Pain and fatigue

[MommyofNatTyZach]

Long story short... I had have a couple of abnormal mri's. Changed neurologist. I love my new one! I am having a spinal tap Wed. I was diagnosed with diabetes and then what they thought was bronchitis ended up being the whooping cough... I have lost ten pounds so far! My neuro thinks my symptoms and MRI points to MS.

I have read that with MS it is not uncommon to go without symptoms and then have flare ups. I have done pretty well for two months. The biggest problems is the fatigue and my body hurts... Does this ever go away. I started teaching in August and here lately, it is everything I can do to get through the day. After lunch, I think I could lay my head at my desk and go to sleep.

I also pee about once and hour and three or so during the night. I drink a lot of water now and no pop...

Thanks for reading!

[supermum_ms]

Hmmmmmmm the dr who had originally dx me with hypoglycaemia, had also dx my mother with hypoglycaemia before tests showed she was anaemic, misdx her with a few other things and she dx my daughter with it too and stuck to that dx visit after visit lol she got tests ordered by another dr in the clinic and it turned out to be a rare viral infection. Another time dr was trying the hypoglycaemia card and it wasn't until she told them she was leaving the clinic, tests came back with her being borderline anaemic and vit B deficient.

I just think that dr dx hypoglycaemia if you happened to be female, oddly strange that none of us actually had the same sx complaints but she still dx us all with hypoglycaemia and stuck to it, even before any tests showed what it really was, I think that counts as bad doctoring lol. Officially i've not been dx with MS by a 'neurologist' just other specialists keep saying MS lol, long story cut short 20yr history, clinical sx's and sx pattern consistent with RRMS, lesions yada yada yada but bad neuro experience more than put me off, so no rubber stamp until I find where I put my big girl panties.

lol I'm an athlete with muscle fatigue, i knew exactly what my body 'could' do and just how far I could push but somewhere along the line the rules changed and nothing i know applies. I like Alex said have to budget my energy and my window of normal is getting shorter and shorter. Sometimes it doesn't matter what you do if the lassitude fatigue hits, now thats fighting a loosing battle. I can't hold my own body weight against gravity, the house could be burning and i'd not be able to do anything lol i can sleep waiting for prince charming and the seven dwarfs but just as suddenly as it came on, it goes away and i miss out on that darn kiss lol

We have a health page on fatigue that goes into some detail and a lot of the MS societies have something on MS fatigue because its a very common sx of MS. This is one of the diabetes sites i've visited on and off working with kids with diabetes its got a lot of helpful information that you might find of some use, though it is Australian.

http://www.diabetesaustralia.com.au/Understanding-Diabetes/What-is-Diabetes/Hypoglycaemia/

Cheers..........JJ

[MommyofNatTyZach]

Thank you! That is exactly how I feel!!! Before February, I was a different person physically. I could stay up late, study half the night, get up and do everything I needed to with my children. Help my husband, but now I can't. This sounds crazy, but my ankles hurt. It hurts to move sometimes and stand. My memory is not what it use to be, yet I can't explain it..

I haven't shared that part with anyone yet, about the pain/ weakness in my ankles. I have decided I have to start saying no. I play piano at church, teach, my husband and I are remodeling our house.... and the list goes on. I just can't do it anymore. Someone text me to ask me to bring a turkey for church prepared.. and I cried. lol

I am SOOO sorry about your cancer and MS. I can not imagine having cancer as well as MS. I do not know how you do it! I will pray for healing for you. Thank you for the advice. I need to manage my time better. If nothing else, maybe I can look into something for fatigue! Thank you for your kindness.

~B

[HVAC]

Hello. Speaking to MS fatigue. MS fatigue is like running out of gas. You are going along and then all the sudden you have no energy. I will be cooking and drop the pan.

Those of us with MS have to think of energy as money in the bank. You have to budget it because when it is gone it is gone. Light exercise can be good but you really have to learn your signals and know what you can do in a day.

Many people with MS have other conditions which complicates matters. Having a good Primary Care Doctor is so important.

I have both MS and stage 4 Cancer. I can't do things the same way as I used to. I get very tired. I really have to manage my energy. I use to be able to push too hard and I would be really tired but be able to bounce back the next day. Now I can't do that.

The trick is to understand whatever illness you have and know what is normal for you. This is easier than it sounds. No two cases of MS are the same. Each case is different because in each person there is different nerve damage or inflammation.

There are drugs for fatigue. Provigil, Nuvigil, and Adderall for examples.

Alex

[MommyofNatTyZach]

Thanks for your help. When you don't feel good for a long time, a lot of people do not understand. I had the spinal Wed. feeling rough today. I think I overdid it working yesterday and today, but I did take a long nap.

