Suspecting MS

[quillswriting]

I have a question for anyone who can help:-

2 yrs ago started with muscle pains, pins and needles, tingling.  One moring woke up with pins and needles from waist down, had to crawl down the stairs literally.  Fatigue, out of breath and aching all over from climbing stairs.

End of 2005 - got Vertigo.  It lasted 2-3 weeks.  Went away again.

2006 - Pregnant and felt good.

Week before due date got stars in front of eyes, postural orthostatic hypotension, faint feeling.

2007 - Felt fine but got spots in front of eyes a lot - several black spots in front of eyes just after birth, nearly fainted while giving birth.  Bloods were normal, sent home with baby after 2 days.  Recovery from birth fine.  TIred and sore but put it down to recovery pains.

March 07 - Paresthesias, trembling, cold tingling sensation down legs, itching all over with nothing on skin to indicate why, floaters in vision field daily but not as severe as before and just after the birth.  Mood changes - extreme anxiety, could not control it.  Lost appetite, developed severe OCD.

April 07 - Petechiae, trembling, blood pressure spikes and sinus tachycardia, worse when standing up or moving, would calm down if I laid down or sat still for over an hour, would take 2 hrs to calm.  Sometimes resting rate was 90bpm would rise to 120 odd bpm from standing to just walking into another room.  PACS/PVCs after climbing stairs, also leg pains climbing stairs.  Painful and inflammed joints - occaisional.  Muscle pains.  Lost 2 stone in weight, lost a lot of fat mass and muscles weakened.  Fingernail colour changes, patchy looking fingernails.  Blood tests - full screening - all fine.

May 07 - started eating normally again, got lots of reflux, burping, on meds for tachy.  Alternate pupil dilation - pupils responding slower to changes in light.  One bigger than the other, next day, the opposite one would be bigger than the other.

On going for over 2 yrs - twitching neck/spasm but felt it in back of head too.  

Recently - nerve pains/random shooting pains accompanied by lights/flashes in front of eyes/floaters simulatneously.  Pain to hands from typing, like hands become tired and sore.  

Hypersensitive to hot and cold.  Hot bath sent heart rate way up and had to get out.  Cool weather makes one hand cold and other normal, cold hand hurts.  Slower capilliary refill.  

More bloods done - results normal.  Chest x ray - normal.  Blood pressure only went up with the tachy but otherwise normal.  Tingling sensations in mouth, tips of fingers/electric shock sensations in fingers.  Cluster headaches - random.  Aching muscles. Crimson cresents in throat - red throat without pain - normally a sign of CFS.

Refused MRI by GP - can't get another GP as I'm in a small town, in UK.  Been referred to a shrink and given anti depressants - GP told me it's Post Natal Depression.  

My question - do others with MS have any of these physical symptoms?  I'm scared that it's a brain tumor.  Getting worse on a frequent basis, been to hospital and got told same verdict as GP because bloods were fine.  

Leah

[jenn38018]

No problem Quix!  We learn something new every day.  I don't know how I am going to go without my hot baths if MS is what I have though!  I have my first appointment with my new neuro today!  I am excited and nervous.  I will let you know how it goes.

[Quixotic1]

Hi, guys, I want to read everything in this thread , but it's too late tonight.

I need to retract something I said earlier about the effect of getting hot.  I mentioned to my MS specialist that after a long hot shower I briefly had a new symptom.  He is usually very calm, but he said immediately, "That's a big NO NO!"  He said that elevated core temperature, even a partial degree, can activate the disease.  It can even sometimes trigger a full relapse!!

I had been under the misconception that warmth just enhanced the severity of the symptoms without doing damage.  The medical recommendation is to take tepid brief showers or baths only!!! (yuck!)  Another pleasure lost!

Jenn - I'm really sorry about this.  I really thought the exacerbation of symptoms was benign and temporary.

Quix

[jenn38018]

I got your email addy this time!  I am getting tired from typing tonight, but I will email you with my address sometime tomorrow.  I understand what you are going through with your husband.  It does sound like you had an anxiety attack.  Ofcourse, if you do have any of the above mentioned disorders, anxiety and stress can definitely intensify symptoms.  It may have been a combination of both.  

