unconfirmed diagnosis - is it psychosomatic

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JSide
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unconfirmed diagnosis - is it psychosomatic

Post by JSide »

Hi, Hoping someone can advise?? I have a 33 year old male partner with an ambiguous diagnosis. He has seen four different Neuro's and have varied opinions: 2 said MS was likely, 2 were undecided. MRI frequency was recommended at 3 months by one and 12 months by another. He has about 5 lesions on the brain (no change between 6 month MRI recheck), has had spinal tap and only one marker - which we were told was insufficient to help with the diagnosis.

The first symptom that presented was nausea and vertigo, this led to first MRI. The main symptoms are excessive fatigue (sleeps a full night and then needs 3 hour nap in avo), overheating, muscle cramps (mostly legs and back/ribs), poor memory.

I guess what I am wanting to know is could this be something else? Is this enough to say he has a positive MS diagnosis and should start meds? I am being very harsh on him at the moment because he keeps reading things on the internet about MS and in my mind he is using it as justification to do less and less each day and just sleep more. I was told that the less active an MS becomes, the worse they will get, and much much quicker than someone with the disease who tries to maintain good health the activity levels. I just don't know how much the symptoms are MS or depression?

Can anyone help me please?
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euphoniaa
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Re: unconfirmed diagnosis - is it psychosomatic

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JSide wrote:Hi, Hoping someone can advise?? I have a 33 year old male partner with an ambiguous diagnosis. He has seen four different Neuro's and have varied opinions: 2 said MS was likely, 2 were undecided. MRI frequency was recommended at 3 months by one and 12 months by another. He has about 5 lesions on the brain (no change between 6 month MRI recheck), has had spinal tap and only one marker - which we were told was insufficient to help with the diagnosis.

The first symptom that presented was nausea and vertigo, this led to first MRI. The main symptoms are excessive fatigue (sleeps a full night and then needs 3 hour nap in avo), overheating, muscle cramps (mostly legs and back/ribs), poor memory.

I guess what I am wanting to know is could this be something else? Is this enough to say he has a positive MS diagnosis and should start meds? I am being very harsh on him at the moment because he keeps reading things on the internet about MS and in my mind he is using it as justification to do less and less each day and just sleep more. I was told that the less active an MS becomes, the worse they will get, and much much quicker than someone with the disease who tries to maintain good health the activity levels. I just don't know how much the symptoms are MS or depression?

Can anyone help me please?

Hello JSide, and welcome!

To answer your specific questions in the last paragraph, yes, it MIGHT be something else. If even a swarm of neuros can't agree, he may have to wait awhile for an MS diagnosis. Plus, there are dozens of things that can cause brain lesions, so he should be checked for those & monitored by MRI. Different types of lesions do have different appearances, however.

There will likely be several members who will stop in to give their own lists of testing suggestions. And it's a good idea to look into those, although keep in mind that we're not doctors or medical professionals, and many have their own pet theories. (I should also add a caution about bombarding oneself with vitamins & supplements -- I've had worse reactions to some of them than anything MS has ever done to me. And I'll be paying for my $2,000 worth of blood tests for the rest of my life at $25/month).

But...in case he DOES have MS after all... He can't go wrong by optimizing his overall health with healthy diet choices, exercise, sleep, humor -- stay active. Personally, I'll be eternally grateful that I was NOT diagnosed with MS or treated for it until almost age 53, when I had obviously had it since at least age 23 (maybe earlier). And I had learned to take care of myself.

After a lifetime of occasional weirdness -- including a major vertigo episode, a major Lhermitte's episode, etc. -- I finally decided that if I was going to have to deal with such a wayward body I was going to make it easier on myself. I cut out eating junk food, added daily exercise, lost weight, and by the time of my (surprise, overnight) MS diagnosis I was feeling healthier than I had my whole life!

***Regular exercise will also improve mood & energy levels. I stopped having any problems with fatigue as soon as I started exercising every morning, and nothing could dampen my sense of humor. And that was with a brain full of OLD MS lesions at dx. And black holes. It didn't make any sense to take meds at that point -- it's likely progressive by now and none of my lesions have ever been 'active.'

