Does my husband REALLY have MS?

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Does my husband REALLY have MS?

Postby ebrownkirkland » Wed Dec 05, 2018 8:17 am

Good morning. I am writing because my husband is wondering if he actually has MS. He has been formally diagnosed by two neurologists, both of whom are MS specialists. He had one O-band in his spinal fluid along with high protein, and his MRI also revealed "Dawson's Fingers." His first symptom was bladder issues (and he went to a urologist about a year ago to confirm that he was not emptying his bladder all the way--he has quite a bit of urine left in his bladder even after he uses the bathroom). From there he went on to have spasms in his feet. Now he is having issues with one of his hands--it spasms and "locks up" on him occasionally--the last time it did it it lasted about 15 minutes, and he is also experiencing frequent fatigue. He has lost feeling in one of his legs at one point to the point of falling when he went to get up from a seated position. He also has what one doctor has described as "optic neuritis" (though his test for optic neuritis was "borderline"), but the second MS specialist deemed as an ocular migraine. Anyway, the first MS specialist said he had relapsing remitting MS and prescribed Tecfidera; the second MS specialist told him he had primary progressive MS and prescribed him Ocrevus. He went off the Tecfidera and has had two infusions of the Ocrevus already with a third scheduled for the end of this month. He is wondering if he really does have MS because even though his MRI shows "Dawson's Fingers," he has had no new or active lesions since his diagnosis about a year and a half ago.

I, on the other hand, was also diagnosed with MS a couple of months after my husband and am on Tecfidera as I have been told I have relapsing remitting MS, and I have had a large active lesion (I have many other smaller lesions but the large active one was about 1 cm). Since starting the Tecfidera I have had no more active lesions--that is as of June 2017 (my next MRIs are due in March 2019).

I know that no two cases of MS are the same, but is it unusual for my husband to show no new or active lesions and no lesions in his spinal cord since he was diagnosed in May 2017 even though he is continuing to go downhill? I have had symptoms for years (8 or 9) but his MS seemed to come on suddenly and doesn't seem to be slowing down, given the latest issue with his hand. Thanks for your opinion.
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Re: Does my husband REALLY have MS?

Postby ElliotB » Wed Dec 05, 2018 9:31 am

Sorry to hear your husband is not doing well.

"is it unusual for my husband to show no new or active lesions and no lesions in his spinal cord since he was diagnosed in May 2017 even though he is continuing to go downhill?"


A good question to ask your neurologist. Some people have more active cases than others and advance faster than others. As you are aware, no two cases are exactly alike. Lesions or lack thereof don't necessarily correlate to symptoms or the progression of the disease.

Based on your description, it appears your husband does not have RRMS but rather perhaps PPMS as per the diagnosis of the 2nd neurologist you saw.

FWIW, I have transitioned from RRMS according to my neurologist and showed no new or active lesions in my last MRI about 1 1/2 years ago compared to the original MRI used for diagnosed about 5 1/2 years ago.
Last edited by ElliotB on Thu Dec 06, 2018 8:50 am, edited 1 time in total.
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Re: Does my husband REALLY have MS?

Postby Scott1 » Wed Dec 05, 2018 2:12 pm

Hi,

I feel for both of you having to deal with this. I'd say, yes, you both have MS.

When I was diagnosed in the early 1990s, the definitions were not as refined as today. I was just diagnosed as clinically definite MS.

This classification between RRMS and PPMS isn't really that old. It is an evolving diagnostic distinction. The names come from a series of reports that began with the original in 2001. The latest version was released in 2017. It has taken on a life of its own as a way of clinicians describing symptoms. The contents of the report are now called the McDonald criteria after the lead researcher of the first report.

An alternative way is to say you have demyelinating MS and/or neurodegeneration. After an initial phase is over, there just isn't a good correlation between lesion development and symptoms. A neurologist can't look at an MRI and say "I know what will happen next" because lesions don't predict outcomes in many cases. They can only point to existing symptoms.