I have had some rounds with my husband on the whole excercising thing.  I complain about wanting to lose weight a lot and all he says is why don't you excercise.  What most people don't understand is that it is really hard and kinda scary to excercise for people with these disorders.  As I told you before, it is very important to stay active, but you don't want to overdo it or you will trigger a flare up of symptoms and end up in the bed for a week.  I think walking twenty minutes up hill is little too much to take on for someone experiencing your symptoms right now.  I can't stress enough how much it would help if your husband would take the time to really learn some things about these disorders.  I don't really know your situation with your husband, he may have already done this.  I just know that my husband has still not really taken the time to understand what I am going through after years of suffering, and it has really taken a toll on our relationship.  We also have some great support groups in the states for people just like you.  You can bring your spouse to these groups and let them meet and talk with other spouses of people suffering.  I have heard it helps tremendously if you can just get them there.  My husband and I haven't made it to one of those groups yet, so I guess I should practice what I preach!  Also, it is really easy to become completely self-absorbed when you are feeling bad all of the time.  Try to remember that he is going through this too.  He may be feeling resentful and neglected.  You may find that sitting down and communicating some of those feelings while you are both calm to be helpful.  Ofcourse, I am sure I am telling you stuff you already know.  Just want you to know that what you and your husband are going through is completely normal and almost expected when struggling with a disease.

[quillswriting]

Lextgrim is my husband's username, yes.

[quillswriting]

Hi Jenn, I'll try again with the email thing.  

Thanks for your message.  I had a major bad "do" this evening, possibly a panic attack, it was horrible.  I was having a row with my husband and then words just would not come out properly, my tongue was spasming and I was unable to speak the words even though I was thinking them.  Then my neck started twitching whenever I spoke after that.  I then felt like I wasn't inside my own body, it was scary.  I then started crying and I could feel my muscles jerking really strong, the crying made me more out of breath than normal.  I went upstairs and phoned my mother in law who said it was just anxiety.  

We had the row because I wanted a glass of wine really bad!  And it's Sunday and in the UK shops close at 4pm on Sundays.  There is an off licence/liquor store open but it will be closed in half an hour.  My husband wanted me to walk up there and get my own wine but it is a long walk up hill.  It is about 20 minutes walk.  I just can't do it.  So he said "Tough, you're not getting any wine then."  He's tryin to make me exercise.  But I just don't feel ready to scale that hill yet.  A glass of wine on a night is the only thing that calms me down.  My family life is very very stressful at the moment.

quillswritingyt at aol dot com

[jenn38018]

Hey.  I just wanted to make sure that I am talking to the same person on here.  Are you using two different usernames on here (quillswriting and lextgrim)?  I was assuming that one is your husband's and you post under his name sometimes.  Please let me know if I am talking to two different people!  It is very easy for me to get confused, so I just wanted to check:)

Jenn

[jenn38018]

Looks like they cleared your email address from the post.  Must be a security thing or something.  It's a shame.  I would enjoy chatting more.  Just keep me posted on the forum I guess, and let me know if you just need to talk to someone.  

I am not familiar with your mother's condition, but I will definitely look and up and learn some things.  I have a great curiosity for all things medical.  Hopefully that will make me a better nurse once I am out of school!  I am also going to check into the mumps and see if that can trigger any of these conditions.  I will be interested to find out.

As far as the bathing, I still take hot baths even though they do trigger my symptoms to worsen.  Quixotic gave me some good advice one night when I had taken a hot bath and had some very strange and scary symptoms.  She told me that now I know the symptoms won't kill me or harm me, so to just ride them out after the bath.  She suggested just relaxing after the bath and to sink into the feelings that I am having.  My symptoms after a bath are not painful.  I just get very lethargic and my body starts feeling very heavy like I am sinking into the floor.  Then I get the travelling tingling and numbness along with some speech slurring and blurry vision.  It lasts for an hour or so and then goes away.  I just can't give up my hot baths though.  The are one of my only luxuries as a mother of two!  If you are experiencing painful symptoms after a hot bath, then I would suggest to continue with the luke warm baths until you can see a good doctor and get better advice.  