I so wish I could make myself better :) lol I am praying for a healing. I know God will bring me through no matter what it is. I am at the point I just want to know. I go back next wk for results of spinal and the blood work, so prayerfully I will be closer to a diagnoses.

Was it MS for you and not hypoglycemic? You are correct, about the pre diabetic I think. Because he said gaining weight over the summer probably did it. Now if it only came off as fast as I put it on! :)

[supermum_ms]

lol no worries, it happen's :D and we do pretty well with the understanding and support etc and we all definitely understand, that there are times when we really do need to feel connected to other's dealing with the same/similar things....

It would make sense to assume you were already pre-diabetic and the weight gain over the summer, was enough to throw you over the edge and into diabetes. Honestly, a lot of what I know about diabetes is from working with a handful of kids with type 1, friends with type 2 and my personal understanding of fatigue caused by hypoglycaemia.

I was originally mis-dx with hypoglycaemia, 'only' because i'm a small women and the dr at the time blamed my weight for everything, even when there was zero diagnostic evidence or even anecdotal to support it. For over 2 years I was focused on my weight, eating small healthy balanced meals 5 times a day, then I had to add between snacks, blood sugars always checked multiple times a day and were 'always' within normal ranges.

Yet I would still experience 'blocks of time' where my sx's would return, or get  worse or some new muscular issue turned up and the fatigue just got even harder and harder each time it came back, and that was regardless of the 'special' diet to fight hypoglycaemic fatigue, hmmmmm that i actually didn't have.

I still have a habit of thinking I need food when the fatigue starts escalating again, lol the point i'm trying to make (sorry if i've lost you) is that 'if' your fatigue is due to hypoglycaemia, what you eat, how much you eat and how often you eat etc should make a significant difference to your battle with fatigue and if you are trying to loose weight it can be really hard to get the balance right.

Though if its complicated by MS, its going to make the battle all that much harder but still i'm afraid its one thing you'll have little choice in, if it turns out to be correct, so you are absolutely doing the right thing by getting this aspect under your control, well done YOU!    

Hugs..............JJ

[MommyofNatTyZach]

I went back and found the results of my first mri...

There are numerous tiny hyperintensities scattered throughout the cerebral white matter bilaterally.

Impression: Abnormal white matter disease as described above. The differential is extensive and includes demyelinating disease as well as autoimmune and post inflammatory disorders.

[MommyofNatTyZach]

I posted several months ago the results of my MRI, it didn't cross my mind that it wouldn't be remembered! lol I don't know what I was thinking.

My MRI showed white matter disease and other things I can't remember, I have the results somewhere... there are some lesions the doctor was not worried about, but there is a large one and one that runs along the lining of my corpus collusm (sp)... that was the one he was the most concerned about.

Over the past 7 months or so I have had headaches, face pain, blurry vision, muscle twitches, my arm and leg goes completely numb... I also could not concentrate. It was horrible in the spring. I had to drop classes, because I just couldn't do it and I was an A student.

I am sure there is more, but I can't remember right now. These symptoms have not happened all at once. Fatigue is my worst enemy right now. Sometimes it hurts just to walk. You are right, a lot of these are found in diabetes. I have researched everything under the sun, in hopes of finding answers to getting better. I have three young children and they need a healthy mom, which is my worst fear of not being here for them...

My previous blood work did not show diabetes, this wasn't until August.
I think the diabetes sprang from me gaining weight over the summer. Type two is my fault. I should not be overweight, but now am on the road to become healthy. Prayerfully if this is what is causing my problems, I will loose weight and feel better.

Sorry for all the confusion! I am not looking for a dx (from here), necessarily, just support. Sometimes I feel like I am going crazy! :)

[MommyofNatTyZach]

That is not the case, that I know of. When I became sick in February I had blood work then, and it came back fine. Then again in May or so and it was fine. Then in August and my sugar was high. I think he said my fasting was 147 at that time, so that wasn't horrible, but he said it is still considered diabetic. I didn't think it was that bad, my mother in laws have been in the 300's.. I had gained 30 pounds over the summer, due to the lack of energy, etc.

I started with all the symptoms months before. I have 5 to 7 lesions. The one he is most concerned about is along the top of my corpus collosum. Not just a small part but the whole lining of the upper half, as well the other lesions. My results said something like white matter disease. I just had them with me yesterday for my spinal, so I should find them soon.

Maybe it is the diabetes causing all my problems memory, fatigue, twitches, pins and needles, and so on. I have felt worse in the past eight months of my life.... I have never had numbness in my limbs, face pain, muscle twitches, or memory problems before...

My sugar is under control now, so if it is that I hope I feel better soon. It has been a long road for several months. I have even given up diet pop! In hopes of that helping.

[Poppy7402]

When you started on the diabetes path, were your blood sugars really high before it was picked up you're diabetic, and them then brought under control rapidly??