Also:

***It's good to read about MS to understand it more, but every one of us is unique in our symptoms, presentation, history, future. He shouldn't get bogged down with any one person's experience. Or even any of the common generalizations put out by organizations like the NMSS.

***There's really no rush to start MS meds right now -- they don't cure anything, they don't ease symptoms. They only present the 'possibility' of fewer exacerbations -- which average only about one a year anyway. In fact, they're likely to cause more issues due to side effects. He should research them thoroughly before choosing one and get a definite MS diagnosis first.

As I continue to age and accumulate additional medical conditions, I'm still VERY glad I don't take any meds for MS or MS symptoms that would complicate treatments and testing for those! :smile:

I do wish both of you well. I completely agree with your take on needing to 'maintain good health and activity levels.' If he does that, I think he'll be amazed at how much better he will feel, MS or not.

Good luck to you and feel free to explore the forum and ask more questions. :-D
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: unconfirmed diagnosis - is it psychosomatic

Post by ElliotB »

Has your partner seen a neurologist that specializes in MS. If not, that is who you need to see at this time and the specialist will either confirm or deny a diagnosis of MS. MS can be difficult to diagnose and a regular neurologist may not be able to make such a diagnosis.

"I am being very harsh on him at the moment because he keeps reading things on the internet about MS and in my mind he is using it as justification to do less and less each day and just sleep more."

Whether it is MS or not, something is not right. You can not possibly imagine what he is going through. Let him sleep extra if he needs to. And learn to be more patient with him, and give him the benefit of the doubt that at the moment he needs to do less.
JSide
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Re: unconfirmed diagnosis - is it psychosomatic

Post by JSide »

Thanks for the advice,

3 of the 4 neuro's were MS specialists, but they were still inconclusive. Even the ones that said it was MS were reluctant to start him on meds due to side effects.

We went for a half hour walk yesterday to the park, but he had to rest every 50 metres due to back pain. I just can't believe that it would have progressed this quickly. He was tentatively diagnosed about 18 months ago, and he was very depressed after this, but then he kept up his fitness etc. We went on a Euro holiday for 6 weeks in June/July and were trekking up volcanoes and he seemed fine. But now back at home (in Australia) he has just gone completely downhill. So in the space of about 5 or 6 months he has completely bottomed out in terms of energy levels. I am worried and at a loss as to how to help. After the brief exercise he did yesterday, he will be resting for the next few days!
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Re: unconfirmed diagnosis - is it psychosomatic

Post by ElliotB »

Each case of MS can follow a different path in so many ways. The best ways you can help your partner are to be patient, supportive and learn all you can about the illness. What type of diet is he following? Is he taking supplements? Is he sensitive to heat? The elimination of all stresses in his life is also extremely important.

FWIW, during my 1st major attack, I needed to sleep constantly and was unable to do much of anything else.

What DMDs were your doctor's considering? It seems odd that they would not prescribe one.
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Re: unconfirmed diagnosis - is it psychosomatic

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JSide wrote:Hi, Hoping someone can advise?? I have a 33 year old male partner with an ambiguous diagnosis. He has seen four different Neuro's and have varied opinions: 2 said MS was likely, 2 were undecided. MRI frequency was recommended at 3 months by one and 12 months by another. He has about 5 lesions on the brain (no change between 6 month MRI recheck), has had spinal tap and only one marker - which we were told was insufficient to help with the diagnosis.
Welcome to ThisIsMS. A diagnosis of MS is a diagnosis of exclusion. There are several conditions which can mimic MS. One of these is a vitamin B12 deficiency. Has your partner been thoroughly evaluated for a B12 deficiency? These tests include serum B12, homocysteine, red blood cell (RBC) folate and methylmalonic acid (MMA). Be aware that the laboratory range for B12 in the US is much too broad and the lower end of the range includes many people who are actually deficient. It typically runs from about 200-950 pg/mL B12. However, for someone experiencing neurological symptoms, then you really want to be around 600-1000 pg/mL. That's why it's always important to ask for a copy of your test results rather than rely upon just being told that your "normal."

