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First Fibromyalgia now possible MS diagnosis...I'm lost, ADVICE PLEASE!!!!

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Posted 3/21/2008 3:09 PM (GMT 0)
 

Hello all, i am new here. I've been struggling with something nearly my entire life. 6 months ago I had a week long episode of numbness and weakness , pain, tingling in my left arm and leg. I went to a neuro who thought that with some other symptoms it was possible MS, I had a brain, cervical, thoraci and lumbar MRI, before going to him for the report I found he was charging my insurance company for things that were not done so i picked up my records and got a new DR....the nect doctor (a DO) did labwork and said I had hypothyroid and a few bulging discs/arthritis/degeneration of the spine (per MRI report from a radiologist that he sent the MRi's out to be read by) he refused to allow me to use Armour instead of synthroid so I switched DRs again. ...I love my current Dr. She is great, she did more labwork and said I have Hashimoto's thyroiditis, also non diabetic hypoglycemia and anemia. At the same time I have rashes that came up when i got pregnanct with my 3rd child 2.5 years ago and have never gone away. My current doc sent me to a dermatologist to get biopsies...they came back as Guttate Psoriasis. He asked for the mri's as well, and said he believes it is psoriatic arthritis in the spine. he wants me to take enbrel injections twice weekly....my doc referred me to a new neurologist who i saw in january, after a thorough exam and bloodwork to test for lymes, b-12 levels, ANA, sed rate, etc, he said he believed I had fibromyalgia and complicated migraines that were causing the left side weakness and other symptoms. He prescribed lyrica to try for a month. it did nothing for me. 2 weeks ago i developed problems in speech and stuttering, slurring, reading things 4-5 times but still not getting it,etc. I scored a C in an exam in college when I had previously made all A's. I also thought i got a bladder infection around the same time because I kept feeling the need to go but was also having a little incontinence problems as well I have chronic constipation. I went back to the neuro Wednesday and explained this all to him. He said this would indicate a separate episode and ordered another BRAIN ONLY Mri , I am going on monday AM. He also wants to do a spinal tap. He said it is indicative of possible/probable MS but we must go through the process of elimination.

I feel lost with this information because when I was given the fibromyalgia diagnosis I was relieved, I thought, "okay now i know what this is and i can kick it in the butt and get rid of it." my husband and i got a sauna and a hot tub and I started to read everything I could find on the subject, preparing to change my diet and my life to cure myself. Well the first night in the hot tub I had a reaction and the next morning I felt much worse rather than better. The second night i had the same reaction the day after. This is very depressing and discouraging after the money we spent and the hope I put into that hot tub.  I feel like I am in limbo now and i can't really grieve and move on.  I do have constant pain that i'm told can be symptomatic of Fibromyalgia but I also had the coming and going of the other worse symptoms. To a degree my husband is in denial about anything at all and that makes it harder for me. I am 26, with  2, 4 and 6 year olds, i am a full time college student and LMT. I am worried about this because my father had cancer and myasthenia gravis when he died in his early 40's. I was failure to thrive as an infant and have been "sick" with one thing or another for my life. I just want to know what I "have" so I can get rid of it.

Please i am looking for advice, has anyone had to go through a "possible/probable diagnosis" before, and also I was not told that my first MRI showed any lesions so I am confused as to why a second is needed only 6 months later and how it can be considered possible/probable ms if there were no lesions?

Thank you for reading my long story and for any advice/input.

 

Posted 3/21/2008 3:46 PM (GMT 0)

onthejourney said...
 

... I went to a neuro who thought that with some other symptoms it was possible MS, I had a brain, cervical, thoraci and lumbar MRI, before going to him for the report I found he was charging my insurance company for things that were not done so i picked up my records and got a new DR

....the nect doctor (a DO) did labwork and said I had hypothyroid and a few bulging discs/arthritis/degeneration of the spine (per MRI report from a radiologist that he sent the MRi's out to be read by) he refused to allow me to use Armour instead of synthroid so I switched DRs again.

 ...I love my current Dr. She is great, she did more labwork and said I have Hashimoto's thyroiditis, also non diabetic hypoglycemia and anemia. At the same time I have rashes that came up when i got pregnanct with my 3rd child 2.5 years ago and have never gone away. My current doc sent me to a dermatologist to get biopsies...they came back as Guttate Psoriasis. He asked for the mri's as well, and said he believes it is psoriatic arthritis in the spine. he wants me to take enbrel injections twice weekly

....my doc referred me to a new neurologist who i saw in january, after a thorough exam and bloodwork to test for lymes, b-12 levels, ANA, sed rate, etc, he said he believed I had fibromyalgia and complicated migraines that were causing the left side weakness and other symptoms. He prescribed lyrica to try for a month. it did nothing for me.

