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Shanibelle 07-05-2010 07:47 AM

Altered this part of the MS ordeal?
It has been years, and I am back. My husband, in the early 2000's had 3 bouts of ON about 18 months apart. At the time he developed one lesion; the only abnormality on the MRI; VEP and BAER (I think I got those right ;) normal. They found he had cervical stenosis and some other column narrowing.

7-8 years later...half of his body is experiencing a new sensation. The left side of his body (excluding face and neck, more back than front) seems to be overly sensitive to cold. If he sprays on deodorant, it stings/hurts. If he places something cold on him, it feels bruised and slightly painful. The other side has normal reactions and feelings. He IS experiencing typical tingling in his RIGHT thumb, but it coincides (or maybe a coincidence?) with a shoulder pop after exercise.

The left side is not tingling, numb, or feel shocky; it is otherwise altered. I don't know how MS can feel, but I haven't found anything about this sensation. Is this an atypical manifestation of MS?

(I know the neuro appointment is needed, just getting a feel for this as we wait...)

MSJayhawk 07-05-2010 09:20 AM

Re: Altered this part of the MS ordeal?
Hi, in a word- Maybe. If I was putting a probable on it, I would say it is likely MS. I have go through temperature swings quite often. Your husband may have found his lower temperature tolerance. For me, depending on wind chill, I have problems below 52 degrees Fahrenheit. Below that temp, wear a pair of thinsulate gloves.

Although it may seem contrary, when I get a cold sensation in the summer, I immerse my hands or feet in cold water.

Skin sensitivity is part of the problem too. I do not use any spray on deodorant, but you may try a solid or a roll-on. He might also have sensitivity to the laundry detergent or fabric softener. I changed mine in 2003 after rashes started bugging me.

Your husband's neuro pathways have misguided or misfiring messages. This "short circuit" can manifest in many ways. The body's thermostat uses the pathways. Definitely see a neurologist to make sure what is MS and what is not MS. :angel:

MSNik 07-05-2010 01:21 PM

Re: Altered this part of the MS ordeal?
I would have to agree its a definate Maybe. If your husband has had new lesions develope, and you wouldnt know it without a more recent MRi, its possible that certain areas have been triggerd for sensitivity. For instance, I have lost use of my hand and fingers on the left side- its from a lesion on my brain. Thats been determined thru 3 years of tests....because I cannot feel the left hand or fingers, I tend to burn myself or drop things when I automatically go to use that hand; however when it is COLD out, I feel like my fingers are on fire- ultra sensitive and burning, not tingling. They tell me this is a MS thing, due to the lesion and loss of use of this part of my body.

Anytime that sensitivity is an issue, its usually from a lesion in that area of the brain. He really has been fortunate not to have more happen to him in the past few years, but yes, it is time for a MRI and updated Neuro appointment.

Hope it all turns out well for you both- if this is the worst he deals with, he will soon get used to it, or it will be "one of those MS things" which moves on and only lasts a few weeks/ months.


Snoopy61 07-05-2010 02:45 PM

Re: Altered this part of the MS ordeal?
Hello Shanibelle,

What your husband is experiencing is called Paraesthesia (abnormal sensations, sensory symptoms).

I wear socks most of the time due to pain from the coolness of the floor. I prefer carpet over other types of flooring for this reason. Cold water can cause pain for me.

It's also possible to experience pain from clothing, bedding, a light touch or anything that may 'touch' him...hopefully he will not experience this but wanted to let you know it's possible.

Note: my response is based on a diagnosis of MS ;)

Shanibelle 07-05-2010 05:37 PM

Re: Altered this part of the MS ordeal?
Thank you all for your responses. Unfortunately, I wish the answers were different! :)

I find his sensitivity interesting because it happened at the same time and is confined to the back, tricep area, and saddle area. Going to call our GP in the morning to get him set up for xrays and MRIs before moving on to the neuro.

Our son is going to a PEDIATRIC neuro tomorrow to investigate his seizures (he is also T1 Diabetic). I believe our house is cursed.

MSJayhawk 07-05-2010 06:07 PM

Re: Altered this part of the MS ordeal?

