[Katharine]

Hi all

Now, I know before I start that I'm going to confuse you all but was wondering if any of you had any ideas on the weird symptoms I seem to be getting for the moment.

Recently I have been having problems with low BP. Of course, the first thing that the GP recommended was stopping the betablocker I was on to try and help migraines (bisoprolol 5mg). The trouble is I have done that and still have low BP. I'm getting these odd "moments" that can last quite a while where I am simply too tired to sit up and earlier today almost literally collapsed in bed. I slept for 1 1/2 hours and then spent an hour "trying" to wake up. I don't know if any of you know that feeling but you're awake and aware but literally can't move or get up. When I got up feeling a bit better, I took my BP and it was low again. The rest of the time I just feel like I've got diluted water instead of blood in my veins.

The headaches are back of course.

At the same time as this I have numbness and "wet socks" feeling which has come back to my legs (and to a degree in hands). I had this before and it gradually lessened with better disease control. The other day when walking I was suddenly hit with a "wave" of numbness all over my legs and arms - it was a weird and distrubing feeling that I have no idea how to describe properly - I've never had it before.

I was believed to have peripheral neuropathy but my last nerve conduction was fine (the one before was disastrous). The neuro then concluded that the previous one had been erroneous as you "can get a false "bad" but not a false good". The rheumy disagrees and says she expects my neuropathy to fluctuate with disease activity. I have also had sensomotary(sp?) evoked potentials done and, as far as I know, they were fine.

For info. I take carbamazepine (tegretol) for the terrible pain in my feet and it had helped a great deal (worsened when we tried reducing too) even though it seems now to be creeping back again - grrrrr - so do I or don't I have PN? I'm totally confused myself now.

Another odd thing - when I had a lip biopsy over two years ago the dermy seemed to have touched a nerve and half my lip remained very numb for a long time (don't worry, I don't drool :lol. That got better, not completely but barely noticeable. Now, it's back, very numb (even had to ask hubby to stop kissing me the other day :rotfl: as I had a numb/tickly/tingly feeling that wasn't at all nice).

I'm having severe nerve pain in various places as well as severe shooting pains; the sort that make you actually hold your breath (they typically last a good half hour in one place).

Also night sweats and continuing bad hip pain.

Of all the above - only the last two and the headaches are pretty typical if I flare. The others had seemed to be under control.

I am obviously wondering if my TSH levels are good but my blood test was said to be good so I presume so (I'll check tomorrow).

I had all these symptoms pre-diagnosis and no-one ever seemed to know why.

So, all ye experts out there, any ideas or is it my alien life form fighting for freedom again?

love and hugs to all,
Katharine

 

[KarolH]

Well certainly I am no expert but I hope to be someday.

I can share with you the numb face, lips included only on the right side and not low BP but low sugars that will drop drastically right after eating. Strange.

Just wanted to send you a cyber hug and hope this works it's way out of your life soon.:wink2:

 

[Sage Hen]

Katherine,

For what it's worth, I certainly think you do have peripheral neuropathy.

You describe a lot of the same symptoms I have experienced, and I am diagnosed as having P.N. I had it in my hands arms and legs, feet. On the tops of my thighs..too.

It makes perfect sense, that the symptoms would worsens with disease activity.

I feel badly for you, as I know how uncomfortable the neuropathy is. The numbness, shock sensations, and the awful shooting pains.. They are all horrible. The migraines are just terrible..also.

I take Neurontin for the neuropathy, as well as my other more important meds to treat lupus itself.

Hip pain is no fun, finding a position to sleep in with it is often difficult, as well and trying to sleep with the sweats. I am menopausal, so I just figured it was par for the course, for me.

You are younger so..I would guess it is directly related to your autonomic nervous system malfunctioning, or a medication side affect. Have you been diagnosed as having C.N.S.
Katherine? I am just guessing here of course..just food for thought.

I don't have low blood pressure, so can't give any help in that department.

I hope you feel much better very soon, Katherine.

Take good care of yourself, friend. I hope you will be past this bad flare soon.

Love,
Sandy

For You...:hug:ixiedust:

 

[Douglas]

Howdy Katharine,
Sorry to hear of your problems, of most of which I have had at least wee taste. It does sound like periferal neuropathy as my MD described it. I do hope you have some relief soon.
And thanks so much for all the work you do on this forum!
Douglas+

 

[lazylegs]

Hi Katharine,

It is time to see your rheumy. Things have definitely escalated and warrant further investigation. You should call and get your appointment moved up.

I've had the awake and aware but not being able to get up. It usually happens when I am flaring. When I do manage to get up I am like a limp rag. The only way I know to knock it out is with rest or a change in medications.

I'll let the doctors argue about the PN. It is possible to have the same symptoms and have it be a motorsensory neuropathy. Mine definitely waxes and wanes with disease activity.

Take care,
Lazylegs

 

[Katharine]

Hi all, thanks so much for the replies

Sage Hen, I haven't been diagnosed specifically as having CNS but I haven't been diagnosed as not having it either. Docs don't tend to write down labels that easily here and they admit that I have neuro involvement to some degree as I also have pretty severe cognitive issues (well severe for me anyway).

Lazylegs, I presume the sensomotory EVP would have been to check out motorsensory neuropathy? I don't know what the test is called in English. It lasts a good two hours to do arms and legs and you have to kind of sit back and relax while small electric currents are sent from one place to another.

Karol and Douglas thanks and hugs :hug: back.

I don't want to be whining about "minor" things but would kind of like a break that means more than two or three weeks stability. I'm not looking for normal, stable for a longer time would be nice that's all.