Most of the MS drugs are some form of anti-inflammatory. If "neurodegeneration" advances, despite the drugs, then the clinician is now more likely to say the MS is a progressive form. Unfortunately, these classifications are fairly subjective and two different neurologists might come to differing conclusions.

If it is a progressive form, then they might measure changes using an EDSS scale or another disability measure. The downside of all this is you are reduced to acronyms and scores. It is descriptive in a clinic but not that helpful to the patient.

I have mentioned what I do, that I feel helps, in the past and will do again if you like. As a couple, you could make lifestyle changes to see if that helps .

I'm agnostic about the medications because some may work for some people and not others. It will ultimately be the sum of all the things you do that will make a difference rather than just one approach.

Regards,
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Re: Does my husband REALLY have MS?

Postby ebrownkirkland » Thu Dec 06, 2018 12:13 pm

Thank you, Scott and Elliot. I realize that neither RRMS nor PPMS is good to have, but PPMS is the more devastating form, and I worry about his health more than my own. That I know of I've only really had two attacks, per se, although the second one was worse than the first. And it was the MRI after the second one that eventually led to the diagnosis of RRMS. But with my husband, he just seems to be going steadily downhill, which worries me, and I have no idea how much longer we will have before he's in a wheelchair. Right now we're both walking just fine, and we are both able to run, too, but he seems to be declining given the number of new symptoms that seem to be cropping up. We are both in relatively good health (he's healthier than I am--eats better and whatnot) but it's very stressful not to know what the future holds. We just sold our house and I wonder if we should buy a house that's all on one level or just go for the house that suits us now which is one that has rooms on different floors. The latter would be my dream house, but if my husband and I can't navigate it, it will be more of a nightmare.

Sorry--I'm rambling. Just a bit stressed out is all. I just cannot believe that we are both dealing with this. Anyway, thanks for listening and for sharing your opinions.
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Re: Does my husband REALLY have MS?

Postby Scott1 » Thu Dec 06, 2018 12:57 pm

Hi,

If you are both still able to run then you are way ahead of me.

No one has ever described me as having a particular form of MS. I've obviously oscillated between being very bad and pretty good. As I constantly intervene by using exercise, massage and dry needling for my muscles plus supplements, valacyclovir and dantrium for general health and spasticity I just don't know where I would be if I stopped. Running is just something I cannot do. Still, no one I meet realises I have any problem at all.

You may not be in as difficult a place as the diagnosis implies.

Apart from the bladder issue, what other symptoms are causing him the most trouble?

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Re: Does my husband REALLY have MS?

Postby ebrownkirkland » Fri Dec 07, 2018 6:28 am

His main issue is with his foot. Both feet, really, but one causes him more problems than the other. His foot is constantly cramping up on him. It seems to be worse in the evenings, but it can happen during all times of the day. It looks like a terrible charlie horse. I get them too but not to the degree that he does. Then there are the issues with optic neuritis (although the second neurologist thinks those are migraines). He loses vision in one eye occasionally, and that's pretty bad. It happens pretty regularly after he works out, which is why I believe it is optic neuritis and not a migraine. That's what led him to the neurologist originally--I thought he was having migraines, so I sent him off to my neurologist. That's when he was sent for an MRI and they found the "Dawson's Fingers," which I guess is pretty specific for MS. Lately his hands have been cramping up on him as well. But, as I said, what causes him the most problems is his foot/feet.
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Re: Does my husband REALLY have MS?

Postby ElliotB » Fri Dec 07, 2018 6:54 am

What kind of diet do the two of you follow? This natural product may help your husband with this cramping issues:

https://www.amazon.com/DEE-CEE-LABORATO ... ormula+303

It is inexpensive, only $16 for a small bottle and probably worth a try.
Last edited by ElliotB on Fri Dec 07, 2018 7:15 am, edited 2 times in total.
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Re: Does my husband REALLY have MS?

