Aa
Why do things come and go...?
Hello again. Hope everyone is doing ok?
My question is, why do I seem to get new symptoms and disappearing symptoms all the time...does anyone understand this. I have what I call 'hard core' symptoms which just won't go away. My 'hard core' symptoms are leg weakness (although it is slowly improving), numbness in left foot, left hand, face on the left (did have total left leg numbness but this now comes and goes), tinnitus, twitching/jumping, burning in perlvis area and fatigue. I've had these symptoms since May.
New symptoms are, intense neck spasms, heaving/throbbing legs, random muscles spasms (which you can see), icy cold feeling in leg following shower/heat, aching body all over, headache, and sore joints. LP head seems to have finally gone...some good news at least.
Symptoms which I have experienced but which have now been gone for a few weeks are electric shocks, pins and neddles and dizziness.
Can anyone explain why this would happen.
Also, I have a follow up appointment on Wed with my doctor, how do you explain how you are feeling and describe the new symptoms without sounding completely mad. I just feel like a hypo going in saying all of this?
Any help would be greatly appreciated.
Many thanks
My question is, why do I seem to get new symptoms and disappearing symptoms all the time...does anyone understand this. I have what I call 'hard core' symptoms which just won't go away. My 'hard core' symptoms are leg weakness (although it is slowly improving), numbness in left foot, left hand, face on the left (did have total left leg numbness but this now comes and goes), tinnitus, twitching/jumping, burning in perlvis area and fatigue. I've had these symptoms since May.
New symptoms are, intense neck spasms, heaving/throbbing legs, random muscles spasms (which you can see), icy cold feeling in leg following shower/heat, aching body all over, headache, and sore joints. LP head seems to have finally gone...some good news at least.
Symptoms which I have experienced but which have now been gone for a few weeks are electric shocks, pins and neddles and dizziness.
Can anyone explain why this would happen.
Also, I have a follow up appointment on Wed with my doctor, how do you explain how you are feeling and describe the new symptoms without sounding completely mad. I just feel like a hypo going in saying all of this?
Any help would be greatly appreciated.
Many thanks
Hi Em
Re: I've been like this pretty much for 3 months now...do exacerbations last this long...?
Very hard telling how long they last. An exacerbation or relapse/attack/flareup can last from several days to several weeks, or even in some cases it extends to months. The symptoms vary from mild to interfering with your daily routines, etc. Sometimes you have new symptoms along with the old, and sometimes you lose some of the old symptoms and gain new ones in their place. It is so unpredictable and everybody is different. Nothing is cut and dried with MS.
Let's just hope yours go away quickly. Keep posting re: results and Doctor's visits.
I Marcie
Re: I've been like this pretty much for 3 months now...do exacerbations last this long...?
Very hard telling how long they last. An exacerbation or relapse/attack/flareup can last from several days to several weeks, or even in some cases it extends to months. The symptoms vary from mild to interfering with your daily routines, etc. Sometimes you have new symptoms along with the old, and sometimes you lose some of the old symptoms and gain new ones in their place. It is so unpredictable and everybody is different. Nothing is cut and dried with MS.
Let's just hope yours go away quickly. Keep posting re: results and Doctor's visits.
I Marcie
Thankfully, it hasn't been very long for me. I'm not sure what the burning cramps are. I do know that if you are dehydrated, it can happen for sure - your potassium, water, etc. Do you have your questions written down for the Dr? It's so easy to get sidetracked. Also, do you have your symptom list ready for him too? Don't feel funny to have it ready - really, if the Dr. is good, they will be so happy you've done so. Wishing all the best for you tomorrow - even if it is "just" a follow up, use it as an opportunity to get some answers to those questions. So glad your husband is going w/you. I found it helpful to have someone write down things for me too. It's too easy to forget when it's all you can do to remember what you want ask, and then comprehend the answer, and then remember it all after your done. Notes work.
sl
sl
Thanks again. Yes my appointment is tomorrow but not expecting any new news tomorrow...I really think it's just a follow up from the blood patch but my husband and I have a few questions.
You seem to have had a long hard slog to diagnosis...I'm really sorry. I think this is the best site for wrapping your head around things and getting some support.
By the way, I've had the most horrible burning cramps in my legs over the last 3 days....what is all that about?
I might put my timeline up on a new post...now I know you didn't laugh at how bad it was.....I tried!!
Thanks again.
Take care em x
You seem to have had a long hard slog to diagnosis...I'm really sorry. I think this is the best site for wrapping your head around things and getting some support.
