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Old 12-20-2015, 08:23 PM #1
Sirfy80 Sirfy80 is offline
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Heart Possible small fibre neuropathy

Hi First time posting hoping to get some advice really. I have been having a number of odd symptoms following a hair transplant in June this year. Around 48 hours after the procedure which was done under local anaesthetic and is supposed to be minimally invasive I collapsed before boarding a flight and was told I had lowish BP and possible throat infection and was cleared to get on the flight.

On the flight home I had an extremely high heart rate throughout (anxiety I suppose) but for the following month I was extremely fatigued to the point where I couldn't stay up for more than an hour or so but was also struggling to actually sleep at night. I saw various GPs and even when to A&E as everytime I stood up I felt like my legs were going to go from underneath me I couldn't sleep at night and had extremely high heart rate especially at night I was told simply this was anxiety and I just needed to relax.

After a month or so the fatigue and brain fog started to lift but I found I would wake up at night and either my arm or foot would be completely numb. This happened for around a week and since have noticed a number of symptoms including pins and needles in hands and feet along with some burning in ankles and wrists this has developed into burning of the soles of feet and painful wrists to the point it's quite difficult to do every day normal things driving , opening bottles. I also no longer sweat except from armpits and occasionally from legs if it's very warm other things I have noticed are constant fullness in ears , loss
Of libido and loss of night time and morning erections , hair loss on toes , constantly cold, headaches which I did not have previously, around 2 stones of
Weight loss, heart palpitations in middle of night, anxiety in social situations, slight loss of balance. Despite my symptoms have still been advised by a number of
GPs , consultants and a neurologist that this is anxiety. Blood tests are all normal as far as I have been told and can tell except for testosterone which is 6.4 this however increased to 7.7 recently so have been told it's sorting itself out so no need for any intervention.

I have been offered anti depressants , pain killers and sleeping tablets but although the pain is quite bad at times have declined until I can hopefully get to the actual root cause hopefully.

Apologies for the long post but wanted to give full details to get some opinions on what if anything could have caused this as previous to the procedure I was perfectly fine . I also took prednisolone and anti biotics cefuroksim which was switched to Flucoxacillin as I suffered an allergic reaction to it. Could the procedure or any of the meds cause small fibre neuropathy ?

I don't know where else to go with this as my GP isn't really interested anymore and neither is any other doctor I have come across .

I have started some supplements recently b12 methyl cobalamin sublingual , Curcumin , omega 3s . I have also ordered benfotiamine and R ala which should arrive this week. Haven't noticed much difference as yet but not sure if these will help as haven't been able to determine a cause as such.

Many thanks for taking the time to read this
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Old 12-23-2015, 07:26 AM #2
SylvieM SylvieM is offline
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I was told it was anxiety when I was in the ER with serotonin syndrome....BP 300/240...
My antidepressant "cocktail" proved to be neurotoxic to me, and almost a year later, this was confirmed by a dysautonomia (autonomic neuropathy) specialist.

The turning point for me medically was my positive result for a SFN skin biopsy. Docs could not say it was anxiety. Yet it is all interconnected....we have only one brain. My slew of dysautonomia symptoms rode in on a wave of severe depression. I called around and got a great neurologist/psychiatrist who mediated my visits with the (doubting) testing neurologist, while ably counseling me. By the way, sensory neuropathy is just now kicking in for me....high gear.

I would suggest you go to the "Dysautonomia International" (DINET) ** information for doctors (and for yourself). With this in hand, try to find a sympathetic neurologist and get a SFN skin biopsy ASAP: this validates your symptoms. All of this can take months, so be prepared.

This is a tough road....hard to be taken seriously, and few treatments if you are. I do yoga and meditation...I also see a therapist. I was VERY ill with profound fatigue, but I am doing better each day....the depression is lifting. Although my neuropathic pain is increasing, many of my dysautonomic symptoms are improving. Yet I cannot work: this part is very hard for me. So, I suggest you get psychological support as you navigate this maze.

All my best,

Sylvie
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Sirfy80 (12-23-2015)
Old 12-23-2015, 01:18 PM #3
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Thanks for responding and the advice Sylvie appreciate it.

I don't know at this point how much of my autonomic functions are affected but they don't seem to bother me as much as the burning in feet and painfull hands. That's what I suppose affects me most on a daily basis and stops me doing what I normally do.

