Husband dx with Primary Progressive MS

[Scully]

Hello,

My husband has recently been dx with PPMS. He started with a limp about 2 yrs ago. I only really noticed it becoming more frequent last July. I kept asking him about it and he said it was nothing. He is 46 y/o and I figured a big boy so I didn't do anything about it. Well, 2 months ago I asked him about again and why he wasn't exercising. He said when he exercises he gets a cramp in his foot. He also gets fatigued. He says he feels he has aged 20 yrs in the last 2 yrs. I made an appt with our GP. He referred him to a Neuro. He had an MRI which showed inflammation spinal cord, some lesions on temporal region. Had Lumbar tap which showed high White blood cell count, elevated protein in brain and some leakage (?). Cultures came back negative. We have been referred to a MS Specialist in Marshfield WI (we live in Green Bay). The neuro and our GP both believe the closest dx is Primary Progressive.

Sorry, I babbled so much. My question is:

We are really learning all we can before his 7/8 appt. However, the powerful drugs they use for this disease is something he is absolutely not interested in at all. He mentioned the only thing he may consider for treatment is LDN.

I am concerned about the progression of this particular MS. Can anyone enlighten us. I am finding so much info out there and I really would like to know as much as I can. I know everyone is different but I would like it if I could get some response about Primary Progressive MS>

Thank you so much.

Dawn, Green Bay

[bromley]

Dawn,

The following could be of interest.


http://www.mydna.com/resources/meds/new ... msdru.html


Bromley

[Scully]

Thanks, Bromley.

If anyone else would like to respond that would be great. Anyone out there dealing with this particular dx?

Dawn

[DenverCO]

Hi Dawn

I used to hear PPMS and think that meant a patient was going to tank rapidly, end up in the worst possible shape, and have to accept it because there were no drugs for that form of the disease. Hopefully, you don't have the same perception because it's an inaccurate one. PPMS can be a steady progression that is slow.

I was dx RRMS in 1998, but I've never had another exacerbation since that first one even though my condition has steadily declined. The more I learn, I think I may have PPMS (or SPMS).

It's alarming to read that there are no drugs for PPMS. I'm not so sure about that. They just don't do trials on that group because it's harder to measure the effectiveness of the drug if they aren't counting exacerbations as a measure. That is changing though.

As far as the question in your post, I would learn as much as possible about spasticity. If your husband feels like he's aged 20 years in the last 2, I suspect he may have that symptom. Mine got way out of control before I even knew that's what it was. I thought I was experiencing the flulike symptoms they warn about with interfuron drugs, so I never complained about it to my doc. I thought walking around bent over and feeling 100 years old was just the price you had to pay to be on Betaseron.

I recently read an article written by an MS expert that said in many cases what is diagnosed as "progressive MS" is actually mismanaged spasticity.
That's my 2 cents worth.

Another bit of advice is to work hard at not letting the dx do a number on you emotionally. That sounds so obvious, but that's the biggest challenge in the beginning. Make sure you have a neurologist who stays current on MS info and who has a positive, hopeful attitude. He/she is your lifeline in the beginning, and you need to align yourself with the right vibe. Also, I would be selective about who you tell. The public has all sorts of impressions about MS. You will be an expert on the disease sooner than you think. At that point you can disclose it if that's what feels right for you, but until then you are somewhat vulnerable, and you don't need people telling you about their Aunt Mable dying in a nursing home from it. I think people are trying to bond and relate when they do that, but avoid giving them the opportunity. It's very bad for your psyche right now while you are in this vulnerable, information gathering stage. Besides that, it's NOT GOING TO HAPPEN.

Wishing you and your husband all of the very best.

Rebekah

[Scully]

Thanks Rebekah. You had some very kind and smart words. I have already learned not to tell certain people. There are alot of negative people out there. Even family, believe it or not.

I am learning daily and this message board is very helpful and informative.

Thanks again,

Dawn

[jdamon]

I found also in the beginning that talking about it to un-MS educated people set me back emotionally. While I'm RRMS not PP the dx for me was devastating. While I relize that most people have good intentions when talking to you or trying to cheer you up, the reality is unless they have MS or have a close family member with MS they don't have a clue what they are talking about. Close to 80% of the time in the beginning when someone tryed to "cheer me up" they actually made things worse. This is where education and experience came into play. The more I learn about this desease and the more people I talk to, the easier it gets emotionally to deal with this. Now when someone has something to say about their great aunts, sisters, son in-laws wife with MS i'm able to chuckle and walk away. I've read a lot of books and visited a lot of websites but needed more so I recently started visiting this forum. There is just so much info from real people that you we just can't or ever will find in books. For me so far the best medicine has been a positive mental attitude, not easy but oh so powerful. I wish you and your husband the best .

[HarryZ]

Dawn,

My wife has had MS for over 30 years (SPMS now) and I certainly have an appreciation for the anxiety that you are feeling at this time now that your husband has been dxd with PPMS. The different emotions that you are going through can only be understood by someone who has experienced them.

Like you have already read, PPMS has had very little research done on it in the past due to its very nature and difficulty in assessing the results of any medications taken for it.

You will read that of the many medications taken for MS (both approved and off label symptom treatment) the effect they have on the patients varies tremendously. For one person a drug will help and for the next patient, it will do absolutely nothing! Some patients have to try several drugs before they find one that may have positive results.

Hopefully your husband's neuro will not only treat the MS but the patient as well. I recommend you read as much as possible about the various treatments available out there and together with your husband and his doctor, discuss what route to take. This won't be an easy task and the road ahead could be bumpy because of how the disease will effect your husband and ultimately you as well.

I can assure you of one thing.....all the readers here will do their best to try and help you and your husband by relating their experiences and knowledge. They are a great bunch of people!!!

Harry