...2 weeks ago i developed problems in speech and stuttering, slurring, reading things 4-5 times but still not getting it,etc. I scored a C in an exam in college when I had previously made all A's. I also thought i got a bladder infection around the same time because I kept feeling the need to go but was also having a little incontinence problems as well I have chronic constipation. I went back to the neuro Wednesday and explained this all to him. He said this would indicate a separate episode and ordered another BRAIN ONLY Mri , I am going on monday AM. He also wants to do a spinal tap. He said it is indicative of possible/probable MS but we must go through the process of elimination.

... Well the first night in the hot tub I had a reaction and the next morning I felt much worse rather than better. The second night i had the same reaction the day after. This is very depressing and discouraging after the money we spent and the hope I put into that hot tub.  

Please i am looking for advice, has anyone had to go through a "possible/probable diagnosis" before, and also I was not told that my first MRI showed any lesions so I am confused as to why a second is needed only 6 months later and how it can be considered possible/probable ms if there were no lesions?

Thank you for reading my long story and for any advice/input.

I broke up your post a bit, deleting sections that I don't have any good opinion about, leaving others that either I wanted to comment on, or ask questions:

First though, you said "I just want to know what I have so I can get rid of it." I hope you do understand that if you do have fibro...or MS...or diabetes..or a host of other disorders, you may well have a disease or disorder that you can't  "get rid of", and instead need to learn to treat for the rest of your life?  Not all diseases are curable; most neurological diseases fall into that category.

Now on to your comments: How did you find out that the doctor was charging the insurance company for "things that were not done"?  Many times one test can give results for a variety of things.  Did you ask another doctor, or do you have medical background sufficient to figure this out?

Why did you insist on the Armour, instead of synthroid?  Is one a "brand" and the other "generic"?  Do you understand that generics are required, by FDA rules, to be *the same* (as far as their active ingredient(s) are concerned) as a brand, but quite a bit cheaper?  That's probably why he prescribed it. And some insurance companies won't pay for "brands" if generics are available.

The neuro who suggested fibro -- and prescribed Lyrica -- did the right thing.  When it "didn't work", he's pursing other possibilities. Lyrica of course won't "work" to treat MS. So he's following up with another MRI and a spinal tap. Why? Because MRI's can change over time...even over weeks, not to mention months or years.  And a spinal tap is a good diagnostic tool, to rule in..or rule out..other disease mechanisms that could be affecting you. Chronic infections in the central nervous system will show up through a spinal tap, for example (and could explain that rash problem, too.)

It is possible to have MS without lesions showing up on MRI's, particularly in the early stages. MRI's aren't "definitive". There IS no definitive test for MS..which is why your neuro said he has to eliminate all the other causes.  And again..an MRI done 6 months ago may not have shown lesions, where they might appear on a new one.  Given the fact that your symptoms seem "all over" your body, and not just in your legs, bowels, bladder -- stuff from the neck down -- it's reasonable that he's getting a new brain MRI first, to see if there are lesions in your brain.

What "reaction" did you have to the hot tub? A typical MS-"reaction" would be extreme weakness in your legs or arms, or an increase in other MS related symptoms, which would decline once your core body temperature cooled off.

Unfortunately it seems common that people with one autoimmune disorder (the Hashimoto's is an autoimmune disorder) can have others. And of course just because someone has MS doesn't make her/him immune to other unrelated problems, including disc problems, or other diseases.  It sounds like your PCP is  being thorough to figure out anything else that might be going on, and then getting you good specialist referrals.

 

I hope you get all this sorted out soon.  Good luck with the new MRI's. Several folks here have undergone spinal taps; we'd be glad to share our experiences with you, if you want.

