4 years - no answers

[laskawolf]

I will try to be brief, but thorough. My husband has been sick for at least 4 years, meaning obviously sick for 4 years. He has been getting progressively worse during that time with shorter periods of worse then better bought on by weather changes or stress or fatigue. The drs suggested Multiple Sclerosis, ALS or Parkinson's. An MRI came back negative, he could still have MS, but the chance is small. Some of what he has seems very much like ALS, but a few symptoms seem off like numbness, bladder urgency and vision and cognitive problems. Physical symptoms have been occurring for at least 4 years, mental at least 1 year. He had a negative MRI one year ago, and an inconclusive, needs to be repeated EMG also 1 year ago.

His symptoms include

tremors - right arm can spread to body and head
right side of body is weaker, face sags, leg drags
extreme fatigue
severe itching and skin sensitivity
severe pain
muscle cramps
muscle spasms
fasciculations
muscle weakness
breathing troubles uses a CPAP at night like for sleep apnea but he doesn't have that
trouble eating (not sure if it's fatigue or muscle weakness or both, have to cut food small)
constipation
bladder urgency
double vision
confusion
forgetting things or getting lost, not knowing where he is or what just happened, not all the time
abnormal or excessive emotional response
leg muscle mass is much smaller than upper body - however he doesn't use his legs much

What does this sound like to you?

 

[crystalkk]

I'm sorry for what you have been going through, 4 years is a long time. When you say inconclusive emg do you know what the results
were? Is he scheduled for another one soon.

 

[nika]

I am so very sorry to hear about what you have been dealing with for the past 4 years. Here is a link maybe talk to the doctors about this as a possibility

http://www.neurologychannel.com/huntingtons/symptoms.shtml

 

[laskawolf]

I have no idea if they tested him for Huntington's, would that be a standard test in this situation, it seemed like they tested him for everything! He had a CT scan also and that was normal as well.

As for the EMG, the dr who did it told my husband that it was inconclusive and would need to be repeated, mainly lower body I think, my husband was in so much pain I think it interfered with the test. Apparently the teat is not supposed to be real painful but for him it was excruciating. However the neurologist we were seeing had the results written down as no obvious degeneration just generalized muscle weakness, with no mention of needing a retest.

We just moved to a new state and are getting set up here, so we haven't seen a dr yet. Hopefully soon.

 

[Just J]

Laska, my husband had onset symptoms nearly 5 yrs ago and has had several mri's, lumbar puncture, testing for Lyme's diseases, and EMGs. PLS is the current diagnosed by elimination though he has gotten considerably worse lately and will have another EMG next week to hopefully rule out ALS. I know that it is a frustrating process. If you are not getting the answers or communication from your Dr then chang doctors. We went to about 4 different docs before finding our guy. We didn't get the answers we hoped for but we are getting answers....not mysteries. Hang in there.

 

[olly]

hi laskawolf.
there is a blood test if there is a strong indication of huntingtons being hereditory as it usually is.
though there can be sporadic cases,it has to start somewhere.
from what i read it can take several years for mri findings to show up,dementia and cognative problems develop at a quicker rate than the neurological/physical symptoms.
definatley ask about it being a possibility even if theres no family history.