Husband just diagnosed

[jenkbusche]

My husband was just diagnosed last week with progressive MS even though hes had so many symptoms for the last few months and him wishing they would go away they only continued to get worse.Im at a loss my husband isnt the same man he was even 3 months ago he can barely walk he slurs horribly he falls daily he is emotionless his facial expressions dont change he never smiles hes been depressed for awhile but the reality of knowing whats wrong has pushed him over the edge it hurts so much to see him this way when I met him he was my big tough dream romantic Italian man and what he has become is so opposite I love this man with everything I am but I dont know how to stay strong for him please help me anyone.

[bree2013]

I'm so sorry for what your husband and you are going through.

Unfortunately I cannot give you any words of wisdom or experience. I haven't even been officially diagnosed yet.

I'm assuming all testing has been done to rule out other things leaving MS as the definitive diagnosis.

Has the neuro suggested steriods or Amprya (sp?). I believe Amprya has helped others with walking issues -- but then everyone is different.

Is he seeing a neurologist or an MS Specialist? This can make a big difference when figuring out ways to treat various symptoms and make a patient somewhat more comfortable.

There are many here who will give you much better advice. Know that you are not alone -- this is a great place to ask questions and get informed.

Bree

[Myoak]

Hi Jen,

You and your husband are not alone. There are many people pulling for both of you. It is wonderful to see the love in your relationship is so strong. You both are very fortunate to have such a strong bond. Right now, you are the stronger one who must not only comfort but also find a way forward for both of you.

Often people with Primary Progressive MS are sent home without much in the way of a treatment plan other than cursory symptom management. Since mainstream MS meds are not approved for PPMS and seldom offered, I urge you to look at alternatives. Start with LDN which is low dose naltrexone. Join the Yahoo lowdosenaltrexone board and begin learning from those who are managing their MS with LDN.

Since LDN increases endorphins even if it doesn’t slow MS at least your husband will feel better which could be a tremendous benefit to both of you.

Some people have good success managing MS with various diets.

First thing to do is instill belief in yourself and then in your husband that there is hope. You can believe it because there are things to try which other MSers are using.
Typically, steroids are used to halt a bad flare-up. Beyond that your neuro is likely not to have much to offer for PPMS.

Do what you can in educating yourself about LDN. I am not a medical professional so all I offer is my opinion. But I have spent literally hundreds of hours reviewing scientific literature plus doctor and patient testimonies about LDN and IMHO it offers a very real possibility for help, especially in PPMS.

In 2008 a Phase 2 trial of LDN in 40 Italian PPMSers demonstrated very good results. The trial was designed to test safety not effectiveness. However, only one patient experienced disease progression during the 6 month trial.

LDN has no toxicity and costs about $35 a month. There has never been a single serious adverse event EVER reported in medical literature from an adult or child using LDN. The tough part is finding a doctor close by who knows enough about it to prescribe it. But they do exist.

Jen, your empathy and love may be so strong that you literally feel the anguish your husband does. The opposite is true, also. When he senses you have hope, he will have hope, too. Be learning. You have the internet and you have already begun using it to find a way forward. I see this is your first post.

You can learn a great deal on this site. There is a lot of valuable knowledge in a variety of threads. Keep searching and as you learn may peace deeply settle within you; even into your very bones. Blessings to you.

[Tomjadg]

Hi Jen

He is not alone. I would be lost without my wife.
She has to do everything I have always done for 30 years because my balance is so bad, and I can spend much less time on my feet.

We have a 100 year old house that I always took care of, but can't do that any longer and have to pay to get things done.

I hate that she has to do so much more, but we deal with it and she is a trooper about it.

Just do the little things to support him. I still make dinner since I am home first, but some days she will put dinner in a crock pot to save me the trouble. That is big.

3.5 years ago, I was walking around Gettysburg with a very slight limp. I am now lucky to walk to my car to get to work. It is a desk job.

Feel free to email me.

[jenkbusche]

Thank you all for your help and support Im just learning all this and its only been a week since he was told its MS but its been months of dealing with the symptoms and everyday its harder is it normal for him to be I guess emotionless is the word his facial expressions never change he just seems to be cold almost and thats so not the man I know he also seems to not grasp onto anything I say hes interested and seems to be paying attention for maybe a total of 5 minutes then he drifts off into somewhere else its so frustrating I just really need some help until the appointments Ive made come which doesnt start for another week I dont how I can go another day without help let alone another week.