The weather can definitely do a number on your body.  I feel like an old lady because I always know when rain is coming:)  Be very careful to bundle yourself up with gloves, scarves, etc. when it is especially chilly outside. The main thing is just to keep your body temperature as constant as possible.  Extreme fluctuations in either direction is not good for you.  I am lucky to not have to deal with extremely cold conditions for much of the year.  I live in the southern united states and we don't get really brutal winters.  My problem is the heat.  The temp today is supposed to get up to 95 degress celsius with a very high humidity.  You almost feel like you can't breath in that kind of weather, and this isn't even the hottest part of the summer yet!  

I wish I could give you better advice than this, but as you know I still don't have much of my issues figured out.  I am a shoulder for you if you need it though!  Take care.

Jenn

[Lextgrim]

Thanks for your lovely message.  I was thinking, if you wish to carry on chatting, here is my email address: ***@****  if you wish to even just talk about what you're going through, I can relate.

I have recently been in touch with the ME association in my local area and even though they have not been able to assist me much unless i get a diagnosis, I have offered my help to them in any way I can.  I have a writing business so I have offered to do research and help with their articles for free, and to arrange charity events to raise money for research into things like CFS, Fibro, etc...

Evidently, my husband's grandmother has ME and has been diagnosed so I plan to chat to her more about it.  

My mum has been told she has ankylosing spondilitis so I found out today, I wasn't sure of the name of her condition you see so I checked.  She's been telling me to ask for futher testing for ages as when I was a teenager, in my later teens I had severe pain which were put down to growing pains.  I have never been that energetic as a teenager sports wise, always ached and got tired easy.  Perhaps this has been something on-going for a while and has worsened since the bad dose of mumps 2 yrs back and giving birth 6 months ago.

I would like to ask for some advice on some simple things like for example, bathing etc... at the moment i am using warm-lukewarm water like i did when I was pregnant, last time i tried a hot bath it shocked my system somewhat, my heart rate raced.  The weather here has been cold for summer and I have felt that a lot more, it has been raining lots.  I tend to feel not so bad when the weather is hot, I try and go out into the garden with my son.

Anyway, it would be nice to keep chatting via email if that is ok?  It's good to know that I am not alone with this.

[jenn38018]

I totally forgot that you said you were in the UK.  I have talked to some other people on this board from there and have heard that the healthcare system is not as good as ours.  I really hate to hear that.  I live in Memphis, TN in the US and we have a large number of doctors and practices.  I am lucky in that respect.  I also have great insurance through my husband's employer wich covers most of what I need.  I cannot imagine going through what you are and not being able to do anything about it.  I suspect that maybe the doctors with your group are just not up to date on the new advances in these diseases.  It is so easy for a doctor that doesn't have all of the answers to blame your symptoms on psychological problems.  I would just rather they tell me they don't know what it wrong with me!

My best advice in addition to what you are already doing is to learn what lifestyle changes you can make to minimize your symptoms right now, until you can get a diagnosis.  If it is MS, you know that you should avoid extreme temp. changes, high stress situations, etc.  There are also some dietary ways to help with pain and stiffness, as well as helping your immune system.  Salmon is the best thing to eat for inflammation, and ofcourse you should be eating lots of fresh fruit and vegetables to get your antioxidants.  Also, I don't know if you have access there, but an indoor swimming pool with water aerobics is a wonderful way to keep you active without putting stress on your joints and muscles.  There is a fine balance between keeping active and overdoing it, so try to figure that out.  Getting really good sleep at night helps me more than anything.  I take Ambien CR to help get me into that deep REM sleep.  My doc told me that people who suffer from these autoimmune disorders never are able to get into that state of sleep, so your body never recovers and restores itself from the day before.  I don't know if you can get your hands on a sleep aid like this, but it might be helpful.  Do be careful about what medications you do take.  I have discovered that over the past several years I have become hypersensitive to just about all medications.  I get pretty much every side-effect listed on the back of the medicine bottle.  I also developed allergies to a whole group of narcotics after having my second child.  I was never allergic to anything in my entire life until then.  

It sounds like you have a good support system in your family.  That is really helpful.  My husband has a hard time understanding my illness.  I look perfectly normal, and sometimes I wonder if he thinks I am just being whiny and lazy.  We fight quite a bit about it.  That added stress is certainly no good for me.  Make sure you commuicate with your husband about how you feel and, get him to do some reading of his own on all of this if he is willing.  My mother understands what I am going through because she has fibromyalgia, schleroderma, raynaud's, arthritis of the spine with slight scoliosis, and just had bilateral knee replacement surgery which caused her to develop a nerve disorder called RSD in her right leg and foot.  She and I tend to lean on each other for support.  Do you know if your mother's spinal condition is autoimmune in nature?  It sounds like you have sufficient family medical history to warrant further testing.