By the way, I've had the most horrible burning cramps in my legs over the last 3 days....what is all that about?
I might put my timeline up on a new post...now I know you didn't laugh at how bad it was.....I tried!!
Thanks again.
Take care em x
p.s. I just re-read your timeline - oh, my Gosh! You have had so much to contend w/the past 10 years. This must feel like starting all over. Looking and digging for answers speaks to your strength. I hope some of the others have an opportunity to look at your timeline (which is a really great start), they have some really great suggestions to tighten it up and square it away. . .
Your welcome. I'm not too experienced w/this, so can only share what I've tried to do. My Neuro, after a long line of testing dx'd me with MS, however, wanted me to have a 2nd opinion. The 2nd did agree w/his dx. The 2nd Neuro's report has not come in yet, they said it could take as long as 8 weeks and it's only been 4. So, at the end of the month (hopefully it's in by then), I have a follow-up scheduled w/the 1st one to see what his ideas are in regards to my next steps. I've not yet wrapped my head around all this yet too well. Is your appt. tomorrow?
Hi Sllowe, hope you are ok? Thanks for the advice.
Have you been diagnosed or are you a fellow limbolander?
What did you think of the time.....naff or ok?
Em
Have you been diagnosed or are you a fellow limbolander?
What did you think of the time.....naff or ok?
Em
Hi there,
I'm so glad you've gotten some relief w/the headaches. Also, I too had a hard time w/explaining the existing sypmptoms and/or old symptoms to the Dr. I ended up typing them up grouped them into 2 categories:
- Current Physical and Mental Status (I could of picked a better title I suppose). I included things like varying spasms (described them), eyes, clumbsy, anxious (jumpy movements, nerves, etc.), headaches, and so on.
- Improvements (included appetite, chewing, speech and a few others). Although I did not give him the list, it helped me keep it organized to explain.
What I had hoped for was that he would actually remember the priors (which was a gamble), and if he didn't, I hoped he'd perhaps jot down what I was saying and have it all on file. It's great you've got your timeline started because now you can refer to it with the new and old symptoms. I hope this helps. I hope your appt. goes well.
sl
I'm so glad you've gotten some relief w/the headaches. Also, I too had a hard time w/explaining the existing sypmptoms and/or old symptoms to the Dr. I ended up typing them up grouped them into 2 categories:
- Current Physical and Mental Status (I could of picked a better title I suppose). I included things like varying spasms (described them), eyes, clumbsy, anxious (jumpy movements, nerves, etc.), headaches, and so on.
- Improvements (included appetite, chewing, speech and a few others). Although I did not give him the list, it helped me keep it organized to explain.
What I had hoped for was that he would actually remember the priors (which was a gamble), and if he didn't, I hoped he'd perhaps jot down what I was saying and have it all on file. It's great you've got your timeline started because now you can refer to it with the new and old symptoms. I hope this helps. I hope your appt. goes well.
sl
Thank you all so much for your comments....it's so great to be able to talk to you guys...I swear this has kept me sane, well as I can be...! I really can't thank you all enough.
Siddy1, my mum is 65 and she says you are as young as the man you feel....! I've just turned 31 by the way and I love relating to you all.
I've actually been busy re-doing my timeline...it's pretty short really compared to other ones I have seen...and here is me moaning about not getting answers yet...feel like a novice now and I think I've been really lucky compared to some people to at least get some answers.
Would you mind, if you get chance looking at it (I've pasted it below). I bet it's awful so I really appreciate the advice from the experts. It's just hard trying to explain what you are still experiencing and things that were there but now aren't although they pop back just once in a while to say hello.....makes my brain hurt even thinking about.
I've been like this pretty much for 3 months now...do exacerbations last this long...?
Anyway...I'm talking too much as normal. Here's the first draft of my timeline...don't laugh...I tried.
Thanks again for all
Em x
***
1998
▪ Diagnosed with Kerataconus. Referred to Scarborough Hospital. Glasses prescribed.
1999
▪ Decline in vision (left eye). Issued with gas permeable contact lenses. Followed by quarterly
check ups.
2001 (July)
▪ Admitted to hospital after suffering numbness, pins and needles down left arm and
face. Symptoms lasted 3 days.
2001 (December)
▪ Constipation for 6 week period. Prescribed lactoloses, fibogel – no response to treatment.
2003 (October)
▪ Racing heart beat, dizziness, tight chest. Referred to hospital for further tests. Put on beta
blockers.
2005
▪ Bouts of back and neck pain, chest tightness. Regular chiropractic treatment..
