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AKmom

Senior member
Joined
Jun 2, 2010
Messages
608
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
Hi All!
I have been reading alot of this forum for quite a few days now. I have not officailly been diagnosed with PLS but the more I read the more it sounds like my problem. Please bare with me will explain my plight and then I will ask some questions.

I am now 51 years of age but have had been diagnosed with several different serious health issues since 1991. They include the following list but I have noted some with * to let you know that they have resolved or the doctors have changed their minds (this seems to happen to me frequently).

1991 cmv/ebv*
1992 CFS*
1995 Brain injury (car accident)*
1995 seizure disorder*
1996 Fibromyalgia*
1998 Gestational diabetes*
2001 type 2 diabetes*
2001 rhuematiod arthritis*
2001 poly rhuematica
2001 complex migrains (is somewhat resolved with high dose of magnesium)
2001 chronic sleep disorder with no real name (overnight testing done, I woke 375 times w/no explination. Drs. dont know diagnosed)
2001 myoclonus
2002 right sided weakness in leg
2002 periphal nuropathy
2004 mini stoke (most likely caused from estrogen for menopaus shown on mri)*
2005 right sided weakness increases and left side starts to cramp
2006 broke left hip in fall*
2006 increased clumsiness and falls
2007 mild spinal arthritis/slight bulging disc
2008 Cramping in feet begin Hammer toes begin and some other deformation on right foot
2008 hands start to spasm frequently
2008 twitching of muscles increases (anywhere on body)
2008 occasional extreme itching and swelling (almost like hives, anywhere on body)
2008 cannot walk straight line for the life of me/ left side leg weakness
2009 back cramps that require shots in the spine (last one didn't help)
2009 arm weakness/hand weakness...really lost my grip
2009 leg weakness increases/cannot do stairs or walk for more than 10 minutes without becoming very spastic (like cerebral palsy)
2009 in winter if I got cold and shiver I would totally lock up in all muscles to the point of passing out from the pain (I won't ever get in a cold car again).
2010 continuous spastic muscles (somewhat relieved by tizanidine (zanaflex)) everywhere on body

within the past month I have been having continual tight muscles in the neck jaw and around my head (like a tension headache). If I get overly tired I drool ever so slightly on the corners of my mouth (kinda embarrassing). My speech will slow somewhat with ever so slight slur of words...but its not all the time...just when I am extremely tired.

What has been ruled out thus far...
in 2008 a ms nurologist said I didn't have it. Last mri of head was in 2007. Every kind of bloodwork has been done. Only slight elevation in CRP but not enough to indicate RA or anything. No thyroid problem. No lyme desease. No serious back injury to indicate leg issues.

In Nov. 2009 had an EMG that came out ok. That neurologist was the first one to mention PLS but did not officially give me the diagnosed. He wanted me to go to Mayo Clinic. Several weeks later I got a letter from Mayo Clinic saying that I didn't qualify (or his report didn't qualify). My primary MD began to get really worried about my feet and was thinking it was charcot marie tooth disease. But the neuro didn't think so (but then he didn't think that the stoke evidence on the mri was a stroke even though two other nurologists said it was). I now have special inserts for my shoes with the right one having a brace because I have been diagnosed by pediatrist with severe dropfoot on the right. They don't help a whole lot since both my feet drag when I walk because my legs are so weak. The more I walk the heavier they get and the more pain I am in with spasms.

I now am spastic to the point that none of my muscles will relax even with massage and has progressed now to moving up into my head. My primary doc has now written Mayo Clinic again (about a month ago) and we still have yet to hear back from them. Now for my questions...

1. Since I live in Alaska, I will have to travel down to the lower 48 to some clinic to get a final diagnosed. Is there some other place in the lower 48 that is highly recommended from people here that were diagnosed? I have a hard time now with trusting what most specialists say because it seems that no two agree and that they also change their minds too much.

2. Does anyone with PLS have problems with the muscle tightness all over at the same time?

3. Do my symptoms, especially the leg/arm/hands weakness, overall spasticity, chronic fatigue, severe pain (8 to 9 on the scale with occasional bouts of a 10), slurred speech when tired and feet deformations even remotely sound like PLS?