I really do feel for you and your situation.  I know how hard this is with small children, especially if you are experiencing financial strain.  I have enjoyed chatting with you and hope you will keep me informed on how you are doing.

[Lextgrim]

Hi Jenn,

I live in a small town in the UK.  There are 3 practices round here.  Theres Northgate which I am at, Stuart Road where I tried to get into but are full and Friargate who are also not currently taking on new patients, plus my friend Liza has MS and they did believe her, although she got her MRI done, and they found it, it took over 2 years for her to convince them, she eventually got an advocate to help her.

There are 6 GP's at Northgate and I have seen all of them and they all agree with each other over my issue.  I have just changed health visitor who is lovely and I have found an advocate who will help me, my mother is also compiling a letter to my doctor noting the amount of times I have had problems physically and discussed them with her, she has a spinal condition which affects nerves etc... sometimes and it took her 10 years to get diagnosed, she gets very similar symptoms to me but I have had bloods taken in relation to such conditions and they were normal.  

It's a shame really, my grandfather was a doctor, a popular Harley Street Doctor in London, he helped my mum get diagnosed and treated her privately.  I have enquired about med insurance, I'm in the UK so we have BUPA, but my income doesn't yet cover it enough, I have started up a small business and my income is low until the completion of my first contract - I'm a writer.  I make very little off my other work because it's mainly articles and it pays the rent, the bills, things for my baby and food, plus business expenses.  So I use the NHS which is pretty rubbish with its waiting lists.  I would be waiting months for an MRI and an MRI is expensive private.

It's funny really, in the UK we all pay National Insurance out of our wages etc... and yet we have to wait months to years for treatment.  I can't wait for my contract to be completed because then I can pay for a lot of things myself, but at the moment I am supporting a family of three.  My husband is trying to get a small business off the ground too but it is not going anywhere, he also looks after our son pretty much full time during the day while I work.

[jenn38018]

It sounds like you definitely need to change GP practices, and also request copies of all of your medical records and lab tests from them.  They cannot deny you access to those records.  They may require that you pay a fee for the copies or sign a waiver to have them released to you, but they must release them at your request.  Then find a doctor that specializes in the symptoms that you are having.  Do some asking around in your area and try to find someone with a bedside manner that will fit your needs.  Take all of your records and lab tests to have a second opinion on them.  Once you have established a working relationship with your new doc, they will probably want to do more testing on you.  They may ask that you do go and be evaluated by a psychologist.  Depression and anxiety are symptoms of every disease or disorder that we have discussed.  There is nothing wrong with admitting that.  Just make sure they don't try to write you off as crazy.  You have to make it clear that the symptoms are causing the depression and anxiety, not the other way around.  I still urge you to find a doc who knows a good deal about fibro, cfs, etc.  These disorders exist in the absence of any physical or lab findings.  All other diseases must be ruled out in order to make a diagnosis of one of these disorders.  It takes someone very specialized to be able to accurately diagnose you with fibro or cfs.  I still think you also have enough symptoms that you should be sent to a neuro and have an mri done as well.  Do you have an HMO or PPO plan of insurance?  Where do you live?  

[Lextgrim]

Thanks for your message - I think the biggest frustration is that it has worsened very quickly compared to the last "flare up".  And it scared me.  I have been over aware of the fast pulse I know it has been fast, duing the ECG I was told I had Sinus Tachycardia.

I think I was checked for lupus, when I had the first lot of tests and they said I didn't have it, they checked me 2 yrs ago and March this year.  RH factor was tested quite a while back too and nothing showed up.  I dont' know my levels, my GP practice wont tell me, they did say at one occaision that the calcium was slightly up, then I had a second test along with albumin and it was normal again.  But apart from that all things including sed rate etc... were apparently normal.  But then I think - are they?  Because when the calcium level was up they did not inform me, it was when I saw a locum who looked through my notes and said "Are you aware that your calcium levels were slightly up?" I said no.  So I don't know what that practice are playing at.  I have rang my GP severeal times and she insists that there is nothing showing up in the bloods.  And so blames psychological problems.  I asked for an MRI and she said "We feel that you don['t need one and need to tackle your psychological issue."