Posted 3/22/2008 12:27 AM (GMT 0)
Hi thanks for your reply, as for the getting rid of the disease thing..this is something i am admitedly struggling with. I am somehwere inbetween believing I can manifest healing/positive thinking and the reality of needing treatment, I went through this when I was diagnosed with Hashi's as well. I'm a licensed massage therapist, in school for physical therapy now. I've always been a "natural/alternative medicine type" so I cried (literally) when I discovered I'd have to take a pill for the rest of my life for the hashi's. As for insisting on Armour, it is a natural form of thyroid, i insisted after consulting with the head of the fibromyalgia Research foundation and finding from several people i know that armour has all 4 thyroid hormones instead of just t-4 or t4 and t3. So a lot of people react better because it is closer to what our body is used to. I also insisted because I thought it would help me cope better...even though it may be a non issue for most people, for me this was my identity I always ranted and raved about pharmaceuticals and western medicine and the "take a pill for this" practice. Now I was having to eat my words, it was hard to swallow and the Armour allowed me to "retain a portion of my identity" if even it was only in my feeble mind. i changed doctors because I felt that i did not make an unreasonable request, it was also recommended by another doctor as well. i felt my dr's unwillingness to listen to me and my concerns, be they non issues to other patients or not, showed me that my treatment would likely be hindered many times along the road with him and his lack of compassion. My current doctor PREFERRS to prescribe Armour....I should also mention that I DID TAKE the synthroid for 2 weeks before I began researching other options because I was having nausea every night...that is when I learned of armour and asked my Dr. I was so excited.... as for the 1 st neurologist and how did I know what he was doing...#1, I got a statement of services from my insurance company and the bill was for like 3,000.00 total...it seemed exorbitant to me since I had ONLY gone into the office, talked to the dr for less than 10 minutes and then he gave me prescriptions for MRI;s topamax, klonopin, laxatives, BAER and some other things. I called my insurance company curious as to what he could have charged so much for a consulatation (even though I had to pay only 35$ copay) and they said he had billed that it took him 2 hours for a "complete neuro-something or other exam" and some kind of evoked potential testing. They asked me what my visit entailed... I told them and they said they would need to investigate because he had billed for much more. they rec.
I go else where for care. I also went to the pharmacist to ask about the prescriptions because the DR never told me about them and the office girl said "the pharmacy will explain to you" and the pharmacist said he would not even approve the script without speaking to the DR because the dosage was extremely high expecially on the topamax, i can't exactly recall but I want to say that the pharmacist said the doasge should be built up and the Dr was trying to start me out on the MAX reccomended dosage. He asked me why I was prescribed it...did I have migraines? No..epilepsy? no. the same withklopnopin , the doasge was very high. Now having been to a neurologist who has been very thorough and explained a lot to me I can say for sure that the first Neuro DID NOT even do anything close to an exam by just talking to me.

As for the hot tub, I can't really describe the feeling in my hand it was an odd sensation , sort of mix of numbness and weakness.

anyways i thank you kindly for your help and reply
blessings
Posted 3/22/2008 1:50 PM (GMT 0)

onthejourney said...
 I am somehwere inbetween believing I can manifest healing/positive thinking and the reality of needing treatment, I went through this when I was diagnosed with Hashi's as well.

 As for insisting on Armour, it is a natural form of thyroid, i insisted after consulting with the head of the fibromyalgia Research foundation and finding from several people i know that armour has all 4 thyroid hormones instead of just t-4 or t4 and t3.

 i changed doctors because I felt that i did not make an unreasonable request, it was also recommended by another doctor as well. i felt my dr's unwillingness to listen to me and my concerns, be they non issues to other patients or not, showed me that my treatment would likely be hindered many times along the road with him and his lack of compassion.

I go else where for care.
As for the hot tub, I can't really describe the feeling in my hand it was an odd sensation , sort of mix of numbness and weakness.

anyways i thank you kindly for your help and reply
blessings

I'm glad you're proactive about your health care.  I think finding a doctor in whom you have confidence is a key, because if indeed it turns out that you have MS (or some other chronic illness), you're going to need to be working with the doctor for a long time.

A disclosure: I am not at all a believer or supporter of alternative medicines.  While I do believe "positive thinking" and an optimistic attitude are crucial to my good life, I am firmly in the camp of using only FDA-approved scientifically tested medications. I use as few as possible..but if they're not fully "vetted", they don't go into my body.

So with that in mind, here is my concern about Armour -- are you sure you need those added hormones?  There is some evidence that there is a link between some autoimmune diseases and  too much of various hormones. Not knowing anything about Armour I couldn't begin to speculate, but you might want to investigate that, just to be sure you're not doing yourself more harm by taking it.