I have been dealing with chronic pain for years but I am now getting really concerned that my mobility is so impared that I cannot continue to do anything. I am a photographer/artist and am barely able to hold my camera. I have had to quit painting/building sets for the local theater (something I used to really enjoy but stopped in 09). I cannot go out alone anymore...have to take someone with me in case I fall or cannot drive myself. Even going to the store has become almost impossible (I am starting to think I will have to use a cart if I do big shopping), I can only go for short trips. I generally keep a positive outlook on life and have come to the conclusion that whatever is effecting my body like this will not kill me but it is progressing to the point of frustration.:-(

My current meds are:
Magnesium complex
tizanidine 4mg 3x daily
ambien

as needed and used very sparingly:
Norco
tramadol (ultram)

Sorry this is so long. It has taken me 65 minutes to type it (hopefully it will send).
 
Firstly, welcome to our community! I, like you, have had my neurologist verbally say I have PLS, but not feel confident to definitely diagnose me. He wants me to go to Columbia in Manhattan for the final call. On paper I am still considered to have HSP, a usually less disabling upper motor neuron problem. The folks here are great, though, and we have the same problems day to day and take the same meds. Even if you don't take the trek to Mayo, I hope you will stick around, there is great information on coping strategies and a lot of emotional support for bad days to be found.

I don't think PLS can explain everything you are experiencing, but you certainly seem to have a similar progression of weakness and spasticity. Your description of winter could have been copied from my diary, and I have heard similar complaints from people on the HSP and PLS lists. UMN is not very well understood, and the lack of a definitive test doesn't help. HSP comes in many varieties, and each has very different complications - everything from audio processing disorder to swallowing difficulty to mental retardation. That tells me that the things that cause upper motor neuron deficits can be also affecting a wide range of systems. Also, the stress of having mysterious neurological systems can hit anywhere in a serious, physical way.

In my mind, if your core symptoms walk like a duck, quack like a duck, and all the treatable options have been ruled out, it is time to get pragmatic. There are things diagnosis is helpful for, like getting disability or help from certain organizations. Other than that, having an untreatable progressive disease diagnosed is not very helpful. Having a name is nice for family and friends, but I am assuming they don't require a doctor's note. So I would say the important thing is getting set up with appropriate living aids: wheelchairs, walkers, pain meds, diets, that kind of thing. There are aids for anything! Whatever disability we experience, someone else has first. For instance, I can't type anymore, so I use a program called Dasher. Holding things is difficult, so I have a few "universal utensil cuffs" which strap to my hand and hold tooth brushes, forks, pens, etc. They cost 10 bucks. Some quadriplegics hunt, so there are definitely adaptive mounts and stuff for photography.

Also, remember that you don't have to use something all the time when you get it. A wheelchair, for instance, can make trips out of the house enjoyable again, and sit unused at home till you decide you need it. Your neurologist or GP can write perscriptions for this stuff even without a definite diagnosis. It is all about making a workable lifestyle and reclaiming the hobbies and social life that is within your reach.

Again, welcome!
 
Thank you Beky for your response. I do have wrist braces I bought at Walmart to help with things like holding my camera during a photo shoot and I keep the camera on a strap on my neck to help carry it..but I have been having more problems with my arms carrying the weight of it for extended periods (it can weigh up to 5+lbs with the extra battery power pack and flash units). I use a tripod when I can but this is not always a viable solution. The wrist braces also are too combersome to help with fine motor things such as cutting veggies or using sissors or tongs on the bbq. I frequently drop things or they go flying across the room because of a spastic jerk. (no I am not calling myself a jerk! :) )
I do use a cane when traveling longer distances...but for the most part it is more burdensome as I keep dropping it from my clumbsiness and have difficulting bending to pick it up. I don't think it would help me if I started to go down anyway...but it does provide some stableness to my unbalanced feeling.

I agree with that the diagnosed really will not change much for me personally. But for the reasons you stated such as giving an answer to those who ask me why all the hardware that I wear or to get services that might be needed it would be a definate help to have a diagnosed. I think if I was to have a wheelchair now...I would not be walking at all. When we built this house, we had designed it for wheel chair accessable for my mother in law who had parkinsons (she has since passed away) and for the event that my slight problems back 13years ago should become a problem. So everything I need is on this main floor for me and there is a concrete ramp out off the side of the front porch and on in the garage to the house. Extra wide doors. So we are set (with the exception of counters not being wheelchair accessable).

I have two disabled sons. The eldest has a rare form of cerebral palsy and the younger has autism. Both are grown and still live at home. The eldest gets along just fine. The younger is high functioning but has services provided by the state where they send someone in to help him through his day since I cannot drive him around and care for him like I use too. The care provider is more concerned about my ability (or lack there of) as they watch me deteriorate. But we cannot afford such a service and my sons bill is paid by the state because of a court order given at his gardianship hearing. He has a disability according to the government. But the government wont even consider me because of no solid diagnosed and my husband works.