2005 (September)
▪ Routine smear test. Positive result for cancer. Biopsy done, loop and punch. Third of cervix
removed. Admitted to hospital with infection. Course of intravenous medication. Follow up
smear tests now every 6 months – all clear to date.
2006 (June)
▪ Severe decline in vision, headaches and pain behind eyes. Began trial for 'piggy backed' lenses.
Followed by quarterly check ups.
2006 (November)
▪ Period of fatigue – lasting approximately 2 weeks.
2007 (February)
▪ Severe pain behind eyes, vision distortion and headache. Scan of the back of the eyes taken. All
clear, Prescribed 2 courses of antibiotics for 14 days– no response to treatment. Pain
continued for 3 week period – symptoms disappeared.
▪ Episodes of dizziness and balance problems lasting approximately 2 weeks, Fell down stairs after
loosing balance.
▪ Headaches and left sided facial numbness (intermittent) - lasted approximately 3 week period
▪ Pins and needles in left side of torso and arm (intermittent) – lasted approximately 4 day period.
▪ Painful cramp in left leg - lasted approximately 3 day period.
▪ Fatigue - lasted approximately 3 week period
▪ Experienced problems recalling words and information and at times could not get my words out
properly - lasted approximately 4 week period
▪ ▪Back, neck pain and tight chest. Chiropractic treatment sort.
2007 (May)
▪ Woke during the night with burning pain in heels – occurred 2 consecutive nights.
▪ Burning and cramping sensation in pelvis and groin area (left), back pain. Visited GP. Prescribed
2 courses of antibiotics for suspected infection. Swobs taken – negative. Referred to Gynaecology
(RVI) for ultrasound scan of ovaries and cervix – all clear. Diclofenic prescribed for pain. (Pain
intermittent longest duration 4 week period)
▪ Left leg numbness (total). Referred to Neurology Ward (General). Suspected prolapsed disc – all
clear. Referred to Neurologist.
▪ Left leg weakness (walking with a limp) – still remains to date although improving
▪ Loss of sensation in pelvis area. Hesitant when passing urine = still remains to date
▪ Tinnitus (ringing) in left ear – still remains to date.
▪ Dull Headache.(intermittent) – lasted approximately 3 day period
▪ Fatigue – still remains to date
▪ Balance problem – fell twice whilst at work within 1 week period
2007 (June)
▪ Electric shock down back and legs (intermittent) – for approximately 3 week period
▪ Muscles spasm in leg and lower back – prescribed Diazapan - reduced spasms – still remains to
date
▪ Intolerance to heat - other symptoms are exacerbated – still remains to date
▪ Shaking left hand – for approximately 2 day period
▪ Dizziness (intermittent)– for approximately 2 week period.
▪ Experienced problems recalling words and information and at times could not get my words out
properly.(intermittent) – for approximately 4 week period
▪ Constipation – for approximately 3 week period
▪ Numbness in left hand (partial – 3 fingers) – still remains to date (now total hand numbness)
▪ Tingling sensation in feet and hands (intermittent) – still remains to date
▪ Nerve twitching (which can be seen) – legs and arms (intermittent) – still remains to date
2007 (July)
Appointment with Neurologist. Admitted to hospital for further tests; MRI, LP, Blood Tests.
Ruled our infection, vascular and other conditions including Transverse Mylelitus.
▪ Facial numbness left side of face – still remains to date
▪ Severe headache caused by LP – prescribed Amitriptyline – no response to medication.
▪ Pulsating tinnitus in right ear (intermittent) – still remains to date
▪ Pain behind right eye and right sided headache (different to LP Headaches) – still remains to date
▪ Flashing white light when eyes closed/dark spots particularly at night - still remains to date
▪ Vibrating sensation throughout body (intermittent lasting up to 48 hours)– still remains to date.
▪ Painful joints (hips) and aching/weak limbs (intermittent attacks longest duration 5 days_ – still
remains to date
2007 (August)
▪ LP headache relieved by Blood Patch (4 weeks post LP)
▪ Neck and back spasms causing temporary hearing loss in right ear – lasting approximately 30
seconds to a minute (intermittent) – still remains to date
▪ Muscles spasms in legs (intermittent attacks last approximately 10-15 minutes) - still remains
today
▪ Sharp pain in jaw (intermittent) – still remains today
▪ Icy cold sensation in left leg usually following shower/bath or when exposed to heat (intermittent)
▪ Cold shiver/sensation down left side of torso (intermittent) – still remains to date
▪ Muscles tightness/heavy legs (intermittent longest duration 4 days to date) - still remains to date
Referred to MS Specialist. Awaiting appointment.
