My 53 yr old husband tested positive for HD almost 20 years ago. (He took the gen. test.) He is now experiencing leg-calf spasms and leg weakness. He had a brain MRI recently that showed a normal brain! Because of this clean-normal MRI he thinks the leg spasms and weakness are NOT related to HD, but I disagree. Is there anyone out there with HD that had leg spasms and weakness without any other physical symptoms of HD????
My husband also suffers with chronic lower back pain. I think we need to go to a HD doctor and he wants to go to a Neurologist.
Also can someone with HD have a normal MRI brain scan but still experience the beginning symptoms of the disease????
THank you.

Hi!

My spouses experience is just what you described. Leg spasms and a few other symptoms, and a CAG of 41. She is 54 years old and the symptoms have just started to emerge. She had an MRI two years ago and it was fine even though she was showing some early symptoms. Recently the neuro said that she had clinical onset.

What is your husband's CAG count?

Norman

44 I think. Maybe 42.
I believe he has been showing emotional and behavior signs for years but with chronic back pain and high use of pain medication it's hard to know for sure. It's so great to have someone-anyone respond because my side of the family doesn't know and most of my husband's side doesn't like to talk about it.
Did your wife have any behavior changes?
KK

Thank you Norman for responding to my post. (I forgot to thank you and use your name.) What other physical symptoms did your wife have and how is she now.
KK

I think it depends on who reads the MRI. The radiologist that read my husbands MRI five years ago said no atrophy but when our CEO nuero read it she determined there was atrophy in the executive area.

That's what I was afraid of. My husband thought he had a stroke last month so the next day we went into Emergency and they did a brain MRI right away.
He told the Emergency doctor to look for brain problems etc., but of course they were looking for symptoms of a stroke not HD!
Thanks for responding to my post.
KK

Hi again,

In retrospect there are a number of symptoms that I think my wife was demonstrating.

First there was a problem with auditory processing which for a number of years we thought was deafness, but I noticed that if I didn't repeat myself she answered my question. Then there was a sudden high sensitivity to smells and things she previously found pleasant such as perfume.

Then a few years ago I found her getting very irritable over small insignificant things. And she would go on and on about something not being able to let the subject drop. For instance, we had a kettle that the auto-off switch was broken and she would go on and on about returning the kettle to the store. There was no recognition that the kettle was two years old and had been used daily.

I found that when she was (is) tired that her temper can get out of control and her language becomes quite aggressive. This has been very hard on our children and myself. Another thing has been excessive head scratching, she says her head is just itchy but it seems like more of a nervous obsession. Lastly I have noticed that she has less control over arm movements, like not being able to estimate where her arm is in space so that it just smacks down on the table or sofa.

There are many more things and individually they just seem small but when added together it paints a bigger picture of early symptoms.

She has been on Creatine and a few other things but without my help to make sure these are available to her non of it would happen.

Hope this helps, feel free to pm if you like.

Norman

When your husband had the first clean brain MRI was he having any physical symptoms of HD?
Did you have the second MRI because your husband was having symptoms?
Does your insurance pay for these MRI's? Our regular doctor who doesn't know my husband tested positive for HD would not do a brain MRI only a back MRI.
I can see it's time to get a good HD doctor but it's a hard step.
Thanks for your input.
KK

KK - my "HD specialist" IS a neurologist!

Perhaps if your husband has no problem with seeing a neurologist (but does have a problem with seeing an "HD specialist" - the prospective neurologist could be questioned in private as to his/her HD experience...

jl

I'm not sure you can rely completely on MRIs about HD. My brother was showing many symptoms of arm flailing and depression for several years before getting an MRI, and his MRI looked "normal" to the person who read it. Yet you could obviously tell by then he had HD. He was tested and given disability very quickly.

I understand now that my husband needs to see a Neurologist. We have been living for years waiting for the other shoe to drop. But my husband's chronic back pain has been the biggest problem for a long time. Because of his back problems we haven't really faced the HD. The part that we don't understand is how and why the leg spasms/weakness/numbness came on kinda suddenly after he had saline injections in his back. He believes that is the reason he is having all these additional problems now.
Is there anyone out there that had leg problems symptoms that came on quickly like my husband's????
Thank you.