I see someone has already suggested that you be thoroughly tested for Lyme.  She was careful to suggest that as one possibility that indeed needs to be ruled out, and that the usual Lyme tests done by doctors are not always accurate. But don't fall into the trap of cruising the Internet and finding lots of "lyme sites" where folks claim that everyone with MS (or similar diseases) in fact have Lyme, that they've all been misdiagnosed, their neuros are "uninformed", and what they really have is Lyme, and so on.  There are indeed some instances where some people have been misdiagnosed..but many of us really do have MS, and Lyme has been ruled out as a possible source of our problems.  If you suspect, though, that you might have been in contact with the lyme disease bearing tick, that might be another avenue to pursue.

I hope all this gets sorted out for you soon.

Posted 3/22/2008 3:02 PM (GMT 0)
Dear onthejourney,

Welcome to HW.  I am glad you found us here.  We have many that have been diagnosed here and many, like you are looking for answers.  I see that our wise and experienced Uppitycats has responded to you.  I don't have much to add, she is always very thorough.  I can tell you my experience being diagnosed and my feelings about having MS.  I was realitively healthy my whole life with no issues besides some mild allergies and asthma.  It hit hard and I received my diagnosis fairly quickly.  I also take only FDA approved drugs.  I do take some supplements, also approved and recommended by my neurologist. 

I hope you get some answers soon and get some relief. 

I also want to encourage you to investigate all avenues including lyme disease.  Lyme can be a very sore subject on this board due to some coming here and basically telling us that MS is just a form of advanced lyme.  Many here ended up hoping that the MS diagnosis was wrong and that it might be something curable like lyme.  It has caused some bad feelings here.  I do hope this thread does not become another long arguement. 

Good uck in your search for answers and please let us know how you are doing.  You are welcome go post any questions and concerns you may have.

 

Posted 3/24/2008 3:13 AM (GMT 0)
Onthejourney, I can totally relate to your frustrations as it's taken me the last 10-12 yrs to finally get docs to take seriously a combination of my symptoms and realize something is amiss. After originally diagnosing me MS by exam, then not finding brain lesions, then rechecking everything else and rechecking me on 6mo and 1yr followups with even more progressive symptoms, now he's sure it's MS, but I'm still waiting MRI's and VEP results... the key is patience. Honestly, it sucks but be persistent and patient.

Medicine is a science but not really. The individuality of every body makes it horribly difficult to lump all of us into one category over another. Drs can only work by process of elimination and the majority os symptoms pushing in one or another direction.

I too am hypothyroid and I too insist upon Armour Thyroid. My endocrinologist discovered that my body doesn't process synthetics very well (on any level most of the time) so he switched me from Synthroid (brand name) to Armour (brand name for regulated pig dessicated Thyroid hormone) and my GP requests it specifically because Generics, despite legal expectation, vary way too much to be sure I'm getting the full 2000mg daily I have to have. So good for you to stick to your guns on that but you might have worked with the doc on it a bit rather than jump ship... most docs I've found like learning the new stuff about things they don't normally deal with.

1999 and 2000 were particularly hard years for me as far physical ailments and I spent a lot of time in the drs office getting bloodwork and tests done... only to get one inconclusive after another until one day when I tripped up on Fibromyalgia and asked him about it, he immediately grabbed the dx for me and told me that's my problem and it's a live with it syndrome. End of the matter. Happy to have a name for all the crud I felt, some stuff just didn't fit but I still figured he knew what he was talking about but he burned his bridge with me when he refused to further test me for higher Thyroid meds... the new GP has increased me to the current 2G and I run great all day now, except for the sudden fatigue episodes that set in these last 6 months or so every afternoon... but that's now more MS than Fibro. Or maybe it's both. My neuro's not too keen on Fibro so he's pretty much answered each symptom so far with the MS.

Anyhow long post short, the idea is hang on, stay firm on what you know about your body, do whatever it is that helps you keep your sanity throughout it, believe you know your body best and stick to your guns. A dear friend of mine ran the gamut over her doctors in Alaska about not being or feeling well, for almost 2 yrs... she actually figured out she had Cushings Disease... the docs didn't believe her, until she connected with a Dr here in florida... they found 2 major tumors on the pituitary (functioning tumors) and she had surgery and she's been recovering beautifully ever since... but it took her believing and hanging on to get there. So hang in there, don't buy everyone else's impatience. Be good to you, keep track of the symptoms so you can present them to the dr on visits, and hang in there. That's all I can figure to do myself... the alternative option isn't one.
Posted 3/25/2008 8:37 PM (GMT 0)
Hi again and thank you to all who have replied! Ia had the MRI yesterday and I am waiting for the results. In the meantime, I am going to look into the LYme thing because when I was 12 i was biten by a tick in CT and went to the DR because it developed a ring around the bite that was red,etc, I was tested for LYme but it was NEg. I recall getting the shot in my rear end very vividly though( i assume some type of antibiotic or the like). I believe I should thoroughly investigate this because I also did road marches in Germany until I was 12 and we used to get biten by ticks A lot. I'm sure I've had a fair share of exposure to ticks...as well I did a brief period in the ARMY and spent some time out in the field.. I'm not sure exactly how you get Lyme's but it is worth looking into as I've burned my fair share off of me :)

