Hello and Hubby's symptoms

[annaruddy]

Hello all. I am a 34 year old female and worried about my husband as whatever has him has been progressing pretty rapidly and doesn't go away. He wakes up in the mornings and feels okay but by the end of the day he is sooo exhausted he is miserable. He has weakness and an aching pain like a cold or flu pain in both shoulders, elbows, arms, wrists, hands and fingers. He prefers to hold his hands in fists and he said they hurt constantly. They will twitch and spasm. He also has problems getting his hands to do what he wants them to do. The other thing is this past week he has been having pain and weakness in his knees and going down to his calfs and he has numbness and pins and needles feeling. This has been progressing to the point now where he doesn't trust putting much weight on his knees and has lost his balance alot this past week. He has caught himself and not fallen but still. For someone that has been steady on his feet all of his life this is worrying me. He still goes to work every day and comes home and is still driving and determined to do things for himself. He can't walk very far, he can't sit still for very long and I am scared for him to be by himself and scared he might fall and hurt himself. His pain comes and goes but his weakness and all stay and the left arm, and both knees now have been only doing it this week and has stayed and not gotten any better. I have been tying his shoes for him because his fingers hurt to even try to tie his shoes so instead we got him some velcro shoes now.

He has seen a Neuro and his brain mri was abnormal but they didn't say what other than he doesn't have a mass or tumor. We are waiting for insurance to approve 3 mri's for his back, cervical and lumbar regions. His bloodwork was normal at the emergency room and he just shouldn't be getting exhausted like this. This is so hard on me and I am not sure what is going on. The neuro said he isn't ruling out multiple sclerosis but he hasn't said anything about ALS. Another thing is he isn't sleeping good at night and sometimes he doesn't sleep at all. It also takes 2 Loritabs for him to even get comfortable enough to sleep. He can't stay on Loritabs and work while we wait for a positive DX about what is attacking his body. I am sorry if I seem to be venting but this is just confusing the heck out of me.

Thanks for listening,
Anna

 

[Al]

Hi Anna. Just wanted to say hello, welcome and I am sorry you have to be worried about your husband. Wright is the guy that gives the best advice about options as far as symptoms go. I will say that the numbness, tingling and hand pain don't sound like ALS to me. Some of the others may have opinions or may just offer support.

AL.

 

[Limana68]

HI Anna
Sorry to hear about your hubby. I have been having the same problems with my hubby, apart from the tingling in his hands, he is tired all the time, lost weight, speech probs and aches in his legs and arms, and has had twitches, but not really any probs with his hands, only 'clumsiness'as he calls it.
Our neuro suspects motor neurone disease but he has to have his mri this wk to rule out anything else, ie MS, but he dosnt believe its MS, due to symptoms.
Its a real worrying time and the diagnosis and investigations seem to take forever!
I know how you are feeling! Hubby and me just want to know what the diagnosis is, even if its bad.At least then we can deal with it. Its the practical things too isnt it, re work, my hubby had to give up work and has been signed off by the doctor now and I have had to get my hours changed at work as hubby cant cope with our 2 young children for long.

Good luck with everything, and feel free to vent! Thats what this great site is all about!

Li xxx

 

[lizzy]

Hi Anna,
Welcome to the site, although I'm sorry you have had to seek it out. You will find there is great support here with people in similar situations.

I am in the same boat. My hubby and I are in our 30's and he has been unable to work for 3 years now. No diagnosed yet but a new neurologist has now said everything has been ruled out and he suspects he has a rare MND, more specifically ALS. We are waiting the testing and follow up appt in November and the wait is torturous.

My hubby also has lost his fine motor skills in his hands and his legs are weak and unreliable, although he doesn't experience any numbness or tingling. His arms and legs constantly twitch and cramp and he uses a cane to stay steady now. He's exhausted every day and even after he was diagnosed with severe sleep apnea, it's the physical exhaustion from just taking a shower or walking up the stairs that gets to be too much. He also has bouts of insomnia and doesn't sleep for days sometimes. It's so hard to see someone you care for so much going through this and not be able to help.

I'm not a doctor but I have seen many and researched a lot over these last 3 years trying to figure out what is wrong with him and from what you said about his sx I wonder if the tingling sensations he experiences may be related to a spinal disorder, rather than a neuron disease? I hope this is the case for you and I hope you are able to get a diagnosed soon.

Did they tell you how his MRI was abnormal? What showed and what area of the brain did it appear in?

My son is being investigated for chiari malformation which is another rare disease that can cause many of the same symptoms as what you have described as well. If I have learned anything over these years its that there are so many syndromes and diseases that vary from curable to serious and terminal that fit for these types of symptoms.

Don't give up hope, try to have patience although easier said than done and remember that you have support here through this journey and diagnosed. Feel free to vent and ask questions, it may bring you the strength you need when you need it, it certainly helps me.

 

[brooksea]

Hi Anna,

Sorry your husband is having these symptoms, but I have to agree with Al, they don't sound typical of ALS.

The MRI being abnormal - I would ask more questions of the Neuro about that.

Good luck!

 

[joelc]

Has he been tested for hypothyroidism? The symptoms sound a lot like what I was having about 8 years ago and the problem turned out to be my thyroid.