I hate to say as much but here goes. HD caused phantom pain for my wife. She had been in a car accident and she really wasn't hurt. She was told she was by a doctor though.. and for insurance reckoning, the doctor labeled her as having 10% or less loss of function in her back. That means basically not hurt. For 15 years she said her back hurt. Also she also had a "little tiny cold" always... and a "little tiny headache" always. Once she was given Risperdal she never had any of those things again. Risperdal is not a pain medication. It's an anti-psychotic. She was prone to fixation on various things and I am sure these were among the fixations.

No matter what..MRI's are not a reliable method of tracking HD. Some people will show as normal and some will show change. They don't show things down to the cellular level where HD truly exists. That's why we keep looking for reliable bio-markers that are unique to Huntington's disease. It may show as eye tracking or missing or elevated enzymes or proteins in the blood or whatever. We don't have one yet. But MRIs as they exist today can't be relied upon. Most people by the time they think they want these already are dealing with symptoms... and those are pretty much good enough gauges as to ones progression. I asked the doctor at the COE about what kind of time line for T we were looking at, She didn't get into specifics. She just said in the next two years you are going to see major changes. I did. The doctor knew where T was in progression, and where it was going, and about how much time it would take. No MRI is needed for that. Where we do need something to track progression is in the asymptomatic to see if a certain compound is working at that point. I find MRI stories unreliable and have not seen them yet prove or disprove anything because they are all over the place in what is seen or not seen in comparison to what the person reports as the symptoms.

Eric, I know this is probably why you didn't want to say that about T. But do you think that a person (such as myself) who has suffered chronic pain (fibromyalgia) for years and recently has had muscle tightness in my legs so badly that I needed to begin taking a muscle relaxer might just be helped by a med for psychosis? This past week I tried so hard to walk each day on a real walk of a block or so and back. By Wednesday only the third day, my legs and hips had frozen up with pain and I had to rest for two days. Made me so mad. If it were in my mind, I'd be glad...haha...then it might be fixed.

Alice - I understand the advisability of a muscle-relaxer, in your stated situation.

I guess I'm just not "getting" the connection with a "psychotic med"...

Is there a medication that addresses both?

jl

Alice,
I understand what you are saying. You want relief from the pain. If it is phantom pain, like theresa was having and an antipsychotic helped, you'd be willing to try that to relieve the pain. I am sorry you are in so much pain. My brother never had any pain from HD, nut he also had no pain conditions like f9bromyalgia prior to Hd. I know that Yoga can be helpful for fibromyalgia pain. Maybe a yoga , with the right instructor or massage therapy would be helpful for your current pain.

Paula

My husband had an MRI over 5 years ago so his HD neuro would have a base reference point once he started to show symptons. THe neuro was suprised at the results. My husband, who still shows no physical signs, had an MRI that indicated he should be showing many symptons of HD.
Guess that is why an MRI should not be used without other indicators.

I had lots of muscle spasms in legs, etc that affected my walking and when I started Lamictal ( a mood stabilizer that helps with HD symptoms), my spasms improved dramatically and I could move and walk.

Margie
pHD

Paula, thanks for understanding what I'm awkwardly trying to say. Margie, thanks for the suggestion. KK, I will be interested in what the neurologist does for your husband, some good, I hope.

Thank you Margie for your info on Lamictal. And thank you Paula for the kind words. D is hoping that his leg spasms&weakness is from some other cause-like his bad back, recent shots. Do/Did you also have leg weakness and did the spasms come on you kinda quickly?? D doesn't have any problems walking but he is weak and tired a lot of the time.
When he shakes his calf using his hand the calf muscle is really relaxed and floppy,we don't understand why this is happening.
I am trying to get D into a HD Neuro.! (Not easy.) He has always been afraid of telling any doctors or facing this road.

KK

Five years ago my husband was having bouts of forgetfulness and felt "wobbly" and became convinced he had started HD symptoms. We had an MRI that turned out normal and his symptoms "disapperared very quickly. Sometimes even if it isn'[t a good indicator, it can be helpful. Also, he had backpain and we did a bak MRI for that last year and he has a degenerative compressed lumbar disk for which the back surgeon said surgery wouldnt help. He has found the chriopractor very helpful.