I think my symptoms came on quite quickly and though I understand this is a very difficult question to answer what I'm really concerned about is how bad this could potentially get and also how much improvement I can expect. I'm not hopefull of an underlying cause being identified as I mentioned I think the procedure is the cause or trigger if that is even possible. If this is the case is there potential for the nerves to heal or regenerate at all?

I have also noticed my uvula deviates to the left when saying ahh which indicates vagus nerve damage but again the neurologist I saw advised this was a normal variant and nothing to worry about. Can SFN affect the vagus nerve at all. I'm just not very confident in the medical professionals I have seen so far.

I am waiting for an appointment with a a professor who specialises in SFN and uses the CHEPS method to diagnose . This is in the UK.

I am going to continue with the supplements in the meantime and stay off the prescription meds for as long as possible . Also open to any other suggestions for relief or things that may help.

Thanks again
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Old 12-23-2015, 02:59 PM #4
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Sirfy, the more I read from many taking pharma drugs the more I see so much damage from the side effects of the drugs. I'm 77 and have taken so very few in my life and have worked with alternatives (supplements) for over 25 yrs.

I took a leap of faith and did a hip replacement in 2010 and have ended up with nasty femoral nerve damage, my right thigh is 80% numb 5+ yrs post op. I believe you are in the UK and for some time I was on a replacement group out of the UK and heard so many negative stories...thru that group I met some alternative thinking people and we still stay in contact as the one person formed her own alternative healing group.

Do your best with stick with alternatives as best you can, you'll be better off in the longrun. I realize people do "need" drugs and I've used some over my long life, but work with supps to address so many health issues. Nothing is 100% perfect. But not getting worse issues is key. Good luck. Caroline
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Old 12-23-2015, 09:35 PM #5
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Sirfy80 welcome. I am sorry you are suffering.

I think you would have more responses if you repost this under "new thread." Right now you're under the section of "pn tips", etc and I don't think as many people check here.

I'm curious if you had any of these symptoms before. For example did you have trouble sleeping? I ask because I now realize there were signs for me that I attributed to something else. It's only now (10 months later) that I see clues I ignored. I would suggest starting a journal to document what's happening. I do that now, but wish I had started it sooner.
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Old 12-23-2015, 10:06 PM #6
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Hi sirfy80,

Here is the link to the main Peripheral Neuropathy Forum in case you hadn't found that yet.
Below that I've posted the direct link to post a new thread.

http://neurotalk.psychcentral.com/forum20.html

Post new thread in PN forum

Also, I just wanted to let you know that you can keep a track of your posts if you subscribe to threads by following the information from the FAQ - Frequently Asked Questions below.

FAQ - Subscriptions



[ thanks pinkynose! ]
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Sirfy80 (12-24-2015)
Old 12-24-2015, 10:42 AM #7
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Thanks Lara and Pinkynose.

I realised as soon as I posted it was in the wrong section but wasn't sure how to get it moved. Have reposted now so hopefully get some more responses and points of view.

I've not had any real issues previous to this had some slight ulnar entrapment which would flare up when I overused my left hand weight training or on the computer but could control it by resting or using some Anti inflammatory topical gel. Can't even ever remember having a headache before this . I really do believe if I hadn't have had this procedure then I would not be unwell and if im being honest mentally that's the part I am struggling to deal with regret. I'm just not the same person anymore struggle to enjoy anything really and it's affecting my relationships including wife and two young children.

Now however am noticing new symptoms every couple of weeks. I am slightly paranoid now never was previously haven't had a day off sick in the last 10 years but not sure how much of it I can put towards the potential SFN or just being generally unwell and pretty weak now . I've cut out most high GI carbs and sugars as I feel this does slightly aggravate the burning but this doesn't help my weight situation as I think I struggle to eat enough calories to put on weight I've got two stones to make up somehow.

When I first fell ill I just assumed I would go to doctor they would tell me what's wrong and go from there bit naive possibly but having never really needed to go to the doctors I've not really had too much experience good or bad. I feel I've been pretty proactive in finding out what could be the issue and trying to narrow it down but anytime I bring it up with a medical professional I get a shrug of the shoulders and a well I really don't know and have you tried pain relief. I think this is also getting me down and the amount of time I spend researching online rather than trying to live my life. I was hoping the quicker I can get a diagnosis the better my chances and I suppose as time is getting on I'm getting more and more anxious.

i just wasn't aware so many people are struggling with illnesses that doctors don't have a clue about or how to treat. Really does open your eyes .


Thanks again for listening and responding
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