as for changing Dr's instead of working with the one who refused Armour...well I tried, but he had the "who has the medical degree" issue and refused to hear my concerns. Actually...when I found out about the hypo thyroid...he was walking out of the exam room and i said, WAIT, what about my other labwork I had done? and he flipped through real quick and said "oh yeah BINGO here it is, you're hypothyroid, I'll give you a script and you should lose weight and be back to yourself in no time" then he literally scratched out a script and walked out. No explanation or anything. After much reading (and now experience) I've found his comments were wishful thinking and rather insulting.

To be honest I do not know what the label or name is or if there is one for the symptoms I have, I have kept journals on them and tried to manage them, having a PPO helps because I can up and decide to go to a podiatrist, neuologist, etc without a referral, then I always do a followup at my PCP to confer with her and see what she thinks on the results of anything new I find. She doesn't mind this either.

I am just trying to stay positive and open minded/flexible about this all, I do believe WEstern medicine does a lot of good in the world, that's why I am in school for physical therapy and eventually the DR of physical therapy.... and who knows , maybe this is just a bump in the road to get me to examine my beliefs or to strengthen them. I do know though, and I firmly believe, that I can recover from this. I do not think it will be quick, easy or without failures, but I do believe that with a certain amount of detachment determination, I can make progress and live a healthy happy long life. I thank all of your contribution to my journey...this is a great little niche in the net...so glad I found it!

Posted 3/25/2008 9:12 PM (GMT 0)
Given your history of living in an area where Lyme is prevalent, and being outside and "camping out"...certainly pursue the Lyme testing. There is a Lyme forum here where they'll be happy to tell you all about "Lyme literate doctors", and what specific tests you need to have run to determine whether that is the cause of your problems.

Thyroid problems, by the way, can cause a lot of symptoms similar to neurological problems, so be sure you get that under control, too!
Posted 3/25/2008 11:30 PM (GMT 0)

I am just trying to stay positive and open minded/flexible about this all, I do believe WEstern medicine does a lot of good in the world, that's why I am in school for physical therapy and eventually the DR of physical therapy.... and who knows , maybe this is just a bump in the road to get me to examine my beliefs or to strengthen them. I do know though, and I firmly believe, that I can recover from this. I do not think it will be quick, easy or without failures, but I do believe that with a certain amount of detachment determination, I can make progress and live a healthy happy long life. I thank all of your contribution to my journey...this is a great little niche in the net...so glad I found it!

 

Onthejourney, I commend you for the "positive" attitude and by no means do I think it's good NOT to have one but there comes a point when you accept something as incurable. One of the really simple ones for me was hypothyroidism. After never having to have to take a daily pill a day in my life, I suddenly had a lousy thyroid. And when I asked the doc how long, he simply said, forever. That was a shock to me as simple and maybe silly as it sounds but pill regimen's weren't part of my world or reality at that time back in '99 but the drained energy & sudden weight gain etc suddenly was and this was the answer (except the weight gain never went away til the topamax got the pituitary under control) ... but what I'm saying is: curable may not be in the big picture in the end no matter what it is.

Personally I hope and pray for you it really is Lyme... having been a Scoutmaster for 15 yrs, my Neuro ran me thru that gamut too... no such luck. Negative all the way and I can count my ticks & skeeters memories a plenty here in tropical florida! But at some point there'll be the acceptance of what it is... which is what brought me here... after running for 18months trying to disprove MS my neuro ended right back up on the same square he started on: MS. So now it's acceptance and ready to begin a treatment regimen that will make the rest of my life bearably long and useful as I so dreamed to be. For me, it's an answer... not the one I'd hoped for but the one I suspected all along... and one I can deal with. I like knowing my enemy rather than wondering why why why all the time.

Just some thoughts... recovery only comes if it's available, otherwise it's a matter of dealing with it. I always liken it to facing off with a bull, I'd rather see him and hold him at bay by the horns rather than ignore him and get gored becos I won't see him coming... so many of my friends wondered why I pursued my symptoms when for the most part I function "pretty good" (they can't see half of what goes on!) ... I told them becos if I can do something now that makes me better later down the road, I don't want to be later down the road wishing I'd done it NOW.