My husband still works and his insurance doesn't seem to cover any braces or canes or any devices as such. I haven't looked to see if they would cover a wheelchair...but I doubt it. They wont even cover the hearing aid that I was told to get back in '08 with a perscription...they only covered the hearing test. They didn't cover the $1000 cost of a ritchy brace for my right leg. We pay $20,000 out of pocket (and then we still have our 20% deductable to be paid) to the insurance company a year to have coverage that seems to be only basic. The high cost (so we are told) is because of my and my youngest sons 'pre-existing' diagnosis' and because we are located in Alaska.

So a solid diagnosed might help me get some form of help...but then again it might not. I do not want to take advantage of public services if it means taking away from someone who doesn't have even a house to live in. I am greatful for what we have, although it is getting harder and harder to pay the bills. Its just sad that my hubby will never retire in time for us to travel and have a 'after kids' life as we had planned 27 years ago.

How do you all afford this? Its overwhelming the cost of assistive devices!
 
It has been quite expensive at times, especially when my progression sped up. I lived entirely without insurance for a time, and I will message you some dependable places that self-payers get medical equipment. (Including them in my post will get it stuck in moderation.) I got my first wheelchair for 160 dollars new, and many other things like that at decent prices. Hospital visits and tests are what has really killed me. My two manual rigid chairs cost about 2k each and were worth every penny. Even together they cost less than my brain MRI, and they gave me a fantastic 5 years. My Tilite would have lasted longer, but I lost most of my trunk strength in the course of two months.

Now I am insured, and have ordered a powerchair, but I am struggling with setting aside my 10% coinsurance. In the meantime, even with no formal PLS diagnosis I am using a loaner powerchair from the ALS Association. They were very kind to me, and I think they would help you out if your doctor explained the diagnostic limbo. It is worth a try!

The thing I really despaired to get was a wheelchair van. The prices are ridiculous, even if they barely run! I prayed about that and left it to God, as I didn't see how that was possible for my husband and I. Not two weeks later, we got a call from a person affiliated with a church, but not my church, that a man with MS was looking for someone to donate his van to. It is old (1985), a little clunky, and there was a lot of paperwork, but as of today it is mine, inspected, and has license plates! The lift itself is just a few years old, and my family can't wait for us to go out together outside my powerchair's radius. I truly don't know how I could have bought one, the conversion itself sets the price of these things at around 10k, if you don't find a sweet deal on an online listing.
 
Just got back from an appointment with my GP doc. He has changed my night time ambien to tramadol to see if I sleep any better. I had been on ambien for years so it seems of late getting only 2 to 4 hours a night was not worth the money spent on the perscription. He also told his nurse to call Mayo Clinic TODAY and find out whats going on.

Thanks Beky for the info. I am not sure how I will go about things. My doc is a great guy and listens well. He and I have made a plan to keep me walking and doing things as long as possible on as least amount of drugs as possible so that I can keep going. It seems I am very sensitive when it comes to medications.
 
That last post was a mistake. It was suppose to read Trazodone. The doc has put me on Trazodone instead of ambien. Tells you how tired I was!:roll:
 
Hi, AKmom,

You will find that you will be quite sleepy during the day for the first week or so after starting Trazadone but bear with it and that effect will wear off. You will not only sleep well but the medication will help you cope better with your situation. Of course, the dosage may have to be tweaked if necessary.

Let's hope you get some relief soon,

Northern Dancer
 
Thank you Northern Dancer. Tonight will be my first night on the new med. I can only pray that it works well. The doc is hoping that my spasms will be less if I get some restoritive sleep. I agree that it just might do that...but its been so long since I have had a good night of rest.

Thanks for the heads up on the after effects of the meds. I will keep in mind that it will do that. I also have an 11 year old still at home...so keeping her busy during the summer months is going to be interesting to say the least. She will have a friend over tomorrow so hopefully that should keep her busy until her friend leaves on Sunday.:grin:
 
UPDATE:
Trazadone is just not working for me. I haven't slept much since last week before I started taking it. My spaticity has gotten worse rather than better. The first night taking it...what little sleep I did get was vivid nightmares all night! I can still remember them as if they happened. Its been years since I have had a nightmare or even remembered a dream...kind of thought I didn't have them anymore. I also notice that I get an upset stomach and headache after taking trazadone...along with not being able to concentrate on my work (I am currently working on logo design for a company), although concentration is diminished by lack of sleep and pain too.

I am going back on my old ambein med until I can talk to the doc again. Trazadone and I do not mix well.
 