Please see the following discussion topic for more information on B12. http://www.thisisms.com/forum/natural-a ... 24857.html
JSide
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Re: unconfirmed diagnosis - is it psychosomatic

Post by JSide »

Hey, thanks for replying.
His diet is pretty average, probably not great - fair bit of home-cooked rice and chicken for dinner (minimal vegies), subway for lunch, cheese and toast for breakfast.
He is not on any supplements or vitamins - he used to be on fishoil, vit-D, Exec-B formula, Magnesium - but not any more. He says his test results show he is not deficient in any of these vitamins so he stopped. He stopped anti-depressants about a month ago to see if they were causing him fatigue (it turned out to not be the case).
Yes, he is hugely sensitive to heat. it was about 28 degrees C this afternoon and over-cast when he spent 10 mins leaf-blowing the lawn and had to go have a shower to cool down

Sorry, I don't know what DMD's are, but he is not on any meds for MS. There was talk of some meds but he cannot recall what they were and he says they don;t do anything other than reduce the number of flare-ups, so he deemed them unimportant. One of the docs said there was only a 40% chance of the drugs being helpful anyway.
Rebif was one that was mentioned (he just remembered) - he also has very poor memory and I know you said be patient with him, but he needs to get to a new Neuro cause the last one he was seeing has changed her specialty (from MS to just migraines), but he won't even book a GP appointment to request a referral. He tells me you can't get into any Neuro's for months anyway so why bother.
At what point do you give up and stop pushing someone into helping themselves? He gets resentful when I nag
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Re: unconfirmed diagnosis - is it psychosomatic

Post by ElliotB »

He probably needs to be on a MS diet, a regular diet may not be the best thing for him. There are many available (you can see them here on this site). They all seem to work well for some. Pick one that you think he can follow and get him on it immediately. I also recommend fermented foods (homemade) such as pickles and kefir. He should be TOTALLY gluten free including non-food items (many non-food items contain gluten, as an example, shampoo).

"He is not on any supplements or vitamins."

He probably should be. There are so many to choose from. Do your research and you should be able to figure it out. Some to consider starting with (not in any particular order): a good multi, a quality B complex, curcummin (tumeric), Omega 3, Ubiquinol (CoQ10), and a probiotic to name a few. I take about 30 different supplements. Biotin in high doses should also be considered.

He should probably restart his anti-depressant. And stay out of the heat unless he is wearing a cooling vest.

A DMD is a disease modifying drug, sorry. You should go with him to see the doctors as it seems from your description that he is having memory issues (which can be part of his illness). It is probably true that DMDs probably may simply reduce the number of flare-ups. But even one less flare up is a GOOD thing (you would probably have to experience one to fully understand this).

FWIW, my memory improved after I immersed myself in a healthier lifestyle.

It is odd that a doctor would call the medication "unimportant". I would find a different doctor that is a bit more compassionate and understanding.

"At what point do you give up and stop pushing someone into helping themselves?" That is a good question. Unless he wants to help himself, it will be difficult to convince him to do anything.

"He gets resentful when I nag" Don't nag!

Keep in mind that many do well without doing much of anything. But there is no way to know one way or the other who will do well and who won't.
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lyndacarol
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Re: unconfirmed diagnosis - is it psychosomatic

Post by lyndacarol »

Welcome to ThisIsMS, JSide.

Since you posted in the "Undiagnosed" forum and have asked, "is it psychosomatic," I offer my thoughts for your consideration.

His symptoms (as you listed: nausea, vertigo, extreme fatigue, muscle cramps, poor memory, and lesions on the brain) are common to many conditions. NO symptoms are unique to MS. For examples, his same symptoms are found in people with vitamin B12 deficiency; also, they are found in people with celiac disease (gluten sensitivity); and in those with vitamin D deficiency, and in MANY other conditions.

I believe that if a person sees a specialist about a problem, the specialist will find a solution only in his specialty; if your partner sees a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize." Not only might a GP appointment be more quickly arranged, a GP would consider a wider range of possible causes than a neuro.