Thanks for letting me ramble a bit... :)

Posted 3/26/2008 2:38 AM (GMT 0)
Thank you for your words...and I guess I should explain myself a bit as I am new here....I agree with what you are saying, but by recovering, I mean with realistic expectations that I can get back to a point where I don't have to drag myself through life each day and put on the make believe "everything's fine" look. I have fully accepted that I will have to take medication for life...the thyroid. like i said, I cried for a few days when I found out, but then I accepted it and embraced the new hope of feeling better. I was also hopeful that my hair would stop coming out in clumps(no luck yet)I'm on 2.5 grains and i take it split up throughout the day. I just got my MRI results back and they said it was "normal" so now they want to do a lumbar puncture. I am a little upset because I feel like my neuro believes i have MS and is desperately looking for confirmation somehow, so in a way I feel like I am still stuck in the middle...without the fortune of "knowing my enemy"..i too desire that...better to know what I am facing. I agree with you about trying to do things now to prevent the regrets later. I too get a lot of people that don't understand because they think I look fine too...it is hard to explain and I don't even bother to most people...it only frustrates me more. I am ...right now just trying to be patient and believe...and continue to look for answers, i believe that to a degree I must take responsibility for my conditions, it is difficult to find the time with a doctor in a 15 minute visit to explain and try to connect the dots. The one advantage i do have is that I wasa military brat so ALL of my medical records up until age 20 are in one giant file that I have now. I am in the process of organizing things and I found a report from when i was 16(10 years ago) that said I was hypothyroid according to labs...it says " teenage girl complains of exhaustion after school , extreme lethargy in the afternoon and nightime insomnia" labs indicate low functioning thyroid" i can't believe I was never told or treated for that until this year...so 10 years I thought i was just sleepy in the afternoons for no reason.....and it was in that file all along. My PCP has a copy of these records and she believes that having gone untreated for 10 years has likely exacerbated the Hashi's and probably is to blame for my terribly complicated pregnancies. I've decided to finish my transition to a healthier lifestyle and see how much difference it makes as well.....anyways forgive my long rant again.....thank you again for your input
Posted 3/26/2008 2:39 AM (GMT 0)
Thank you for your words...and I guess I should explain myself a bit as I am new here....I agree with what you are saying, but by recovering, I mean with realistic expectations that I can get back to a point where I don't have to drag myself through life each day and put on the make believe "everything's fine" look. I have fully accepted that I will have to take medication for life...the thyroid. like i said, I cried for a few days when I found out, but then I accepted it and embraced the new hope of feeling better. I was also hopeful that my hair would stop coming out in clumps(no luck yet)I'm on 2.5 grains and i take it split up throughout the day. I just got my MRI results back and they said it was "normal" so now they want to do a lumbar puncture. I am a little upset because I feel like my neuro believes i have MS and is desperately looking for confirmation somehow, so in a way I feel like I am still stuck in the middle...without the fortune of "knowing my enemy"..i too desire that...better to know what I am facing. I agree with you about trying to do things now to prevent the regrets later. I too get a lot of people that don't understand because they think I look fine too...it is hard to explain and I don't even bother to most people...it only frustrates me more. I am ...right now just trying to be patient and believe...and continue to look for answers, i believe that to a degree I must take responsibility for my conditions, it is difficult to find the time with a doctor in a 15 minute visit to explain and try to connect the dots. The one advantage i do have is that I wasa military brat so ALL of my medical records up until age 20 are in one giant file that I have now. I am in the process of organizing things and I found a report from when i was 16(10 years ago) that said I was hypothyroid according to labs...it says " teenage girl complains of exhaustion after school , extreme lethargy in the afternoon and nightime insomnia" labs indicate low functioning thyroid" i can't believe I was never told or treated for that until this year...so 10 years I thought i was just sleepy in the afternoons for no reason.....and it was in that file all along. My PCP has a copy of these records and she believes that having gone untreated for 10 years has likely exacerbated the Hashi's and probably is to blame for my terribly complicated pregnancies. I've decided to finish my transition to a healthier lifestyle and see how much difference it makes as well.....anyways forgive my long rant again.....thank you again for your input
Posted 3/26/2008 2:42 AM (GMT 0)
I also read your post but without reading all others input as i wanted to speak on what i can see from your posts.

