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Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
209
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
City
Dartmouth
Over the last two years I started having what at first was generalized symptoms such as getting muscle cramps and started primarily in my right leg, but gradually over time spread to my left leg and occasionally I would get a cramp in my abdominal area, around the area of my rotator cuff area of my shoulders.

I would start sighing frequently, especially in the evening hours. I cannot give a very strong cough, for some time now. During the early part of the journey with muscle cramps, I was told to make sure I drank eight glasses of water a day and eventually was told to start taking calcium and magnesium, despite my electrolytes and mineral levels be in normal. In the summer of 2014 I just had a generalized soreness in my rotator cuff of my right arm. Other than the cramps and soreness being a bit annoying, they were certainly something I did not even worry or care about.

Fast-forward to October 2015, while doing a couple of auctions I develop severe Charlie horses which thus cause me to cancel my auctions. In late October I started to have muscle fasciculations, that initially started in my right leg and within a couple of days spread to my left leg.

As my family doctor had a previous ALS patient plus looked after two other ALS patients in a nursing home, he suspected that could be a possibility with me (he did not tell me this until after the neurologist concurred with his thoughts). He sent a consultation to a neurologist on that date, been several days after that visit I went to a hospital emergency department, this weakness in my right leg as well as severe cramps and after being evaluated at two separate doctors, one who was a neurologist, he felt I was having problems that was consistent with motor neuron disease. (I did not know at that time motor neuron disease was ALS) Between that time and November 24, I had a battery of medical tests including EMG, nerve conduction studies, bloodwork etc.

The Neurologist diagnosed me with limb onset ALS. I have had follow-up tests including a spinal MRI, a painful lumbar puncture, visits with occupational therapists, physiotherapists, fitted with a BiPAP machine, using a cane, and currently waiting to have speech and swallowing studies done this Thursday. Where I am still fairly newly diagnosed I have asked for a second opinion of my diagnosis just to be sure that a second opinion concurs with the original neurologist.

My most recent visit with my physiotherapist shows I have drop foot, right side in the muscles in my right leg and arm are getting extremely weak. She also recommended that I immediately start using a walker as I've had some close calls with falls recently. My fellow PALS At Our Local ALS Chapter, support group, all advise to make sure I conserve energy, eat lots of high calorie foods, (good quality and nutritional value food) to help maintain weight is very important to trying to live longer with this disease. They also advise me to make sure I separate the wheat from the chaff in how people advise try this or try that.

One of my biggest challenges is maintain composure and hope with my immediate family members as they too are having a challenging time coming to terms with this diagnosis and seeing how my body is losing strength and coordination to this terrible and horrifying disease.

In the last few weeks I'm losing strength in my voice as it has become an raspy, hoarse and also I'm getting frequent cramp like sensations when I chew food and things are getting caught or the sensation of getting caught in my throat when I swallow.

To be honest, these bodily deterioration's are getting scary. My family and I did not expect the weakness and other developing symptoms come on this quickly.

It humbles me to see how brave, compassionate, and helpful other PALS are to the newly diagnosed people like myself with this disease. I admit I have a great deal of fear and apprehension in trying to think ahead of how I will have to cope with declining use of my arms and legs as this disease progresses. It is hard to reconcile to my brain that I can still feel sensation in my toes and for it, yet they are flaccid and there is no muscle resistance to kind of hold my body weight when trying to lean toward my toes. My physiotherapist is going to work with me to try to keep my movement and mobility going for as long as possible while I adjust to the impairments caused by this disease

Thank you for reading or listening and I promise to post again fairly soon all the best Scotiaspirit.
 
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Welcome, fellow Canadian. I'm sorry things have progressed as they have and that you find yourself here.

I'm glad you have a local support group, as well, this forum is a gold mine of information.

