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1sunday

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So glad I have found this group. I have some serious symptoms and questions about tests that I hope someone can answer for me. In April of 2017 I started falling for no reason. My knees would just buckle and down I would go. I fell at least once a week thmonth of April. Then I would go about three for four months and fall again. I have always been ckumsy, even as a kid and didn't think much about the falls because I have had surgery in my left knee twice and once on my right knee. My right knee has no cartledge or ligaments on its right side,so it has always had a tendency to give out on me. had surgery on it when I was 16 and am now 58. Went to the doctor and I have osteoarthritis really bad in both knees.

In the fall of 2017 my lower back began to hurt. I went to neurosurgeon and had MRI which showed three bulging discs, Bone spurs and lots if osteoarthritis. Said no surgery needed and to just take a steroid shot or arthritis medicine. The middle of October of 2017 I had an arthritis flare up in my hips that lasted til the middle of January. Took steroid shots and predinose, pain pills and muscle relaxers. In Feb of 2018, I went to physical therapy for a month and felt much better. I had not been able to climb steps since the arthritis attack and the physical therapy help me to be able to walk up steps again.

Everything was fine e u til around the end of June 2018 when I noticed I had difficulty getting up from a chair occasionally. Neurosurgeon sent me to pain management and I had a steroid injection in my lower back. One week later my right knee gave out on me while walking down two steps and I fell catching myself with both arms. Went to doctor, no broken bones and prescribed a brace. and 4 weeks later I had a bilateral cortisone injection tion into my hips. Two weeks after the fall and one week after the injections, I am emptying the dishwasher and realized I couldn't put a plate on the bottom cabinet. In fact I couldn't raise either of my arms above my head while standing or sitting, however when I am in bed at night I can raise the above my head.

Doctor sent me to neurologist and I had brain, cervical, and thoracic MRIs. Nothing showed on Brain, cervical showed problems with C 4-6 and some narrowing on both sides . Thoracic showed small tumor at T10 and protruding disc at T12 L1. Doctors said none of what showed on MRIs would cause my muscle weakness. I had a lumbar puncture which turned up nothing. He did an EMG and nerve conduction test which showed peripheral neuropathy and carpel tunnel in my right wrist. Blood test showed muscles are alive and not leaking.

On my last visit in December 2018, after about 45 minutes of having me bend, walk, touching muscles, checking reflexes and checking strength, he turns to me and says, I have no idea what is wrong. Your muscles are ok and nerves are not compressed. You don't fit in any box. This is kind of like limb girdle but you don't have the markers for it. Whatever this is I feel certain will resolve itself on its own and it may take up to two years.. I am going to have to do some research and dig deep to figure this out. A week later his nurse calls and tells me that he wants me to give blood for a genetics test. It has been five weeks and tests results are not back and I am freaking out.

I have been going to occupational therapy three days a week. Also, I forgot to mention that about a month after my arms went limp, I could no longer get out of a chair. I have been sitting and sleeping in my lift chair since the 10th of October. My arms have very little strength and my range of motion is better some days than others. Oh, and around April I had a sharp pain on the left side of my stomach. Had a stress test and echo and heart checked out fine. Did notice that I had weakness in my left arm shortly after the pain but it went away after about a month. Then in October I had a sharp electrical pain shoot from around my backbone down my left arm into my hand making my left arm much weaker. I am a type II diabetic and take 130 mg of insulin a night.

I am not sure what is happening to me. My shoulder blades hurt and upper arms hurt periodically and because the cortisone shot has worn off,. My hips some days hurt so that I stoop over. I am under a great deal of stress.

I am sorry this post is so long but I felt I needed to give background information. Is this anything like ALS? I can still drive.i have no problems with my legs in regards to being able to lift for working the gas pedal or brakes. Arms are pretty stiff when I first started using the steering wheel but after a little bit they loosen up. Please excuse typos.
 