If it is ms you cannot cure it, yes its very very common to have possible/probable things , sometimes a lesion will show that hadn't showed earlier but it might not as well (this part can be frustrating)

Your hot tub issue.

Ms as you know by the other posts im sure and some things youve read, is heat sensitive type of thing which can "flare" you or worsen your symptoms. Its a big avoidable no no to get in a hot tub but you didnt know.
Thyroid trouble can be to a point that it can cause heat problems to so please ask you neuro about this as even though hes not the one who diagnosed your thyroid problem it is important to sometimes remind them that you do have that going on as well...

I dont think its awful to want to invest or try what you feel could help for other diseases well let me say disorders (some are not necessarily for all of life but some are)..some are progressive some have treatment.

The urine problem if can be from bladder issues or since youve had constipation as of late (my first time was this past 2 weeks w/blockage that finally resolved. (it can be a bit tricky to know whats what)

dont beat yourself up. Ofentimes a spouse is in exactly what you said. denial . Theyd rather believe youd pull through all of this and especially since youve already shown such a strong lfie in college w/kids (i applaud you)..but stress can cause alot of things to add to this mess. (no its not all in your head though!).

I'm so very sorry to you. I think you did the right thing for checking the outstsanding bill as evokeds are machines they use to check your delays in eyes/ears/hand, feet.......etc......and he surely didnt do these unless he has a room at his practice (my neuro does) but that takes all day long almost to complete and have read.
I dont think you had this done unless you recall feeling zapped in your feet , staring at a red ball on a tv/computer type screen or clicks going into your ears via headphones.

Also. In the beginning we do as Deb said she did. We run to disprove it. We are human and hope we dont have this and maybe theres a better explanation of whats going on. It can also get freaking in both extremes , some have neuros who wont test them further and leave them in limbo land, it does sound like they want to get yours checked though. when i say "leave" very hesitant to even put possible or probable until all things of older criteria show up and can be a long long wait. A friend in new zealand, took 8yrs. So do be happy that they are investigating this even if its to find out its not it..

The spinal can show obands and that will more than likely get the dx of MS for you to deal with the bull (if they are there) if they are not it might be a longer wait....(it stinks lol)

I agree on the Armour containing wht you said and thats what im on for low thyroid (again thyroid can cause heat problems, but not usually from a hot tub that i know of)


Its frustrating and if you wish your hubby to not be so in denial (although its probably as normal as us trying to "outrun a dx and then running to try to find one for an answer, in the beginning")) maybe you should let him share reading this thread with you to know that your not alone.

I have alot of neuropathic pain. Im sorry you have pain in your spine , i also have many problems with mine.

autoimmunes sometimes do bring friends (what i call it)...
other things w/certain ones or make us more prone to having some that may later be linked more carefully but for now thats what they tell us.
We can have more than 1. I would think this would be less probable for the larger percent but thats not true as you can see with a few on this site or most on the lupus site.


ill pray for you, your proactive and will be able to handle alot of this but you do have alot of normal life stressors, kids , classes (career) so alot of these auto's can be flared by stress, you cant do without stress but you can try to retrain youself not to respond so strongly to it to see what eases and what does not.

thanks

kiera

Posted 3/27/2008 11:50 AM (GMT 0)
I just got my MRI results back and they said it was "normal" so now they want to do a lumbar puncture. I am a little upset because I feel like my neuro believes i have MS and is desperately looking for confirmation somehow, so in a way I feel like I am still stuck in the middle...without the fortune of "knowing my enemy"..i too desire that...better to know what I am facing.

 

Onthejournney, I just hit this point myself with the MRI's I think... the nurse said "nothing abnormal" but I have to wait for followup before I see neuro in May to find out what he thinks is not abnormal now.(nurses have been known to say the wrong thing to me in the past).. but hang in there... one thing I've learned over the years is persistence is important, faith and common sense sustain you thru it and in the end hopefully we get answers. And when I don't I just keep dealing with it... life does go on. I figure eventually it'll make itself clear exactly what's happening and then the neuro will have it all in his hands.

 

Posted 3/27/2008 2:17 PM (GMT 0)

Wow Deb,

You have a great attitude!  You will go far with this sort if "bring it on, I can take it" outlook.  You are right, waiting can be hard so get on with living and eventually you will have your answers.  Just be assertive with your doctors noting all new symptoms and such.  Good luck and keep us posted.