Your house is not cursed. I will keep the three of you in my prayers. In your position you are carrying a heavy burden unnecessarily. Caregiver burnout is a real possibility. You might want to seek some personal support from your local community. Otherwise, you could find yourself in your own disabling condition. The word to keep in mind is "Maybe".

Try to stay strong. This web site has boards for your son, too. I would encourage you to seek support on this board and the Diabetes as well as your local support groups for MS and diabetes. While you cannot see it right now, you have many blessings for which to be thankful. You are not alone in your struggle. :angel:

Shanibelle 07-06-2010 06:01 AM

Re: Altered this part of the MS ordeal?
I wouldn't say that Jayhawk. Within a month of moving in I developed Rheumatoid. 4 years later my husband had his first ON (however he did have a Bell Palsy like numbness, no droop when he was 19), 9 years after moving my son gets the diabetes. My cat is asthmatic too ;)

Today I have to call the neurologist and the orthopedic for hubby. He thinks it is moving into other parts; I think he is panicking and developing some phantom symptoms. He just wants a diagnosis so he can move on, but boy, it has been a rough few days. It can be MS, cervical stenosis, or B12 issues. Of course, we are thinking MS.

I joke with him that he is just doing this to get those $20,000 a year designer drugs ;) Nothing says fun like Copaxone, Rebif, or Avonex! Have to have a bad sense of humor to keep me from going nuts.

MSNik 07-06-2010 07:01 AM

Re: Altered this part of the MS ordeal?
dont forget most of the expensive drugs have programs which allow you to pay no more then 50$ per month for the copays..
I make a good living and do not qualify for the low cost drug programs however even Rebif guarantees me no more then 50$ per month- so dont let that deter you.

I doubt very much your home is the problem and if you look at the grand scheme of things the diseases you mention could be substantially worse. Each one you mentioned is life altering, but not terminal. So many people are currently dealing with cancers and advanced forms of Parkinsons, etc- that having RA, Diabetes or even MS is definately a blessing in disguise.

Wishing your family well.

Shanibelle 07-06-2010 05:50 PM

Re: Altered this part of the MS ordeal?
To follow up...I called the GP today and they told me to get the hubby directly to the ER when I told them of his symptoms. Given that it was spotty numbness on the left side I am sure they thought it was a stroke.

Went to the ER and they did a MRI (which surprised me); to check the maybe MS and I am sure to rule out stroke, aneurysms, etc. His last MRI 5+ years ago had one lesion, this one has "multiple" lesions. The ER doctor didn't say how many, but there is obvious progression if there are multiple lesions. We get discharge notes to see a neurologist in 5 - 7 days...HA! August 30th appointment! Going to see if I can do any better in the morning.

And Nikki, I know things can be worse. It is a tad frustrating when I developed RA at 20, disabled by 23; we know not if the husband will be fine in a year or not because MS is so unpredictable; and no child should have to deal with diabetes/seizures. Put it all together it is just not fun. As far as medicine costs, I will have to see what medication he will need to be on and what the co-pays may be. I have been the recipient of low co-pays since RA medicines run in the same range as the MS ones. We shall see!

MSJayhawk 07-06-2010 07:19 PM

Re: Altered this part of the MS ordeal?
When my MS struck badly in 2002, I was sent to the ER where they ran an MRI. I think it is fortunate that your husband was able to get the MRI and need not have to wait longer. My MRI's were 20 years apart. Much can change, so I am glad to see that your husband could count on a few blessings. I hope that you can see a neurologist sooner.

I had a friend in the Tokyo office who has RA. He finally retired to the desert in Arizona. I do not know where you live, but a climate change that works for all three of you might help. I hope I do not offend you by such a statement.

You are certainly right, no child should have to deal with diabetes or seizure or both. I can not speak as a mom, only as a dad. I know how much it hurts when your little one is hurting.

Have you considered a service dog? My service dog helps me walking and he also alerts if I am going to have a seizure. They have service dogs that can work with diabetes and it seems that they really help a child cope. They are unconditional buddies who never judge, just love. Many diabetes alert dogs can be small size, but any size can work. I have a local friend with RA who uses a service dog for picking up things around the house. I wish mine would! Well, at least he picks up his "bed" and moves it!

I am keeping you in my prayers. You are certainly right, a sense of humor is needed to maintain sanity! :angel:

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