[jenn38018]

I have had really weird heart symptoms for years.  I don't know if it is anxiety induced, or if it is related to my underlying condition.  I feel like my heart is racing a lot of the time, but I have had no proof show up on any tests.  I think with many of these diseases (fibro, CFS, MS, etc.) most patients say they are much more aware of their heart pumping and their pulse.  It could have to do with an inhanced sensitivity to pain and pretty much all senses.  That may be why I am thinking my heart is racing when it is really showing up normal.  I recently had a holter monitor done and experienced some prolonged QTc intervals.  This is not very common, so you are probably not familiar with this (I wasn't before I started doing some research).  I also have arrythmias from time to time.  My other symptoms are just too lengthy to list right now.  

I really think you could benefit from seeing a rheumatologist if you haven't already.  Many diseases can mimic MS and should be ruled out first.  Have you had your lupus titer checked ever?  Also, what was the result of your ANA and sed rates?  Have you ever had your RH factor tested?  Terry's nails can be associated with SLE (lupus) and many of your symptoms also fit this disease (It is known as the great mimicker because of how it follows many other disease's symptoms).  The nail thing could also be associated with Raynaud's phenomenon.  My mother has this and also has Schleroderma.  This is a disorder that goes along with many connective tissue diseases, and as Quix just taught me, can be experienced by itself.

Try not to discouraged by the process of trying to get diagnosed.  My process of symptomology and seeing various doctors has been going on for the past 9 years. I still don't have an answer.  There is just not enough known about these diseases right now, but the research gets further every year.  The best thing you can do is educate yourself as much as possible, and be your own patient advocate.  Do NOT let anyone make you feel like you are crazy.  It's easy to feel like a hypochondriac when you are going through this.  Be confident that you know your body and try to express your symptoms to people as completely and concisely as possible.  I was told to make a diary of symptoms, and that has really helped me.  Please let me know if you need anything else.  The people on this forum are great and are here to help you!

[quillswriting]

In addition to my posting, I also had the tachycardia on-going.  I am on beta blockers to control the rate but without them my rate is always up.  Have you experienced the same?  There were the odd occaisions where it would go down when I was sat reading for a couple of hours, but most of the time it was up.  It was really frightening.  I have also ended up with Terry's nails?  That occured in April the tips went red, then more recently the colour of the rest of them has changed and the moons have disappeared.  I am planning to take Vitamin B12 as I have heard that nail changes like that can be due to vitamin deficiency, although I was tested for all sorts including deficiencies when I had my bloods taken.

I've had (as far as I know, I may have had more) Full Blood Count or CBC, Serum levels - Calcium, ALbumin, Bilirubin, Potassium, Magnesium, Sodium.  Urea and Electrolytes, ANA, ESR, EFGR, Blood Cultures for bacterial infection, blood tests for inflammation, random glucose, kidney function, creatinine, creatine kinaise, B12, thyroid.  I think there were more but I was not told what they were, what i really need is a report of all of the bloods taken.

[quillswriting]

Thanks for your message, it is reassuring to know I am not alone with these things.  My previous GP suspected M.E. when all the trouble first stared.  It actually started after I had a dose of mumps which I caught from someone at work.  I had it for 3 weeks, but on top of that I had a tooth infection and was on antibiotics, it really knocked me for six.  My GP at the time sent me for blood tests which were normal.  He said it was Post Viral Fatigue, then as it went on for months he then said "It could be M.E. we shall look into it." then I moved and had to register at a new practice who have not helped me at all and have sent me to a psychiatrist insisting that it is all in my mind!  

[jenn38018]

You are experiencing a lot of the same symptoms that I have been having for the last four years.  The pattern of pregnancy and symptoms also is similar, although I had two pregnancies.  I have been diagnosed with fibromyalgia, but do not think that is what all of this is.  I have also considered CFS, and have been tested for MS in the past.  I am going to a neuro on Monday to be tested again.  You can take a look at some of my previous postings to see my whole story and all of my symptoms.  Quixotic has been a really helpful person to talk to.  She will probably post with some advice to you at some point if she is not feeling too poorly this week.  She is probably the best person on this forum to get advice from concerning MS.  Good luck  to you, and I really pray you find an answer.