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KarenNWendyn

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I don’t see ALS at all in your post, but lots of other things come to mind.

One is that if your joints are worn out, you can expect muscle atrophy around those joints, along with muscle weakness.

Another concern is that since you are diabetic, you are at risk for diabetic myopathy, which is a complication of muscle weakness in some people with diabetes.

Another concern is what is known as steroid myopathy. This is a type of muscle weakness that can develop in some people who receive repeated cortisone injections and/ or Prednisone. Prednisone can also impair your diabetes control.

I’m assuming you have osteoarthritis, but you could have rheumatoid arthritis or some other type of inflammatory arthritis causing your joints to wear down. Your next step might be to see a rheumatologist to determine exactly what type of arthritis you have and if there would be a safer more effective long term treatment for you other than repeated cortisone injections or prednisone.

If your cartilage in your knees and hips is worn out, then you might do well with joint replacements.

Physical therapy will be helpful to you in addition to the above.

But there is no ALS here and that’s great news.
 

1sunday

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Thank you so much for your reply. I tested negative for rheumatoid arthritis. I do have osteoarthritis in my hips and knees. After the fall and steroid injection ruons, I had about three days of course stant muscle spasms and electrical shocks all o we my body. Then it calmed down but I still have muscle spasms and have had cramps in legs and hands but started taking magnesium supplements and the cramping has all butgone. I am
depressed because it is hard to brush my teeth and hair. I am hoping the genetics test results come in soon. I am just worried that it is taking so long for the doctors to figure out what is wrong with my arms and I know ALS can take months to diagnose
Thank you for your input. It has helped ease my mind.
 

Clearwater AL

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1Sunday,

Have any of your doctors mentioned the possibility of any of the
inflammatory myopathies, such as Inclusion Body Myositis (IBM)?...

which is also a difficult discovery in the early MND diagnosis being
somewhat of mimic to ALS without fasciculation.

And being 58 it is for the most part a later in life disease.

Maybe Karen can further expand if it is a possibility. Just wondering.
 

Nikki J

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Do you know what they are testing for in the genetics test? I doubt it is FALS with your presentation.

I hope you are being seen at an academic medical center. It sounds like it is probably multifactorial and will need someone willing to sift through everything for you.
 

KarenNWendyn

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When you said you “tested negative for rheumatoid arthritis”, I assume you mean your rheumatoid factor was negative. However, 30% of people with rheumatoid arthritis have a negative rheumatoid factor, and there a numerous other types of inflammatory arthritis where the rheumatoid factor is negative. Polymyalgia rheumatica (PMR) is one example. Often, a test for inflammation such as the sed rate (ESR) or CRP will be elevated. But as the presence of Prednisone or injected corticosteroids can affect the levels of these test results, they are most reliable when the person is off Prednisone.

Inability to wash or brush hair is pretty classic for someone with inflammatory arthritis in the shoulders, particularly if these tasks are harder to do in the morning.

There are also other types of connective tissue diseases and many types of muscle diseases (myopathies) as Al has noted.
I should also note that osteoarthritis is common and does not exclude a person from also getting inflammatory arthritis.

I think you need to see a rheumatologist. They work with arthritis, connective tissue diseases, and myopathies all the time and can help sort this all out for you. I practiced rheumatology for over 25 years, and this is the kind of stuff I saw every day.

But I do not see ALS in your post at all.
 

1sunday

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Thank you Karen. I will talk with my doctor about seeing a rheumatologist.

They post all of my tests online and I have access to the results. The test that they checked for rheumatoid said negative. I am not sure of its name but when I googled it, it said it was for rheumatoid arthritis. My ANA titer was also negative. He thought it might be lupus mysositits but lupus test was negative. He has not mentioned any myopathies. He did mention Gullian Barre and Mathias Gravis.