There is a known, but very rare, complication with bringing blood sugars under control too rapidly, and it's the symptoms you have mentioned.

Just throwing another thought into the pot.

Best wishes

Poppy

[supermum_ms]

I think some of the confusion may stem from you only asking "Does this ever go away" and you have been dx with diabetes. Your mentioned symptoms (pain, fatigue, excessive urination) are sx's of diabetes and at this stage your sx's could be from what you already know and or be further complicated if the work up for MS does turn into an additional dx.

Considering you do have a dx of diabetes, it is highly possible that it is inter related to what you've mentioned, your blood sugar levels 'could be' in effect, making you fight a incredibly harder daily battle of fatigue! Regardless of if you do additionally get dx with MS or not, your dx of diabetes is significant and will be causing a negative impact to the levels of fatigue you have to deal with and that does change what you can do about it.  

I'm sorry to say this but you didn't provided any information about your test evidence or of any abnormal neurological findings, so i'm finding it really difficult to offer much insight to meaning, though i'd like to help you if I can. Its possible that your abnormal EEG and brain lesions (type?) 'could be' associated with your diabetes or even possibly it's more suggestive of MS but with out further information it would be very hard for anyone to help, sorry!

I did try doing some generic searches, "abnormal EEG and type 2 diabetes" and "brain lesions and type 2 diabetes" and there was a lot of informational hits, that you may like to have a read through.

Cheers.........JJ  

[MommyofNatTyZach]

Thanks. See my comment to JJ, it explains that I am keeping track daily. I guess I did not say this. When I said I do not know the result of the anti GAD that poppy asked about. I was told, but do not remember. Thank you for praying.

[MommyofNatTyZach]

I take my blood sugar levels daily. I just do not remember what the results were on the blood test. I was told, but can not remember. I am under the care of my physician in loosing weight. When I say loose weight, I assumed it would be known of course that I do not eat sugar, high carbs etc. I only drink water. No pop including diet. The Diabetes is Type 2. Actually, my doctor and nutritionist friend, believe Type 2 is changing the way you eat and loosing weight.

However, I was not on here to ask question about the diabetes. I feel comfortable with being weighed and monitored by my doctor weekly and testing my blood daily. I was more concerned with the symptoms, brain lesions, abnormal EEG results. Thanks anyway.

[PastorDan]

I'll second both points JJ makes just above, and I am one who knows a lot about diabetes and sleep apnea.

We'll pray you get credible answers that lead to effective treatment.

[supermum_ms]

I think you really need to know more about the diabetes!

Usually if your choice is "loose weight or do insulin" it would be weight related and that's classed as pre-diabetic or type 2 but it's not usually just a matter of loosing weight. I really really think it's very important to understand, exactly what your blood sugar levels are running at through out the day, it's highly possible they are too low and that's called hypoglycaemia and that could easily explain why you are so fatigued!

http://www.diabetesaustralia.com.au/Understanding-Diabetes/What-is-Diabetes/Hypoglycaemia/

If "Naps do not help that much anyway, they make me more tired!" it is quite possible that you may also be dealing with sleep apnoea see http://www.snoreaustralia.com.au/obstructive-sleep-apnoea.php to get a better idea of what sleep apnoea is all about and if it could be something you need to get assessed for.

I think it would be most helpful to you to speak to your dr about this, I don't think it's a good idea to loose weight with out guidance specifically tailored to your specific circumstances, especially if diabetes and or sleep apnoea are part of your medical issues.

Cheers...............JJ


  

[MommyofNatTyZach]

Hi! I am not for sure. They have done blood work several times. I do not know what my numbers are. He just said I have to loose weight or do insulin. I opted to loose weight. Do you know what the condition is called?

[MommyofNatTyZach]

My fatigue has been since February. I started doing better with the other symptoms, but the tiredness has never completely left. The pain also started in Feb through July and wasn't as bad until recently... I do think working is tiring, but these symptoms are some of the same ones I had when I wasn't working.
lol I wish I could squeeze in a nap, however with a room full of student's, I do not think that will work! :) Naps do not help that much anyway, they make me more tired!

Thanks for responding.

[Poppy7402]

I just read that you were diagnosed with diabetes.  Did they do this with the anti GAD antibody test?  If they did, do you know what your level was?  A really high level is an indicator for a neurological condition that's not MS.

Poppy

[supermum_ms]

oops sorry another thing i was going to mention is that whooping cough has various stages and it can take up to 3 months or even longer to recover, so that will probably not be helping with your fatigue either.

[supermum_ms]

Hi there,

If you haven't noticed the time frame of your struggle with fatigue and pain, it's right around the time you started teaching, so it could be that you've been overloading your self and you may need to find some ways to reduce, how much your trying to get done each day, and if you can squeeze in an afternoon nap........go for it!

Cheers.........JJ