~Fiona
 
Hey Scottie, welcome to the forum , glad you found us, not glad your here as this is a nightmare, but you already figured that out. Your digression sounds similar to mine yet everyone's a little different. Your local support sounds great, so post often so we can git to know ya . Love ya chally
 
I'm sorry that you have to be here....but, I'm glad you found this site. It's become a lifeline to me. Even the best doctor isn't as good of a resource as a fellow ALS patient. Be careful with falls....get the walker sooner rather than later.
Audrey
 
I visited the local ALS office to pick up a M-Rail for my bed and the admin there reiterated what my PT and said to start using the walker ASAP, so I called my PT today and it is now ordered. 3.5 months ago, I could walk normally, in November had to start using a cane as per my advice of the doc and now to a walker. The muscle weakness is getting exhausting even for short distances now. Some of the fellow PALS here locally tell me to conserve, conserve energy....... and I now know what they mean. Next week, I have to get fitted with an upgraded BiPap machine as my breathing is getting afffected too. I am getting worried to how fast this beast is taking my vitality away.
 
I'm so sorry it is moving so fast.

Conserving energy is really important - it's not giving in, it's how you fight to enjoy the most of your life! If you use all your energy keeping your balance and walking up and down for menial things, then you have no energy left to enjoy something else. Then if you fall and are injured ... well quality of life is robbed from you yet again.

It's horrible, and adjusting to what it means is not easy!
 
I'm so sorry it is moving so fast.

Conserving energy is really important - it's not giving in, it's how you fight to enjoy the most of your life! If you use all your energy keeping your balance and walking up and down for menial things, then you have no energy left to enjoy something else. Then if you fall and are injured ... well quality of life is robbed from you yet again.

It's horrible, and adjusting to what it means is not easy!

My OT has suggested little things that are helping too, like keeping a portable urinal downstairs so I don't have to make trips up and down through the day, the walker which I should have by later in the week, and the BiPap is helping me feel more rested and giving my lung muscles a bit of a rest, but I seem to be gulping a lot of air into my abdomen during my sleep, so next week I have to go to the sleep disorders laboratory to be fitted with an upscale BiPap from the one that I have now.

I see how this disease is having an affect on my wife; she is heartbroken and trying to maintain composure, but she is having a tough time at work right now, but cannot take more time off, as she was off for a month and half with a rib fracture and then pneumonia. (She fractured her rib the day after I was diagnosed with ALS, we went back to our camp/cottage and the mattress was hanging out over the box spring (someone switched them and put a queen size mattress on a double size box spring,) and when she went to lay in bed, the mattress gave way and she ker plunked on the floor. Her rib was sore for a week before she knew her rib was broken, and when she sneezed (a week after the fall), she saw stars and had excruciating pain....a trip to EMERG dept., and an x-ray showed a rib fracture. Just as the rib was healing, she came down with a flu bug followed by pneumonia, despite having the flu shot six weeks earlier.

I had to wear a paper/cloth material respiratory filter over my face for a couple of weeks when she was sick, and we had a generous supply of Purell Hand lotion to make sure it lessened any chances of spreading respiratory pathogens to me.

We currently live in a duplex type house that has three floors. We are looking into finding a place that has everything all on one level, where there is no lawn mowing or snow shovelling required (a seniors type building) that has good access for people with disabilities. We were hoping to remain at our current home for another year or two, but I am losing my ability to walk, and it will become too challenging; and risky for having falls on stairs...so we are going to have to accelerate our search for a different type living arrangements.

We want to make every moment count; and despite having to live our life together in sort of an accelerated time frame from what we expected, we have goals set, places we want to travel etc.

A question I have, what do people take to help relieve muscle spasms? I was prescribed baclofen, was started on 10mg and now up to 20mg up to 3x day, but it does not seem to be helping much. I have had people suggest Cannabinoid Oil, but my doctor is not one that likes to prescribe that. There are other local ALS people that have been using it and keep telling me that I should really take it as they feel it has prolonged their lives significantly, above the avg timespan usually given for ALS survival. I don't want to get my doctor upset at me, as he has been a good doctor to me for the last 23 years.

SS
 
A question I have, what do people take to help relieve muscle spasms? I was prescribed baclofen, was started on 10mg and now up to 20mg up to 3x day, but it does not seem to be helping much.