Vitamin deficiencies are very common – in my opinion, this is the place to start. Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response – all of which may cause neurological symptoms. Ask the GP to start with these:

Vitamin B12 and folate levels (Other important nutrient levels to measure include: Vitamin D, Magnesium, Iron, Zinc, & Copper)
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Gluten sensitivity is a problem for many people; it can cause neurological symptoms.)
Lyme disease
HIV/AIDS
Hepatitis C and B

Your partner has very real symptoms; there is a real cause for them. In my opinion, his situation is NOT psychosomatic! He needs to find a doctor who is a "disease detective."
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Re: unconfirmed diagnosis - is it psychosomatic

Post by ElliotB »

Adding to my post above, with regard to supplements, forgot Vitamin D (very, very important).

You may want to refer to the 2010 Revised McDonald Diagnostic Criteria for MS:

http://www.nationalmssociety.org/Nation ... -of-MS.pdf
JSide
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Re: unconfirmed diagnosis - is it psychosomatic

Post by JSide »

Hi everyone, thanks for the info so far. I have double checked, and yes, he has had full blood work done a few times - He originally had a Vit-D deficiency that was resolved a while ago with supplements, and no vitamin deficiencies have come up since, so he is not on any supplements. He has been tested for a number of diseases e.g. HIV, Coeliacs, Hep, thyroid issues, etc and come up nil. We have booked into a "good" GP, but there is a 3-week wait for the appointment - I am hoping that he will be a good disease detector and send us to the best Neuro (or whatever specialty is needed).
The extreme lethargy is very difficult to deal with at the moment. When he is not at work he is sleeping. Several years ago he used to be quite active e.g. work, then study, then tennis for many hours several nights per week. I have told him that exercise promotes energy, and that part of his current lethargy could be because he stopped doing all these activities when he had a bad bout of depression, but he believes that MS (or whatever he has) is mostly the culprit.

Does anyone else out there have massive energy deficiencies, but also doesn't have any vitamin deficiencies?

He also has loss of muscle (particularly in left leg) which he is seeing a physiotherapist for. Is MS a muscle wasting disease, or can he build it back up?
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lyndacarol
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Re: unconfirmed diagnosis - is it psychosomatic

Post by lyndacarol »

JSide wrote:I have double checked, and yes, he has had full blood work done a few times - He originally had a Vit-D deficiency that was resolved a while ago with supplements, and no vitamin deficiencies have come up since, so he is not on any supplements. He has been tested for a number of diseases e.g. HIV, Coeliacs, Hep, thyroid issues, etc and come up nil. We have booked into a "good" GP, but there is a 3-week wait for the appointment - I am hoping that he will be a good disease detector and send us to the best Neuro (or whatever specialty is needed).
The extreme lethargy is very difficult to deal with at the moment. When he is not at work he is sleeping. Several years ago he used to be quite active e.g. work, then study, then tennis for many hours several nights per week. I have told him that exercise promotes energy, and that part of his current lethargy could be because he stopped doing all these activities when he had a bad bout of depression, but he believes that MS (or whatever he has) is mostly the culprit.

Does anyone else out there have massive energy deficiencies, but also doesn't have any vitamin deficiencies?

He also has loss of muscle (particularly in left leg) which he is seeing a physiotherapist for. Is MS a muscle wasting disease, or can he build it back up?
I find your comment about your partner's vitamin D deficiency very interesting. Could you share a few more details?

If the reason for his deficiency has not been corrected, it seems logical to me that his deficiency (or an insufficiency) would return when he discontinued the D3 supplement. In my opinion, supplementation will only result in correcting a deficiency temporarily. You say he has had blood work done a few times – has D3 been measured recently?

What was the actual number result of his D3 test? The reference range here at my lab is 30-100 ng/L; but, a low value in this range is probably not "optimal" for someone with neurological symptoms. GrassrootsHealth, a public health promotion group based in California (http://www.grassrootshealth.net/), has created the following chart for serum D3 levels: http://www.grassrootshealth.net/media/d ... -24-12.pdf

Depression, muscle weakness, and constant fatigue/overtiredness (probably because vitamin D3 is crucial for the proper functioning of the thyroid gland) are just 3 of the common symptoms resulting from vitamin D3 deficiency.

Some years before I was diagnosed with MS, I experienced extreme fatigue – every day, I came home from work and was in bed about 7 PM – I was simply exhausted, I had an office job, which was not physically demanding. My vitamin B12 and D3 levels were not tested.
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