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Old 09-30-2012, 04:13 PM   #1
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Becky1971 HB User
Still Waiting, new issues and venting.

I was waiting for my Financial Assistance app for OHSU to be processed, ( So to get an MRI to check for MS) and then it turned out I didn't send in my taxes from last year. I was so crushed and so frustrated. I know to be very thorough and went over everything a several times, how I missed sending in those I don't know. It's frustrating to not have my brain working at it's usual ability.

I have had other issues come up, my right ear has been sensitive to certain pitches and tones at certain levels. Often to the point of pain, when other people don't even flinch. I use to wake up to numbing in my head and arm, and now it's down to my hip. And then I found that I have vaginal numbing. This is very upsetting, just makes me very sad. The thought that this could be a part of my future.

I'm still very confused about everything that's going on. it seems like too much to be MS. (I previously have shared that I have pressure and pain on my right side of head, laying down, leaning forward, or leaning back is worse, I have had something up with my eye on that side, blurry, and maybe peripheral issues but I'm not sure. I feel like there is something in the way, but I see. I have my right side is duller in pain than left, and it varies in degrees. My balance is off. My face gets pins and needles, and what feels like stiffness, I have food intolerances that continue to get worse, I now almost feel like I cant eat anything, and I have nausea which I didn't have before this past two weeks. I have sciatic pain, I get the buzzing/vibration mostly in feet, sometimes leg and in vaginal area. I also get the sharp pain that feels like a needle in my eye, or similar in random spots. I have a hard time with hot water now, I can't handle it, and the cold I'm really cold,

I have tried to sit back, relax and wait. It's not always so easy. I want to work to help keep me busy, but It wipes me out. And is difficult with some of my issues especially cognitive. I want to just get the MRI done, but I know if it's good news, then I have to wonder whats up with me, and if it's bad news, that's not so great. I'm just trying to find a place of acceptance, so I can be ready to deal with whatever it maybe.

 
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Old 09-30-2012, 04:34 PM   #2
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Re: Still Waiting, new issues and venting.

I am sorry you are still waiting for answers.

When I was bedridden due to my MS seizures I started making my list of goals- daily targets. Over time I can pretty much know what my day will be like within an hour of getting up. My minimum list always has one thing to do and the list does not contain my daily necessities (shower, etc). I usually have about 10 things on my list on good days.

When you can reach a daily target, you can feel good. I never put my targets out of reach and they all make allowances for my physical abilities.

As to your cognitive issues, there are video games which have been designed through research studies to exercise your brain. You can also read. I found that as I home schooled my sons, my cognitive functions improved, though I have bad days especially when my mind is exhausted.

You could also consider hobbies and volunteer work. In 1982 I learned to crochet and there were many days when that is all I could do. I was never any good, but I made a book bag and a blanket. I still have both in my closet.

As to venting, you have certainly earned the right to vent! Many of us can well empathize with you. I have not forgotten you in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
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Eternally blessed and eternally optimistic!<><

 
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Old 10-02-2012, 10:09 AM   #3
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Becky1971 HB User
Re: Still Waiting, new issues and venting.

Hope you don't mind me saying this, but you are what keeps me coming back here. I love your perseverance!

I started doing jigsaw puzzles again after many years. It's something thats not physically demanding, but gives me something to focus on and keep my mind off other things. Only issues is I have to stop often because leaning downward puts pressure on my right side of head. And often I just get tired holding my head up. but it is mentally stimulating.

Can MS cause the issues I'm having all at once, or all within a few months or less? Just seems more and more like there is something going on in my head/brain. I have even found a spot where my pain and pressure starts from, that is soft, and it burns when touched. Seems more like some kind of fluid build up or something. Which wouldn't be MS right? When you have half the body experiencing numbness can that include the genitals too? Or would that be a separate issue. Do people with MS have stomach issues, I know they can have like constipation, but do they have food intolerance's, nausea, lack or inconsistencies in appetite?

Thank you for your prayers! I really appreciate the thoughts. I feel very alone, my husband is wonderful, but it's quite clear he doesn't get it.
Quote:
Originally Posted by MSJayhawk View Post
I am sorry you are still waiting for answers.

When I was bedridden due to my MS seizures I started making my list of goals- daily targets. Over time I can pretty much know what my day will be like within an hour of getting up. My minimum list always has one thing to do and the list does not contain my daily necessities (shower, etc). I usually have about 10 things on my list on good days.

When you can reach a daily target, you can feel good. I never put my targets out of reach and they all make allowances for my physical abilities.

As to your cognitive issues, there are video games which have been designed through research studies to exercise your brain. You can also read. I found that as I home schooled my sons, my cognitive functions improved, though I have bad days especially when my mind is exhausted.