Postby Zyklon » Fri Dec 07, 2018 7:10 am

ebrownkirkland wrote:His main issue is with his foot. Both feet, really, but one causes him more problems than the other. His foot is constantly cramping up on him. It seems to be worse in the evenings, but it can happen during all times of the day. It looks like a terrible charlie horse. I get them too but not to the degree that he does. Then there are the issues with optic neuritis (although the second neurologist thinks those are migraines). He loses vision in one eye occasionally, and that's pretty bad. It happens pretty regularly after he works out, which is why I believe it is optic neuritis and not a migraine. That's what led him to the neurologist originally--I thought he was having migraines, so I sent him off to my neurologist. That's when he was sent for an MRI and they found the "Dawson's Fingers," which I guess is pretty specific for MS. Lately his hands have been cramping up on him as well. But, as I said, what causes him the most problems is his foot/feet.


I used to have lots of feet cramps in the past. After increasing my magnesium intake, almost no cramps. Increasing water intake is another good idea.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
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Re: Does my husband REALLY have MS?

Postby Scott1 » Fri Dec 07, 2018 2:50 pm

Hi,

Let's deal with the foot first.

Although he cramps in the foot there can be a lot of other parts of the leg involved. To walk, you want your foot to land on the heel, roll through the foot and spring off the toes. Whilst this happens you want your leg to be in line and supple. If not, there's a subtle twist somewhere. If he can still run, then I presume it's not so bad.

In the back of the calf there are two muscles. Sometimes when the leg is well defined you can see them. They need the fascia between them to be supple to allow the muscles to move.
Under your foot are a series of tendons that can get quite tight. Between each toe there is a webbing of fascia and muscle that extends back through the foot. That all needs to be flexible.
In your backside there are a lot of muscles that constantly adjust to keep your pelvis even whilst your legs move. If they can't operate properly then the strain will show somewhere else. The most important ones are glute med (possibly very weak) and the external rotators that are located deep inside. Periformis is the main one to focus on there. I'm guessing, if he can run, that his hamstrings are ok.

If we start at the foot, try putting a small bounce ball, the size of a marble under the front of the foot between the tendons of each toe to stretch all the fascia and muscle. Do it every day. Take a solid rubber ball about the size of a tennis ball and roll it under the foot whilst pushing down on it. In a perfect world, I'd suggest he starts doing the reformer leg and footwork series in a Pilates studio. That routine includes a range of calf stretches. Less effective but similar stretches can be done by standing on the riser of a step on your toes and dropping the back of the feet down. With any of these, the technique is critical. If it feels easy then you probably aren't doing it correctly.
If Pilates is a choice, try doing an exercise called "parakeet" on a cadillac bed. That will really challenge the feet and you will know if there's a twist in your leg. He may have to work up to it.
He sounds like he could use a trigger point or sports style massage. If someone can get in between those two calf muscles and stretch the fascia it should help. A masseur can test how flexible his ankle really is by massaging the area between the obvious ends of those muscles and the ankle. If he's like me, it really hurts!

If we move up the leg to the glute med, get someone to massage the glute med to see if it's tight. A good masseur can check the periformis as well. If he is still able to run hopefully they won't be a problem. I used to get a shocking cramp in the muscle that runs along the side of the shin bone because of a tight periformis. In the end, I got a cortisone injection straight into the lateral part of the periformis and the problem went away. They're a long way apart but one thing can cause a problem somewhere else.

Stairs and steps make an excellent gymnasium. If you can both run, why plan to avoid them?

If his hands are cramping, get the massuer to open the shoulder blades. He would be face down with his arm in a chicken wing position on the small of his back. That will make the shoulder blade pop up and then it can be gently massaged to open more. There are so many nerves from your spine that pass under the shoulder blade and down the arm. You don't want a bit of tightness compressing them.

I am also a huge fan of dry needling. All it does is create micro tears in the fascia but that's enough to release tight muscles. You can't, of course, do that and then just sit in a chair. You have to be active to make those tears bigger till a better range is established.

The vision is not really my area. I have been taking valacyclovir for years and I just don't have those sort of problems. Shingles, which we can all see, is caused by the blistering of nerve endings by a herpes virus (chickenpox). That medication will help that. I often ask myself why the nerve endings inside our body can't also blister and wonder if it causes some optic problems or nerve pain.

Regards,
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