Siddy1, my mum is 65 and she says you are as young as the man you feel....! I've just turned 31 by the way and I love relating to you all.
I've actually been busy re-doing my timeline...it's pretty short really compared to other ones I have seen...and here is me moaning about not getting answers yet...feel like a novice now and I think I've been really lucky compared to some people to at least get some answers.
Would you mind, if you get chance looking at it (I've pasted it below). I bet it's awful so I really appreciate the advice from the experts. It's just hard trying to explain what you are still experiencing and things that were there but now aren't although they pop back just once in a while to say hello.....makes my brain hurt even thinking about.
I've been like this pretty much for 3 months now...do exacerbations last this long...?
Anyway...I'm talking too much as normal. Here's the first draft of my timeline...don't laugh...I tried.
Thanks again for all
Em x
***
1998
▪ Diagnosed with Kerataconus. Referred to Scarborough Hospital. Glasses prescribed.
1999
▪ Decline in vision (left eye). Issued with gas permeable contact lenses. Followed by quarterly
check ups.
2001 (July)
▪ Admitted to hospital after suffering numbness, pins and needles down left arm and
face. Symptoms lasted 3 days.
2001 (December)
▪ Constipation for 6 week period. Prescribed lactoloses, fibogel – no response to treatment.
2003 (October)
▪ Racing heart beat, dizziness, tight chest. Referred to hospital for further tests. Put on beta
blockers.
2005
▪ Bouts of back and neck pain, chest tightness. Regular chiropractic treatment..
2005 (September)
▪ Routine smear test. Positive result for cancer. Biopsy done, loop and punch. Third of cervix
removed. Admitted to hospital with infection. Course of intravenous medication. Follow up
smear tests now every 6 months – all clear to date.
2006 (June)
▪ Severe decline in vision, headaches and pain behind eyes. Began trial for 'piggy backed' lenses.
Followed by quarterly check ups.
2006 (November)
▪ Period of fatigue – lasting approximately 2 weeks.
2007 (February)
▪ Severe pain behind eyes, vision distortion and headache. Scan of the back of the eyes taken. All
clear, Prescribed 2 courses of antibiotics for 14 days– no response to treatment. Pain
continued for 3 week period – symptoms disappeared.
▪ Episodes of dizziness and balance problems lasting approximately 2 weeks, Fell down stairs after
loosing balance.
▪ Headaches and left sided facial numbness (intermittent) - lasted approximately 3 week period
▪ Pins and needles in left side of torso and arm (intermittent) – lasted approximately 4 day period.
▪ Painful cramp in left leg - lasted approximately 3 day period.
▪ Fatigue - lasted approximately 3 week period
▪ Experienced problems recalling words and information and at times could not get my words out
properly - lasted approximately 4 week period
▪ ▪Back, neck pain and tight chest. Chiropractic treatment sort.
2007 (May)
▪ Woke during the night with burning pain in heels – occurred 2 consecutive nights.
▪ Burning and cramping sensation in pelvis and groin area (left), back pain. Visited GP. Prescribed
2 courses of antibiotics for suspected infection. Swobs taken – negative. Referred to Gynaecology
(RVI) for ultrasound scan of ovaries and cervix – all clear. Diclofenic prescribed for pain. (Pain
intermittent longest duration 4 week period)
▪ Left leg numbness (total). Referred to Neurology Ward (General). Suspected prolapsed disc – all
clear. Referred to Neurologist.
▪ Left leg weakness (walking with a limp) – still remains to date although improving
▪ Loss of sensation in pelvis area. Hesitant when passing urine = still remains to date
▪ Tinnitus (ringing) in left ear – still remains to date.
▪ Dull Headache.(intermittent) – lasted approximately 3 day period
▪ Fatigue – still remains to date
▪ Balance problem – fell twice whilst at work within 1 week period
2007 (June)
▪ Electric shock down back and legs (intermittent) – for approximately 3 week period
▪ Muscles spasm in leg and lower back – prescribed Diazapan - reduced spasms – still remains to
date
▪ Intolerance to heat - other symptoms are exacerbated – still remains to date
▪ Shaking left hand – for approximately 2 day period
▪ Dizziness (intermittent)– for approximately 2 week period.