You could also consider hobbies and volunteer work. In 1982 I learned to crochet and there were many days when that is all I could do. I was never any good, but I made a book bag and a blanket. I still have both in my closet.

As to venting, you have certainly earned the right to vent! Many of us can well empathize with you. I have not forgotten you in my prayers.

 
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Old 10-02-2012, 10:34 AM   #4
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Re: Still Waiting, new issues and venting.

Thank you. I try to pay it forward. When I was diagnosed there was very little support anywhere and the internet was not a thought. If MSers do not support one another, life gets really lonely. I certainly know that familial support is important, but sadly, it can be the most difficult to get because our family members often grieve and their grieving process can vary widely.

Jigsaw puzzles are great. In 2002 the rehabilitation nurse came to the house to look things over and help me make decisions. She saw that there were many Legos on the table and told me to use them for my hand therapy. Of course this made my youngest happy. Some of the structures we built in 2002 still remain intact today. I suppose it was rather like crocheting in 1982, but Legos was fun as it became a father-son project.

MS can contribute to one side numbness or area specific sensations. It really is tricky because the variables are plentiful. The only way I have found is to watch the symptom or problem and note its onset and length of presentation. I go over these with my neuro so that I could learn my MS versus non-MS concerns.

I know that for many MSers constipation can be a concern, but for me, it is often frequent bowel movements when my body is approaching a problem. I usually take my rest and the situation "normalizes" in 2-3 days.

As to "food intolerance's, nausea, lack or inconsistencies in appetite", yes, no and maybe are my answers! It really depends on the MSer. I cannot tolerate some foods which I once did. I simply removed these foods from my diet. Nausea- for me this can be triggered by a smell, and usually a good smell. Having worked on a dairy farm and cleaned the holding area, I have experienced a wide range of smells! This usually ruins my appetite and I have gone for up to 2 weeks of eating cereal because it was all I could handle.

I do not have any soft spots on my head where there is pain. My neuro told me that she could inject a pain blocker into areas where I was having pain, but when she tried to find an area for the needle, all my pain was blocked by bone.

Stay strong!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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Old 10-03-2012, 11:10 AM   #5
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Becky1971 HB User
Re: Still Waiting, new issues and venting.

I love that you found a way to work on your needs and spend time with your kid all at once! Perfect!

So there really is just no way of saying without ruling things out?I thought it was interesting that my doc was so quick to jump to MS, but maybe she was considering everything from my history. But I don't think she really got the full picture of what is going on in my head and the possible associated symptoms. As much as I have read about how hard it is to get docs to consider MS, maybe it's something she's very familiar with I don't know.

Any ideas as to why my armpit areas are burning. Is there a big nerve that runs through there in the same area as the lymph nodes, lymph nodes aren't connected to MS right? It's made me actually think about Lupus, but overall that's a less fit from what I can tell.

My daughter and I went to see Body World at Omsi this past Spring. It was so interesting, but the most fascinating to me was seeing the whole CNS exposed, and now with trying to understand things with my body I have learned more, and have become quite intrigued with our nervous systems. Truly fascinating stuff!

Quote:
Originally Posted by MSJayhawk View Post
Thank you. I try to pay it forward. When I was diagnosed there was very little support anywhere and the internet was not a thought. If MSers do not support one another, life gets really lonely. I certainly know that familial support is important, but sadly, it can be the most difficult to get because our family members often grieve and their grieving process can vary widely.

Jigsaw puzzles are great. In 2002 the rehabilitation nurse came to the house to look things over and help me make decisions. She saw that there were many Legos on the table and told me to use them for my hand therapy. Of course this made my youngest happy. Some of the structures we built in 2002 still remain intact today. I suppose it was rather like crocheting in 1982, but Legos was fun as it became a father-son project.

MS can contribute to one side numbness or area specific sensations. It really is tricky because the variables are plentiful. The only way I have found is to watch the symptom or problem and note its onset and length of presentation. I go over these with my neuro so that I could learn my MS versus non-MS concerns.

I know that for many MSers constipation can be a concern, but for me, it is often frequent bowel movements when my body is approaching a problem. I usually take my rest and the situation "normalizes" in 2-3 days.

As to "food intolerance's, nausea, lack or inconsistencies in appetite", yes, no and maybe are my answers! It really depends on the MSer. I cannot tolerate some foods which I once did. I simply removed these foods from my diet. Nausea- for me this can be triggered by a smell, and usually a good smell. Having worked on a dairy farm and cleaned the holding area, I have experienced a wide range of smells! This usually ruins my appetite and I have gone for up to 2 weeks of eating cereal because it was all I could handle.