Katharine

 

[Pink Pearl]

Hi Katharine,
I am sorry you are battling this unwelcome companion. I also think you are having pn symptoms. The migraines are not uncommon with this problem, and why my new neuro doc says they go together, is a mystery. BUT, I take neurontin to control my migraines, and it helps with the pn too. I have little feeling in my lower left leg and some loss of feeling in my right lower leg. The emg's give very complex results. The neurologist who did this said she often sees similar problems with lupus. The neurontin should also help with shooting pains you are getting.

I take a combination of meds to control migraines, will share those if you want them. I had a migraine that lasted 4 1/2 months...so have loads of experience there.

I don't have experience with the other things you have going, so won't advise you on any of them. Hopefully, others will have more info for you there.
Sally

 

[Katharine]

Thanks Sally,

I'm finding that the problem is everything seems to go with everything...

Headaches seem to be a regular part of lupus for me and I can go months on end with them. I can also have a few months with no sign of them.

so are headaches "just" lupus, are they neuro, are they APS? no ideas and my neuro doesn't either. I do agree though that I think we need to be trying something different to the tegretol as it is no longer even helping pain in my feet enough.

 

[sam101360]

Katharine:

Have you been Dx with APS? I get the headaches, lower BP, the dreamy awake but not awake feelings and the numbness (which for me isn't NP either) and my rhumy feels it is all due to the APS. I only take baby asprin, however when it gets lkike that I take 2 regular asprin and feel a bit better in about 1/2 hour.

I would definately ring the rhumy and neuro and let them know about the increase in symptoms...if you haven't been dx with APS...perhaps you should request a re-test?

Much love, ((((HUGS))) hoping you feel better soon!


Stephanie

 

[Barb G]

Katherine,

I'm sorry you're feeling so badly. Some of your symptoms are quite scary.

How long have you been taking Tegretol? Are you aware that Tegretol is on the list of drugs that can make lupus worse? I no longer have the Dubois' book, but it was covered there.

Barb

 

[Katharine]

sam - I am "suspected" of having APS though I have never had a major clotting event, simply a lot of symptoms that seem very much to fit. I had an original anti-cardiolipin test that way way off the chart high but unfortunately, at the six week repeat test, the lab broke the tube and I never got that confirmation. in between I was started on aspirin and imuran and all subsequent tests have come back negative. I don't know if imuran can affect the result - the rheumy said something to that effect.
Taking 2 aspirin doesn't really do much for me on bad days, it was tried. What did make a huge difference for a few months was "piracetam" or Nootropil. It acts on the vascular system and also has blood thinning properties so...?

Barb - I have taken tegretol for a while. I never saw a worsening in symptoms due to it. Other lupus patients do also take it. I think it can be a problem in some people but not all.

I saw the GP today. He agrees that I should maybe bring the neuro appointment forward as, although, nothing is in any way "major" these are new or "returning" symptoms. If I can't get an early appointment, I'll at least phone.

I presume the neuro would be better than the rheumy given the symptoms...

 

[Marshmellow]

Completely understand the numb wet socks feeling, I was also told this is PN. I also have very low BP so suffer with the passing out/awake but not functional feeling....

however apart from sending a (((hug))) and lending a aympatheic ear I can't offer much constructive help ...wish i could as it would help me too!
love
Rachel

 

[lin]

katherine i don't know what to say only that i hope theyget you sorted out hun, i get the numb right side on cheek and lip not nice infact the cheek can hurt.

maybe you should be ringing your neuo's secertery up, there is always something with this disease hey? as for the tegretol, i was ok at first, i had to stop becuase of rash with it, so yes lots of us do take it,


good luck Lin xxxxxxxxx

 

[lazylegs]

It is the same test Katharine. My doctor usually tests both nerves and muscles. I usually get retested every year.

:flower2:
Lazylegs

 

[Katharine]

update

Well, the neuro has just called me back (her first free appointment was September and I have one in August anyway).

Due to all these new or returning symptoms she is suggesting we try gabapentin (neurontin). The reason why I have never been offered this before is because in this country (just like lyrica) it is NOT reimbursed unless you have shingles or diabetic neuropathy. However a generic has "just" become available which means I can get it prescribed at a much lower cost so long as I'm willing to pay for it myself and really I would do anything to be able to just do a simple supermarket shop and actually use my feet for standing on (never mind all the rest).

I'm so glad to have something I can try as I really have become very down about this.

love and hugs and many thanks to all

Katharine

 

[lin]

really hope it works, shame i got rid of mine, would have posted them you lol xx

 

[greenhaggis]

Sounds good Katharine!!!

I have a supply of Lyrica and i cant even use it as suffered with a rare side effect. Can birng myself to hand it back for destruction!

 

[Lily]

Hi Katharine,

I hope the Neurontin makes a world of difference for you :hug: it's been excellent for my neuropathy. Like Belgium, here in Australia there is only one condition it's prescribed for where it's subsidised and that's epilepsy. However I am able to have it prescribed as a hospital outpatient via my Neuro at a subsidised price...................thank goodness for that, I was in a sorry state before it and there's no way on a disability pension I could afford to pay the hundreds it would cost otherwise.

Good luck :luck:

love
Lily

 

[onetay]

It does seem that something is changing for you. The doctors have no idea what is going on with you yet? Oh that was a silly question wasn't it lol. This site will have it figured out before the doctor will lol. I have low blood pressure normally (which surprises the doctors as I have some extra weight lol I am being nice to myself). I drop really low with my blood pressure and get dizzy pretty fast.

I don't know very much about the things that are going on with you but I would take a trip to the er if this lasts too long. I am a little foggy tonight so that is the best that I can come with right now sorry for not being of much help.

Feel better soon and let us know if there is anything we can do to help you.