My arms and body as a whole seem to loosen up as the day passes. However, there are days when the more I walk the worse my back, hips and neck/shoulder areas become. I had soup for supper tonight and it was hard getting the spoon from the bowl to my mouth and since I can't lift anything very heavy , I didn't put much soup in my first bowl. When I went back for another ladel of soup, it was easier and took much less
effort to eat it.

My doctor is not from a teaching hospital. He has the reputation as being one of the best neurologist in the area. Not sure how many years of experience he has but I am pretty sure it is over 30. I am the first patient he has ever ordered a genetics test for. I am very depressed. I think I am dealing with several issues but my neurologist is thinking it is possibly one causing all the others.

My orthopedic doctor said I am not quite bone on bone in both knees but I am getting there and even mentioned that I may need hip replacement before knee replacement. I also think that I may have hurt my arms because of my many falls. I have not had an MRI, CT scan or even x-rays on my arms or shoulder blades to rule that out. I went for three months that the only pain I had in my arms was when I tried to lift them above my shoulders or head. Ironically, when the bilateral cortisone shots wore off in my hips, my shoulders, shoulder blades and upper arms started to hurt as well as my toes, knees, legs, and hips.

Another crazy thing that happens is that my big toes will occasionally jump as will my index finger on my left hand. They don't jump at the same time. I have noticed my index finger will jump when I have my left arm lying or pressed against something. And my toe will jump when I put pressure on my hips. Both arms have been falling asleep quite often lately. Especially while I am asleep. I do have knots in both of my upper arms that I pointed out to him and he acknowledged. I am just frustrated and depressed and scared.

My oldest son is sick and my husband is currently in the hospital for the third time since I have been sick. I feel so helpless because I can't stay with him because I can't get out of a chair or get off the toilet if I have to go. Plus, I can only wear pull on lightweight dresses, sandals, and a shawl because I can't handle anything else the least bit heavy.

I am sorry for having a pity parry. I just feel so alone while waiting for answers from my doctor. I need to stay off the internet because i just scare myself. I just want to get some answers, hopefully a treatment plan, and to feel better. I haven't quite finished my bucket list and more importantly I want to be able to go do some things with my grandson's.

Again thank you, Karen, for your knowledge and kind response. I am making a list of questions for my doctor and you have helped immensely.
 
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1sunday

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Thank you so much for replying. I have so much going on that I honestly think that is why my doctor hasn't diagnosed me yet. I think he is looking for one underlying cause that is creating all of the other problems. I am just thankful and my mind has eased a bit by your comments that you don't see signs of ALS. I am going to talk with my doctor about taking an antidepressant. I am only taking Alieve for pain and my insulin and blood pressure medicine. I understand and appreciate my doctors caution, but four and a half months is a long time to go without treatment, especially since it is getting worse, not better. Again, thanks for your input and listening to me. It is hard to talk about your illness with people who are not ill. It is hard for them to understand or identify with it because they are not experiencing it.
 

Clearwater AL

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I’m sure everyone here hopes your doctors find a fitting diagnosis and
begin to treat you with successful results.

However… this is an ALS Forum.

ALS is not present within your extensive symptoms and numerous test
results.

Reading an ALS Forum may not be helpful to you with your depression struggles.

Again, you need to let this Forum go. Hope your doctors find you relief and
most of all... a cure.
 
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1sunday

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Thank you all for letting me share my fears. Good luck and God bless.
 

1sunday

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Just thought I would update those who responded to my post. I received the results of my genetics test last Tuesday and it turns out I have Pompe disease. My doctor is sending me to a teaching hospital and I should hear from them sometime this week. I am scared because I don't know what the future holds, but am relieved that I can at least put a name to my symptoms. Thanks to everyone who replied to my previous posts. Talking with others who have serious health conditions helped me tremendously. I wish all of you the best of luck and may God bless all of you for showing me kindness, and giving me knowledge and encouragement.
 

Nikki J

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Thank you for the update. Best wishes as you go forward on the journey.
 
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