▪ Experienced problems recalling words and information and at times could not get my words out
properly.(intermittent) – for approximately 4 week period
▪ Constipation – for approximately 3 week period
▪ Numbness in left hand (partial – 3 fingers) – still remains to date (now total hand numbness)
▪ Tingling sensation in feet and hands (intermittent) – still remains to date
▪ Nerve twitching (which can be seen) – legs and arms (intermittent) – still remains to date
2007 (July)
Appointment with Neurologist. Admitted to hospital for further tests; MRI, LP, Blood Tests.
Ruled our infection, vascular and other conditions including Transverse Mylelitus.
▪ Facial numbness left side of face – still remains to date
▪ Severe headache caused by LP – prescribed Amitriptyline – no response to medication.
▪ Pulsating tinnitus in right ear (intermittent) – still remains to date
▪ Pain behind right eye and right sided headache (different to LP Headaches) – still remains to date
▪ Flashing white light when eyes closed/dark spots particularly at night - still remains to date
▪ Vibrating sensation throughout body (intermittent lasting up to 48 hours)– still remains to date.
▪ Painful joints (hips) and aching/weak limbs (intermittent attacks longest duration 5 days_ – still
remains to date
2007 (August)
▪ LP headache relieved by Blood Patch (4 weeks post LP)
▪ Neck and back spasms causing temporary hearing loss in right ear – lasting approximately 30
seconds to a minute (intermittent) – still remains to date
▪ Muscles spasms in legs (intermittent attacks last approximately 10-15 minutes) - still remains
today
▪ Sharp pain in jaw (intermittent) – still remains today
▪ Icy cold sensation in left leg usually following shower/bath or when exposed to heat (intermittent)
▪ Cold shiver/sensation down left side of torso (intermittent) – still remains to date
▪ Muscles tightness/heavy legs (intermittent longest duration 4 days to date) - still remains to date
Referred to MS Specialist. Awaiting appointment.
I have had at one time or another all the symptoms that you describe, and it sucks but that is MS. The good news is that they don't all stay with you and in fact they could all go away (and come back another time). I know you haven't been diagnosed yet but you might be experiencing an exacerbation right now and things might calm down as you were probably very stressed out going for your lumbar puncture.
The "coming and going" is typical with MS as far as I am concerned. I never know what I will wake up to. I get long periods of no symptoms except for what you call the 'hard core" with weakness in my left arm and leg which never goes away and at my age it is here to stay. If a miracle happens I will definitely post it.
As a side note:
I am a lot older than most people on this Forum but symptoms are symptoms and MS is MS at any age and although I know that the younger people on this Forum don't really want to think ahead to their 50's and 60's and don't relate to anyone outside of their age bracket - it will creep up on you, trust me. I never dreamed of being diagnosed with MS and here I am living with it.
Marcie
The "coming and going" is typical with MS as far as I am concerned. I never know what I will wake up to. I get long periods of no symptoms except for what you call the 'hard core" with weakness in my left arm and leg which never goes away and at my age it is here to stay. If a miracle happens I will definitely post it.
As a side note:
I am a lot older than most people on this Forum but symptoms are symptoms and MS is MS at any age and although I know that the younger people on this Forum don't really want to think ahead to their 50's and 60's and don't relate to anyone outside of their age bracket - it will creep up on you, trust me. I never dreamed of being diagnosed with MS and here I am living with it.
Marcie
I am so happy your headache has gone away!!!!! That's news to celebrate!
As far as the symptoms coming and going mine do the same thing and I just had a horrible doctor visit but I would think the timeline should help if you have a good doctor. I kow how you feel about the hypo thing, I have never in my life felt like I was one but when you start writing it all down it makes you feel like "Wow - I'm a head case!". You are not and I think doing the timeline and maybe going with someone who can support you and help reiterate to the doctor that this is not who you were three months ago and you need to get to the bottom of what is causing these symptoms.
Good luck on Wednesday and I hope you check back and let us know how it went.
Take care!
Kristin
As far as the symptoms coming and going mine do the same thing and I just had a horrible doctor visit but I would think the timeline should help if you have a good doctor. I kow how you feel about the hypo thing, I have never in my life felt like I was one but when you start writing it all down it makes you feel like "Wow - I'm a head case!". You are not and I think doing the timeline and maybe going with someone who can support you and help reiterate to the doctor that this is not who you were three months ago and you need to get to the bottom of what is causing these symptoms.
Good luck on Wednesday and I hope you check back and let us know how it went.
Take care!
Kristin
You definitely need to tell your neuro everything. Otherwise they wont be able to treat you as well. As for the symptoms coming and going, it's part of the disease. They get worse or more intense when having attacks (excaberations) as I call them. Just enjoy the times they aren't bad. Karina
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