SS
The first step in relieving these recurring pains is determining whether they are due to spasticity or cramping. Medications that work for spasticity don't necessarily work for muscle cramps and vice-versa.
Spasticity affects larger areas of the body - arm, leg, trunk, neck. All the muscles in the area tighten up and the entire area may be so tight it hurts. Muscle cramps are generally limited to a single muscle and the pain, although intense even in small muscles, is limited in area. They can often be felt or even seen as a separate area of bunched up muscle. They can often be felt or even seen as a separate area of bunched up muscle.
Spasticity often begins with an odd sensation, sometimes described as a quiver, rushing and spreading through the area and becoming painful as they tighten the muscles and more painful as the muscles tire. Muscle cramps start out painful and just get worse as they tighten up.
Spasticity in the legs generally causes them legs to stiffen out. In the trunk, back or neck it causes your body to arch a bit. In the arms it may flex or extend the arm. Spasticity is often most striking when you first wake up or start to move after sitting still for a while and can often be connected to a sensory trigger. That trigger can be as mild as a gentle touch so the connection may not be made.
Muscle cramps often affect the hands and feet making fingers and toes curl incredibly tightly. Spasticity is more widespread, less likely to affect just those muscles, and more likely to stiffen them out than to curl them.
Spasticity can usually be helped by medication but can be a very stubborn problem. One consideration in treating spasticity is to find a balance between relieving excessive and painful spasticity and maintaining a certain level of spasticity which can be helpful by replacing muscle strength. Baclofen is for spasticity, not cramping.
Quinine and Mexilitine are very good for preventing cramping. Magnesium, potassium, calcium are just some of the things suggested but should be used as ordered by a doctor. Excesses of these can cause severe problems. More importantly, they are less likely to be effective to any definite degree unless your levels were low to begin with -- and that is not usual in ALS. In ALS muscle cramping is caused by nerve irritability and/or muscle strain as muscles weaken.
Mexilitine is a new drug gaining in use, but like Quinine (Qualaquin, Quinine Sulfate) it has possible affects on heart rhythm.

*From my website. Click on my name then on "view homepage" to see my website.
 
SS-

Your poor wife! Rib fractures are excruciating. And having pneumonia on top!

Re: cannabis. YOU are the person suffering from ALS and have every right to explore treatment options. Your family doctor is there to help you and advise and treat on health matters. Your ALS clinic might be a better place to discuss some of your treatment choices (they are, after all, YOUR choices!). I bet you find the ALS clinic is very open to cannabis use, even if they're quiet about it.

There is a lot of literature out there supporting cannabis use in neuro issues. My own experience with worrying about what my doctor thought also caused me to take a step back instead of advocating for myself. However, eventually I just let her know what I was doing, why I was doing it, and that I would let her know if I changed anything. It turned out to be a non issue. Lots of doctors are concerned about being seen as "pro pot" due to possible professionalism issues. If your doctor is unable to look past something that is proven to help many people with ALS, then his practice is detrimental to your health and well being. Even if the effect is purely placebo, the goal is still to make you feel better.

My experience with Baclofen was counter to what it's supposed to do. My disease is almost all spasticity, so Baclofen should have provided relief. It did not, so I just kept knocking up the dose thinking I just wasn't taking the ideal amount. I ended up taking 80mg daily. It actually made my spasticity worse, plus compromised my breathing and swallowing. I backed down the dose and use a combo of Tizanidine (4mg) and...cannabis. The cannabis is low THC and high CBD- so it doesn't affect cognition or mood in any way.

Good luck finding the right combo for you. It may take a while to find what works best. Don't discount the Baclofen yet though- others here take it with excellent effect.
 
Welcome to the place nobody wants to have to be. I am sorry about the speed of your progression; I think you are wise to get moving on moving.

Your poor wife is on a roller coaster now that never stops--it just slows down sometimes. After nine months of crying at least once every day, I gave in and started antidepressants. They allow me to function without falling apart, something that was starting to happen in public.

