Waiting diagnosis trying to help husband understand.

[wallybird]

Hello I am looking for some guidance and help for my husband right now. We are in the process of trying to get a diagnosis or at least pointed in the right direction.

About 5 weeks ago he began to feel some pain in his shins on both legs, the right side felt a little more tender to touch mid calf. We thought maybe shins splints as he was doing a little more activity than normal. As the week progressed he also got some pain in his shoulder and another tender spot on his right elbow. After taking it easy for a week with no improvement we went to the dr. Dr said probably overworked, provided a muscle relaxer shot of tordol and a steroid injection in the tender spot on shin and elbow, sent us on our way.

A week later we went back. Arm pain was pretty much gone, but leg pain moved up to his thighs and shins only hurt when the thighs were extremely sore. He described it just as sore feeling. Dr said you have fibromyalgia gave him a small trial of lyrica and sent us on our way again. Going through the lyrica provided no relief and his back also began to hurt. Arm pain again pretty much gone, he said every once In a while a little pain would come but as soon as he said it, it would disappear. Back the dr since the lyrica provided no relief sent us to a neurologist.

Last week 10/9 while working he felt what was like a pop in his back, he about jumped out of his skin when I touched his lower back directly on the spine went to the ER. Immediately gave him a pain pill and Robaxin. Would only perform an X-ray. X-ray show nothing that needed immediate attention. During his X-ray about 40 minutes after getting there the X-ray tech noticed a twitch in his lip. Dr wasn’t concerned Gave him a script of the muscle relaxers and sent us on our way to follow up with Dr and wait for neuro appointment.

During this week I noticed he was having twitching all over his body. He has always twitched (especially at night) but these were larger/stronger twitched. He had one major tremor in his right hand holding a spoon, he moved And the tremor stopped. After some review I believe that may have been due to the Robaxin as tremors were noted.

His sleep has been deeply effected from the pain.

10/15 the neuro visit was lack luster. There was no physical examination or discussion with the Dr about his back pain or pain general, only what we discussed with his nurse. He looked at my husband and said “you need to be on disability” when he asked my husband if he worked literally nothing else was said about thoughts or how he was doing. . Ordered tests ( emg and CT scheduled a month out) and sent us on our way. My husband was told he cannot come back to work until we got answers or a second opinion. He is the sole provider for our family due to me caring for our very small children, one with some needs. When we left this neuro we believed maybe a herniated disc was the problem..

After some persistent calling I got my husband into a second neuro and I decided to line up a spine dr as well. On 10/18 my husband said it felt like his left elbow felt “funny” knowing we had the appointments on 10/19 didn’t think much of it. 10/19 He woke up without full range of motion in his left arm. He was unable to touch his shoulder with his finger tips or bring his coffee cup to his mouth. It appears to be all upper arm issue. It has improved slightly where he can now bring a coffee cup to his face, but unable to still touch his shoulder.

At the neuro the dr reviewed history (my husband had a TIA in early August). Neuro provided some physical examination and noticed that my husband could not move his left foot toward him. This scared my husband. He continued his physical doing some reflex testing and what not. Noticed some slight tremoring in both hands/arms when they were stretched out. He indicated that some temperature differences between his legs and arms with the left side being colder than the right. Neuro did not pay much attention to his back. Neuro stated he was also thinking fibro and his lack of range of motion in his arm and the drop foot was “stress.”

Next stop spine dr. By the time we got to the spine dr my husband was able to move his left foot upwar. started off saying that he believed my husband did have a herniated disc and we’d do some physical therapy and then I presented his arm issue to the dr. He immediately said that his lower back would not cause this and asked a few more questions. He noted my husband had very brisk reflexes and stated he now wanted to do an MRI of the back and the neck. He began asking my husband questions that were ALS related in my opinion about being able to do fine motor skills and such. Which my husband has not noticed any issue with. Mris are scheduled for next week.

So here we are. 6 weeks of some progressively worsening symptoms, but appear to be happening everywhere. The twitching appears to primarily only be when he’s trying to be relaxed. There are times where at night it feels like he’s jerking. I have confirmed with his ex of 10 years ago that this happened when there were together too. My husband is at a loss and I do not know what to say or do to help him feel better or help him
prepare for a diagnosis. He was in the military and hearing that over reactive reflexes are a sign of ALS he’s very scared. It took going to 5 drs to finally get any type of concern other than fribro, which now I would be cruely relieved.

He does have headaches and occasionally feels some pain in his cheek. The TIA in August Ct scan and MRI of the brain showed no issues.

Does any of this sound like ALS or anything else to anyone? Any words or advice as we go on this journey looking for help:

 

[Vincent]

Good news! ALS typically does not present with pain. ALS usually presents muscle weakness without pain. I can't say what it is but it doesn't sound like any case I've heard of. I wish you luck figuring this out, you don't belong here.
Vincent

 

[KarenNWendyn]

I agree not ALS.

You describe a lot of musculoskeletal pain. It could be fibromyalgia, some type of arthritis, a herniated disc, or some combination of the above.