Joyce,
that is too bad about the Trazadone. Usually the benefits are after several weeks but if you get a headache and an upset stomach it's not for you. Keep trying to find something that works for you. Insomnia is bad enough in itself but it's harder when your job is to be creative the next day.

ND/ Lorna
 
Trazadone was a good med for me, although those dreams were vivid and non-restful when on it. I was given it to help me gain some weight back when I first got sick. I ate like a horse, was always hungry. My husband always laughed and said I ate him under the table. He is a big strong guy, and I was eating his left-overs, too funny. I have not taken it for a long time. Do you live were Sarah Palin lives? I am a big Conservative, so to me that is a Good thing..
 
Ok, anyone try Mirtazepine? This is an antidepressant, and for help in sleeping? It was recommended by home health. HUGS Lori
 
Hi Joyce,

I'll throw in my 2 cents here.... Trazadone is an anti depressant that often does help with sleep and pain. I have back and shoulder pain along with fibromyalgia-- so I've had trouble sleeping for many, many years, and have often been prescribed anti-depressants because they've been found to help with pain. (I'm not depressed), it's simply that some anti-depressant meds have an effect of reducing pain. In medicine, it's psychiatrists that are the experts in finding the best medication, in case you want to go that route.

Stopping an anti-depressant abruptly can cause very vivid dreams. That wouldn't explain why you had vivid dreams the first night you took it. I'm just throwing that out there.

Mayo Clinic in Rochester, Minnesota is #1 in the US for neurological problems. (And happens to be where Lou Gehrig was diagnosed.)

Northern Dancer is completely right-- some bad side effects will go away with time, you just have to wait it out. But it's best to talk with your doctor first.

By the way, meditation is awesome. I'm a certified hypno-therapist, but you don't need to be to learn some simple techniques for both better sleep and pain relief. I can self-hypnotize and make pain go away (temporarily). The mind can be a cool tool. Something to think about.

I hope you get an answer someday soon. Keep us posted.
 
Thanks all for your replies. I took ambien last night and slept through the whole night...8 hours. First time in months! Maybe I just needed a break from the ambien to trick it into working again.

As for antidepressants...I have been on many of them...all with mostly negative effects. The majority of them give me severe headaches and a few of them (SSRIs) give me seizures, so they are on the allergic list. My doc had told me to stop taking the trazadone if there were any bad effects like headache (migraine).

As for pain...its weird that over the years I have learned to tollerate more and more pain. Alot of it is mind over matter...doesn't mean that the pain doesn't exist...just my attitude toward it has changed. Where I once thought pain was not suppose to happen...and took meds to try and get rid of it completely (trying to obtain a 0 on the pain scale), I now think pain is a part of life (my life) and is to be controled (try to keep it at a level I can still move with... 6/7 on the pain scale), I take just enough meds to keep moving without needing to drug myself into oblivion. Thus why I only use narcotics maybe once every couple weeks (depends on my activity I am doing...ie, yardwork, walking long distances like shopping...ect). I rest when I need to if the pain is above 7/8 and take something at 8/10. Now I do not consider zanaflex a pain med since it really doesnt do anything but keep the muscles from being so tense.

H4C....yes I live where Sara lives (when she is in town). I have met her a couple times and have taken pictures of her during her visit with one of my clients.
 
update for those who are interested.
Mayo Clinic sent me a letter of acceptance but told me that its a 4 to 6 month wait before they can schedule me! Then they signed it from the RHUEMATOLOGY department?! Sheesh! I told my doc thats just not right as I wont go if its the rhuemetology department. That would be like going to the dentist and expecting an eye test evalutation! The doc thinks its a mistake too. He said that he was under the impression that mayo clinic would to a multi department evaluation, but Mayo denies that they do such a thing. So if I am going to spend that kind of money to go to the mayo they better be sure to get me to the right department. So its still very much up in the air on whats going to happen.

I haven't been taking anything for sleep. The ambien stopped working after the second day of working. I have been living on about 2-4 hours of sleep for several weeks. My doc wants me on some antiphsycotic drug (cannot remember the name) which at low doses works for sleeping disorders. I do not want to experiment with any antiphsycotics because one time a phsychietrist put me on some because I was experiencing phsycotic panic attacts after starting an antidepressent he put me on...and it made things even worse. That was when my hubby and I desided enough was enough with doing everything a doc says without researching first. I researched the drug my primary doc wants me on and didn't like what I saw on the side effects and people saying they had bad emotional outbursts on the med. So no I will not go there thank you.
 
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