As for upsetting your PCP--that should not dictate the course you chose to follow. I agree with shift kicker--address those issues with your neurologist. ALS clinics are used to addressing the complications of the disease.

Becky
 
I appreciated your opinions and replies. After talking to a number of PALS both in person and online, I believe it would be a good fit for me. I was talking to a guy locally who is living proof of where THC has played a role in slowing down his progression. He is adamant of that fact and really suggested that I try it ASAP.

I have tried a dose of oral herbal oil; and it does distort my senses very mildly; it has done wonders on my muscle spasms this evening. My first impression is a very positive one. (I will try it a couple of more times this week and see how I do; and if it continues to be of benefit, like this evening) I will definitely become my most strongest advocate.
 
Hi I am bja723 and was diagnosed last Thursday although symptoms seem to have started August 2014! I am so scared inside as I am just not sure what is next! I have used a cane for two years as the left foot drop started slowly! I already had spine issues since 2007! I had spinal Fusion surgery in June 2015! The neurosurgeon thought that I would be walking within six months and since June 2015 I have had a regression of muscle strength in the left leg only the footdrop seem to be better after the surgery so when the weakness of the left leg became worse the Neurosurgeon sent me to a neurologist to have an EMG and evaluation of extremities. I just had blood work Which was ordered to rule out any other disease. I really appreciate being able to post on this subject and hear other stories of those who have been diagnosed with this horrible disease. Once I get a second opinion I believe that my husband will not be in denial as he is holding on to hope that I have an impinged spinal nerve from surgery! my son and my daughter are both devastated and it is hard to talk about and I believe they are not willing to hear that their mom will eventually die from this disease.. Thanks for your interesting story and best of luck to you and your family!
 
bja723 I can certainly relate to the emotions you feel. I believe that the fear it inflicts, especially initially, is a very horrible experience to have to go through. I know for me, when I have a "bad" day, I sometimes have to divide that day down into one hour at a time. Eventually, it will get better (somewhat) from a psychological perspective. For me, initially, the emotions, all I could see was loss, loss of mobility, becoming a burden to my family, etc etc. My wife and son, they suffered the real pain of watching my pain. I was so angry at God. Why is he putting us through this right now. We had just reached the sweet spot in our life, our marriage and family. One feels the rug was pulled out from underneath, that is for sure. If there is an ALS Society office near you, I would recommend you contact them, they have wonderful programs, support, equipment loans, and are there for us. I have been going to the PALS support group, meeting other people who have been diagnosed with ALS and are at various stages of the disease. They have given me real hope, hope that we can still live a productive life while living with this fatal disease. I have seen the best and most wonderful qualities come from people that live around me. Allow people to help you; they genuinely want to and it makes a real difference. Sorry you have had to get dx with this disease. I lost myself for the first couple of months, but gradually coming around and accepting that I have to live with the limitations imposed on me with this disease. I hope this helps at least some for you.
 
I so appreciated your taking time to write your most helpful thoughts! I am going to get a 2nd opinion from an ALS specialist in North Syracuse NY! The dr that made the diagnosis said 98% sure leaving me 2% hope! I will continue to accept the diagnosis but want a 2nd opinion! I have no other symptom of ALS other than left leg weakness with atrophy and since spine fusion surgery the foot drop is better and the weakness with nerve damage is the same! I am confused. I will keep you updated! I am so thankful for everyone on the site that shares! I am so happy to have a wonderful family to love me through this!
 
bja723, accepting the diagnosis is truly a work in progress, I am nearing the 3 month mark since my diagnosis, and I see how my body is retrogressing, the symptoms are a slow, but steady decline I still find myself trying to block out the reality. Accepting it hurts so much! I try to live my life as normal as possible, but the new normal is constantly adjusting and making new amends to deal with the constant changes taking place. For me, living with ALS is making amendments to my routine adjusting things to keep as much normalcy in my life as possible. Truly a work in progress. Hanging on to HOPE is an integral part of this equation.
 
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