It’s actually quite common to have osteoarthritis (also known as “wear and tear” arthritis) with secondary myofascial pain (soft tissue pain which can result from altered body mechanics resulting from osteoarthritis).

A rheumatologist can help sort out the above after you finish assessment with the spine doctor.

An MRI of the spine is helpful to look for protruding discs and bone spurs which may be compressing nerve roots. It can also look for spinal cord compression (also known as myelopathy).

And yes, hyperactive reflexes can result from spinal cord compression and can also be a normal variant.

 

[dldugan]

I am from Lafayette and recently diagnosed. I will never be comfortable telling someone they do have or don’t have ALS as that is the domain of physicians. But I will say my symptoms were different. If you decide you want to see another neurologist IU has a Neurology Center in Indianapolis. There was a long wait to get in at Indy so I made an appointment with a muscular neurologist at Rush Univeristy Hospital Medical Center in Chicago.

 

[wallybird]

I want to thank you all for your advice, thoughts, and good vibes. It means a lot to me.
The weekend was interesting. Occasional foot drop, and every once in a great while with a lot of effort he can get the tips to touch of fingers to touch his shoulders.
It appears the pain is moving up his spine as it was only lower spine hurting to now some Cervical spine pain. At one point in trying to understand what is going through he indicated it even “hurt” when I lightly ran my fingers over his shoulders and such.
Your words have greatly helped me help him in trying to understand his pain and what other things could be happening.

 

[wallybird]

thank you

Thank you for you advice and knowledge on other neuros. We have had the 2 in Lafayette so far, I have a 3rd appointment lined up for him. Your words meant a lot to me.

 

[wallybird]

Worried partner/ update on husband

First, I apologize that I started a new thread. I kept trying to reply on my other and it was not cooperating. I am new to this so I probably better figure it out before I post again. I’m posting about an update regarding my husband and what to do to comfort him and prepare him for whatever he is facing. We went to a spine dr and have received more information.

For 7 weeks my husband has been having progressively worsening symptoms. It started with shin splits and general weakness, not clinical weakness, headaches.We went to our pcp for 3 weeks. Steroid injection in the area for muscle, a trial of lyrica as he thought maybe fibro, muscle relaxers, nothing worked. He sent us to a neuro/pain management dr for help. This neuro did no physical examination of my husband, said he should be on disability, and set out a CT scan 1 month out. (My husband had CT scan and MRI in August after suffering a TIA that didn’t show anything of any worry)

Meanwhile my husband was getting worse. Occasional drop foot, pain increasing to thighs, and in his arm. No longer being able to touch his hand/fingers to his left shoulder. He states if he tries extremely hard he can sometimes get it to touch but it hurts. We searched for another neuro the 2nd neuro did a physical exam. Noted give away weakness in the left arm. He upped lyrica dosage and stated he believed it was stress and fibro. Also ordered another CT scan (same day) that came
Back fine.

Next stop spine dr. that I found and were not referred to. And this is my update. Mris were done. Dr noted a bad disc for the lumbar issues primarily to the left side which would likely explain the leg pain and foot drop. He stated he did not see anything in the spine that would be causing his arm issues.

So here we are. My husband’s arm is actually getting worse and he told me last night he has noticed he is losing his grip now as well.

At rest my husband has always twitched a little bit here and there and the normal jerking when falling asleep. Things have now intensified. I feel like it is almost spasms but he said it doesn’t hurt like a muscle spasm would. I watched his pectoral muscle on the left side twitch while he was standing. At night his twitching/and jerking is extremely bad. I noticed it more on the left side than right. Last night I laid my hand and arm over his, the jerking or whatever you want to call it was bad. I could feel it in his bicep/shoulder where it would feel as though he was jerking away from me and down into his hands where they would almost “contort” during the jerk.

He says he does feel pain in the back, shoulders, etc. I know that it is not typical of ALS, so I feel somewhat silly posting on here, but I literally have no idea what to do for him or to calm him. I can’t sleep because I’m worried about his overall health and well-being. He’s tried to be positive but he feels as though it’s the only thing left. Spine dr stated he was going to do a nerve conduction study referral, waiting to hear for that. Which logically he knows that it will likely hold the answers, but he’s struggling, wondering if he should be even worried about ALS.

Your kind words, advice helped him the last time. I appreciate any updated thoughts or opinions you may have.

 

[Nikki J]

I have merged your threads. This was not closed so replying should have been easy. Open the thread scroll down and you should see a box that says quick reply. You replied successfully before so unsure why it did not work

 

[KarenNWendyn]

His presentation is not typical for ALS. Two different neurologists have not suggested it either.

Your husband clearly has something wrong, and you clearly don’t have the answers you seek. You can always get another opinion from a neuromuscular disease specialist to get their take on what might be going on.

 

[wallybird]

Thank you!. I didn’t think of a neuromuscular disease specialist until you said that.

 

[dldugan]

I mentioned in an earlier post that I was not very satisfied in Lafayette. I made an appointment with Ryan Jacobson, MD, a neurologist specializing in neuromuscular disease. He is at the Rush University Medical Center in Chicago. After the diagnosis he called a colleague in Indianapolis and got me into the Indy Certified ALS Clinic for review/treatment.