Very weird series of symptoms THAT was. I wasn't scared, just confused about it (as I still am). Hope it wasn't a stroke....my neuro called it "visual obscuration"....generic for "I don't know what his deal was that day!"...
 
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Thank you for all the replies. I am a bit curious about HSP vs PLS. My family history is interesting. All on my dad's side: My grandmother was diagnosed with MS when she was in her 30s, back in the 1950s. Then in the 80s diagnosed with alzheimer's and parkinson's. She spent the last 10 years of her life in a nursing home and all I really remember is how stiff she was and that her legs were permanently in the scissor position. Not sure what all was done to diagnose her since it was so long ago. She passed away 15 years ago or so and they never did an autopsy. My dad's sister died last year at 59 with early onset alzheimer's, but as far as I know didn't have any spasticity or anything like that. My dad has two cousin's with MS, one who has passed away already. Also my sister has been having leg cramps and has hyper reflexes and ankle clonus. Although her Dr. won't do any further testing. Kind of makes you wonder if there is something genetic going on. Or maybe we are just unlucky in the neurological department!

Anyway, today I had my EMG. Saw 3 different neuros during it and had another neuro exam. Still have babinski and all that fun stuff. All they told me is that it went well and they would give the results to my neuro. They did say it looked great, so I don't know if that means that it is normal or not.

Next Monday is my spinal tap. Not looking forward to it, but the more info the better.

Is there a certain type of Neuro that deals with UMN issues? Currently I'm seeing a neuro from the general neurology department and his info says he is a migraine specialist. Not sure if this is who I will stay with or what....
 
Wendy, I don't know how far up in Michigan you live, but my neuro is in Findlay, Ohio, and I will swear by him. I saw him for the first time in October, and had my diagnosis by Christmas. He sent me to a neuro at OSU, and he confirmed. I read on here about how long people have waited for a diagnosis and I'm very grateful that he was so quick. It took about 6 months to get most of this under control with meds, but I am coping very well. I can't walk very far without getting short of breath, so when we go somewhere with a lot of walking, I use a wheelchair.
 
neuro 1 said I suspect als. neuro 2 said he wasn't sure, I think he knew, but asked if I wanted to go to als clinic in st Louis. of course neuro's 3 and 4 said sorry you have als I recommend als clinic for a diagnoses
 
I think you should go for a diagnosis. Don’t be late for it. If you have problem of ALS. Then give an effective treatment to it. I hope there will be no such problem occurs with you.
 
...
Pls tends to progress like ms,relapses then stable for a time....A pls expert is a pls patient....neuro's no zilch about pls...

_____________________

Hi Olly,

Above, you mention something that has been on my mind recently - and this relates to cycling in PLS.

May I please ask you about your experience with cycling in PLS? I agree very much with this, but do not hear nor read of many folks discussing this phenomenon. I, too, cycle from what seem to be very, very difficult periods (2-3 weeks in length) to marginally good ones (usually a week). I find it nearly impossible to work when I am in the midst of a really bad cycle.

The reasons I ask are: 1) You're so knowledgeable -- and as above, no one knows this stuff better than those of us who experience it day in and day out!; and 2) I recall reading - in a previous PLS post (over a year ago?) someone saying something like (paraphrased - and badly): "What? I've never heard that there are ups and downs in PLS" (perhaps the post was meant to be facetious - I am not clear).

What has been your more recent experience relative to cycling, Olly? More generally?

Do others of you also experience this? Olly mentions that cycling is much like it is with MS -- this is the FIRST I've ever heard of anyone else mentioning this (and I agree, because for the past two years, I've often thought I had MS)!

Thanks to all,

Mike
 
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