I do not have any soft spots on my head where there is pain. My neuro told me that she could inject a pain blocker into areas where I was having pain, but when she tried to find an area for the needle, all my pain was blocked by bone.

Stay strong!

 
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Old 10-03-2012, 12:17 PM   #6
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Re: Still Waiting, new issues and venting.

MS has no specific tests. If it did, researchers could be working towards a cure rather than the current DMDs used. The Revised McDonald Criteria is used as a standardized method of elimination. Your doctor might have thought "MS" because it is not too uncommon, but a more accurate thought would have been "CNS problem".

As to the burning under your arms, it could be MS due to the fact that some people with MS have skin sensitivity issues. I had underarm burning. Mine was alleviated by changing the fabric. Laundry detergent can add to the problem. You could go through a cycle. I know that there are days when plastic shopping bags are painful to touch and on other days paper or certain types of paper bother me. Luckily tissue and toilet paper are still my friends!!

If you were dealing with an ongoing infection, your lymph nodes would swell because the "waste" is disposed of at these locations. The only lymph swelling I have ever had were due to an infection and not MS.

Lupus is a disease which is ruled out early in the diagnostic process. While you are going through the MS diagnostic process, at any point where a specific disease proves positive, you will more than likely be referred to a specialist who deals with that disease.

It takes the patience of Job to get through limbo land. Some self-pampering along the way might help you! While you are in limbo land, you need to avoid stress and anxiety as much as possible and you might try to discover any triggers which might cause your symptoms to present.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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Old 10-03-2012, 12:29 PM   #7
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Becky1971 HB User
Re: Still Waiting, new issues and venting.

LOL @ your friends!

I'm really not obsessing over this, I don't even want to go there, so it's just off and on thoughts, but most of the time I'm at a place of just waiting for test results and being okay with that. I know what can happen if I let my mind take off. lol I have just thought about possibilities as far as family history, and Lupus is there, but not MS.

It really does feel like limbo land doesn't it? I keep just wishing to feel normal again. But doing many of my normal things makes many symptoms/issues worse. So I'm just trying to take it easy, do what I can, focus on all the things I have to be grateful for, and just sit back and wait. The past several days I have had to go over the decision to take off from work or not, and finally decided it best. So I guess I feel a bit emotional about that.

I can tell you, that most of my anxiety is regarding finding nothing wrong, than it is finding something wrong. But with that too, I have to get myself in check and just wait.

Thanks for the conversation!
Quote:
Originally Posted by MSJayhawk View Post
MS has no specific tests. If it did, researchers could be working towards a cure rather than the current DMDs used. The Revised McDonald Criteria is used as a standardized method of elimination. Your doctor might have thought "MS" because it is not too uncommon, but a more accurate thought would have been "CNS problem".

As to the burning under your arms, it could be MS due to the fact that some people with MS have skin sensitivity issues. I had underarm burning. Mine was alleviated by changing the fabric. Laundry detergent can add to the problem. You could go through a cycle. I know that there are days when plastic shopping bags are painful to touch and on other days paper or certain types of paper bother me. Luckily tissue and toilet paper are still my friends!!

If you were dealing with an ongoing infection, your lymph nodes would swell because the "waste" is disposed of at these locations. The only lymph swelling I have ever had were due to an infection and not MS.

Lupus is a disease which is ruled out early in the diagnostic process. While you are going through the MS diagnostic process, at any point where a specific disease proves positive, you will more than likely be referred to a specialist who deals with that disease.

It takes the patience of Job to get through limbo land. Some self-pampering along the way might help you! While you are in limbo land, you need to avoid stress and anxiety as much as possible and you might try to discover any triggers which might cause your symptoms to present.

 
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Old 10-03-2012, 12:43 PM   #8
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Re: Still Waiting, new issues and venting.

Sadly, you may never feel "normal" again. BUT you can mitigate this feeling by establishing a "new normal". A new benchmark makes grieving over the loss of your old normal a thing in your past.

There is a feeling of relief when you finally get an answer. When you know what you are facing, it is easier to formulate a plan of action.

As to your normal activities causing your symptoms to worsen, you might look at a list of your normal activities and try to deduce the triggering activity and eliminating or adjusting it. If you have to prioritize your activities, make the list, but make sure it is flexible. On a good day you might be able to complete your entire list, but on a bad day you might just focus on 5 activities or 10 activities or ? Having a checklist which you can use on a given day allows you to achieve a bar or goal without setting it too high. If I know I can make it through 5 activities, but 8 is too much, I will stop at 5 and be satisfied. Throw guilt or inadequacies under the bus and breathe easy. Today has its own troubles without worrying about tomorrow's trouble!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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