Love and prayers,

Posted 3/28/2008 1:29 AM (GMT 0)
onthejourney,

         Welcome to HealingWell, you have picked a great site to post on! I see violets has all ready been here to let you know her lyme story. When I read your post and saw you had rashes. A lot of your symptoms sound lyme suspicious. I would advise you to also check out the lyme and Fibro forum. My only concern with a fibro diagnosis is that Fibro is a diagnosis of unknown cause. Our bodies start attacking themselves for a reason, something has to start the autoimmune response.

           I also wanted to stress that there is NO accurate test for lyme and the CDC even states this on thier website, so any dr that tells you your test was negative can not bet his life on that and I personally know people who have been told by their dr the test was negative only to be found out later it was positive. The CDC also states that lyme should be a clinical diagnosis which most drs do not even know that part of the CDC criteria. Trust your gut, you are the only one who feels your pain. If you are sick then keep on persisting with your drs to find out why!! Good luck! Peace!

 

Posted 3/28/2008 1:51 AM (GMT 0)
Thanks Gretchen, I've got alot of experience surviving in general but most recently, I've got this best friend who recently went thru 2yrs of fighting docs thru heck to finally get her dx of Cushings and get the TWO functioning tumors she had on her pituitary removed... she's an inspiration in positive attitudes and persistence. She keeps me squarely on track. :)
Posted 4/3/2008 7:59 PM (GMT 0)
You and I have a lot in common, I am currently in Iowa and I see the realm of doc's that all have a different diagnosis for me ranging from MS, pagets, fibromyalgia, etc.   I do have b-12 defficency, arthritis with bone spurs, IBS, lactose itollerent, sinus diseaseand I have had a fracured leg for 1year without healing sad   I also have had over 30 kidney stones which may or may not have anything to do with any of this other stuff.

 I have a up coming appointment at the Mayo Clinic in MN because my doc's can not agree with what I have.  our symptoms are a lot a like, except mine is my right side, which happens to be my dominate hand.  I have had testing for about 18 months now, at first they thought I had a stroke, but sometimes my right side works and sometimes it doesn't. I am also a mother of 4 boys 19,15,11 and 4. I am looking for others like me to compare notes with.  Maybe find a common ground and possiable reason for me not having control of my life.  I would be glad to compare notes after my appointment up there. 

 My spelling and grammer are bad but that seems to be part of what is going on.

Posted 4/7/2008 4:52 AM (GMT 0)
I feel like I have a lot in common with this thread, too! I came here to look around and see if there was anyone else with Fibro and MS symptoms or diagnosis. I am in my early 30's but have had the dx of idiopathic gastroparesis since my early 20's and have had a gastric stimulator implanted for the past 6 years to help make my stomach work. I also have Fibro which was dx'd about 2 years ago along with dx'd migraines and the symptoms just keep worsening and changing on me. After talking with a friend who is gearing up for our local MS 150 I started looking into it and had no idea that there has been research going on that shows a very possible and very strong link between Fibro and MS. But, I am confused as to which doctor I need to talk with about this? Should I first discuss this with my rheumatologist-whom I see on the 15th of this month- or my neurologist- whom I don't see again until early next month?
I will say that through all of these years of fighting diseases and ocassionally doctors and insurance companies, a possitive mental attitude and has been my body's greatest defense. Without it, what else does our body have to fall back on?! And it's wonderful to read here how so many people believe this, too! Keep up the good fight because we are not sick, we are people LIVING with an illness!
Posted 4/9/2008 3:58 AM (GMT 0)

I agree that some people with one autoimmune disease may be susceptible to having another.  I have been diagnosed hypothyroidism, multiple sclerosis and perhaps soon to be diagnosed with psoriasis. 

 

One neurologist thought I might have Lupus based on a rash on my face, while the other thought MS.  I found an interesting website that has a comparison chart for MS, Fibro, and Lupus:

 

~ Symptom Cross-Reference Chart ~

 

http://www2170.ssldomain.com/msakc/Articles/MSFibroLupus.htm

 

I would be interested in any other autoimmune comparison charts, if anyone knows of one.

Posted 4/12/2008 5:47 AM (GMT 0)
 Nautical, thanks for this cross reference chart! I really like it... I've been so tempted thru out my hunt for the reason to all this... to do just this on some kind of spread sheet and then color in all that apply to me and see which one wins my dx! tongue  

 

Posted 6/26/2010 6:36 PM (GMT 0)
I am tooo tired to comment very much but boy am I glad that I have found you girls? I will join in after a few hours sleep...Nite to all and also I send lots of love and hugs! pfromoz
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